History

Sunday, March 31, 2013 1:03 AM CDT

trying to update this page but having issues with it. hope to get it straightened out soon.

Tuesday, May 12, 2009 7:36 PM CDT

Please visit our newer version of this page for updated journal entries and information about Krystal.

Just copy this link and paste to your browser:

http://www.caringbridge.org/visit/krystalmorey

~j~j~j~j~j~

Ren

Sunday, April 19, 2009 12:30 AM CDT

Krystal is home from the hospital; I brought her home yesterday bout 5pm. YAY! If you missed my journal entry from yesterday with hospitalization information, please click the journal history link to read it.
Krystal fell asleep around 6pm last night and has been sleeping since. First good night sleep in a week; you know how NOT restful hospitals are.

Still no final blood culture results but they started her on Z pack because it covers a plethora of things.

Thank you all for your continual prayers.

Sadly, I have just learned of a beautiful young woman with Addison's disease who passed away. Her name is Christie Williams and she was 23 years old, the same age as Krystal.

Christie passed away on March 3, 2009 in her San Jose home. Her death was related to Addison’s Disease, which she was diagnosed with last June.

Please keep Christie's family and friends in your prayers at this extremely sad and difficult time.

A great friend of Christie's, Megan, along with the Alphi Phi International Fraternity (http://www.alphaphi.org/), a sorority that both girls were a member of, are organizing a 5K Run/Walk in honor of Christie, with proceeds going to NADF, to help us reach their primary goal of stopping death from Addison's Disease. The event will take place on Sunday, May 3rd, 2009, in Campbell, California. Please visit http://www.nadf.us/ for more information about Christie and the run.

As always, sending angel hugs to comfort and guide you...

~j~j~j~j~j~

Ren

Sunday, April 19, 2009 12:30 AM CDT

Krystal is home from the hospital; I brought her home yesterday bout 5pm. YAY! She fell asleep around 6pm last night and has been sleeping since. First good night sleep in a week; you know how NOT restful hospitals are.

Still no final blood culture results but they started her on Z pack becasue it covers a plethora of things.

Thank you all for your continual prayers.

Sadly, I have just learned of a beautiful young woman with Addison's disease who passed away. Her name is Christie Williams and she was 23 years old, the same age as Krystal.

Christie passed away on March 3, 2009 in her San Jose home. Her death was related to Addison’s Disease, which she was diagnosed with last June.

Please keep Christie's family and friends in your prayers at this extremely sad and difficult time.

A great friend of Christie's, Megan, along with the Alphi Phi International Fraternity (http://www.alphaphi.org/), a sorority that both girls were a member of, are organizing a 5K Run/Walk in honor of Christie, with proceeds going to NADF, to help us reach their primary goal of stopping death from Addison's Disease. The event will take place on Sunday, May 3rd, 2009, in Campbell, California. Please visit http://www.nadf.us/ for more information about Christie and the run.

As always, sending angel hugs to comfort and guide you...

~j~j~j~j~j~

Ren

Saturday, April 18, 2009 12:37 AM CDT

It's been yet another long week. Bottom line, Krystal has been in the hospital all week.

Today is the Irvine Police dept. Car Show at UC Irvine! Their benefactor of choice this year for proceeds is HDSA OC... yay us! So everyone go to the car show today!!! Krystal is totally bummed because she really wanted to go hang with Emily there today.

Oh and everyone in Los Angeles or Orange County areas PLEASE but a Macy's ticket from us!!! Only $10 and you get your money back! Email me for details! The shopping day is Saturday, May 16th!!

Monday, April 13th: Krystal got a fever, chills, etc. which were identical to what happened when she was put in the CICU in February. I called Dr. Kaplan (Rheumatologist) wondering if it might be a reaction to a med she had just started, but he said he thought she had a bacterial infection and wanted me to take her in right away and told me to ask them to be sure and run blood cultures.
She was feeling so bad that I ended up calling 911 this time. They transported her at about 11:30pm, was taken to a room right away but still waited an hour and a half before the dr. (his name is Dr, Kaplan also) came in to see her. It then took another 2 hours before the nurses could get an IV started. After the ER nurses could not get it they called and nurses from 2 other areas came. One guy looked at her arms and wouldn't even try. Then a pediatric ICU nurse (Paula) tried and got it with a baby IV which is so tiny it barley goes into the vein, but it was in! Her nurse (Kip) was AMAZING! He birded her arm so she didn't move her fingers or hand and pull the line out. It then took another 2 or 3 pokes to get blood.

Her BP was not too bad but her pulse was like 135 and the EKG (?) showed an arterial flutter so they of course hooked her up to the heart monitor for a couple of days but is off that now.

She was moved to a room (not CICU because BP was stable) mid morning and of course no privates available but was put on the "waiting list" for one. Wednesday night they moved her to a private room.
She is on 3rd floor East. The staff has been pretty good and there. Krystal's nurses Eva and Danielle have been GREAT and she had one PCN (?) "Mel" that is amazing! Krystal had the burning, There have only been a couple of "situations" I had to address. I will detail those when I update after she is out of the hospital.

Krystal was in excruciating pain the first day there. It was so terrible to watch her laying there crying and and not be able to stop the pain. Within a very short time of being in the room I realized her sheets were making her Lupus flare and she had the continual rapid fire with the nerve endings thing happening. The bottom sheet was jersey (luckily) so I took all of the other sheets off the bed. The PCN placed an order for hypoallergenic sheets also (she ROCKS!). I am guessing that those sheets are just washed with no dyes or anything??
By Wednesday that problem had eased up immensely, for which we were all very thankful!!

We thought she might even come home yesterday, but then kind of crashed yesterday afternoon

Between urine tests and blood tests they determined that Krystal does have a bacterial infection, but we have been waiting for final results so they know what type exactly. They gave her Vanco, then roceffin (sp?) and then put her back on the Vanco. The dr said he is hoping to have all final labs back today.

Need to get to the hospital, will update further as I can.

PLEASE SAY PRAYERS FOR PAIN RELIEF AND HEALING FOR KRYSTAL!

Hugs ~

~j~j~j~j~j~

Ren

Saturday, April 18, 2009 12:37 AM CDT

Wednesday, April 15, 2009 8:28 AM CDT

Krystal had high fever, pain, etc. Monday and was admitted to the hospital again. They think she has another bacterial infection. Will post more as I know it.

Please say prayers for Krystal's pain to stop & for healing.

Thanks,

~j~j~j~j~j~

Ren

Thursday, April 2, 2009 0:23 AM CDT

Please see the journal history for an update from a few days ago for more information on the last few weeks. I was having difficulty log on here so was not able to post.

I took Krystal to the Rheumatologist yesterday (Wednesday, April 1st) to get results of all the labs that were drawn 6 weeks ago. Saw his NP (nurse practitioner) first and then Dr. Kaplan came in. Bottom line is Krystal now has Lupus. :-( ENOUGH ALREADY!!! She also has Sjogrens Syndrome, Reynaud's phenomenon and Small Fiber Sensory Polyneuropathy (SFSN).

He is starting her on Neurontin in hope of alleviating some of the pain she has been having form the SFSN. Every time she showers she is in severe pain for a good hour afterward. She takes her Atarax (like Benadryl, but rx.) but it does not really help. She lays there in extreme pain, crying because her skin feels like it is on fire and nothing we do seems to help. Candice even tried putting powder all over her but it did nothing. The dr said that this is not uncommon. It is the nerve ending "firing" repeatedly. The Neurontin should help with that, but it will take time to build up in her system.
They are sending her to two new drs. at Scripps; a Neurologist that specializes in headaches and a Gastroenterologist that specializes in motility disorders.

I am very, very tired and am having a bit of difficulty forming thoughts right now so will continue this another day but I must add a few personal notes and prayer requests as I always do :-)

Happy B'day (13/10) Rita
Happy B'day (3/27) Sheila
Happy B'day (3/28) Libby
Happy B'day (4/1) Dusty

Andy ~ Thanks for being one of my best friends! Keep prayers going for Andy's cousin Dave and his entire family!
Dave ~ Big bro, love ya! Keeping you in our prayers.
Kristyn ~ Mom hugs. I know this week has been a very emotional one. I know your mom would be so very proud of you. You are an amazing woman with a very kind heart. Easton is truly blessed to have you in his life. You are a wonderful addition to the family.
TJ ~ Just remember... do it for Lilliah. :-)
Kathi & Larry ~ May this be the last birthday Larry spends away from home!! You are wonderful parents and your son is an amazing young man and Marine. If anyone would like to send Larry a birthday card, please email me privately for information!
T & C ~ We WILL win this battle for Emily!

As always, sending hugs & love out to you all ~

~j~j~j~j~j~

Ren

Wednesday, April 1, 2009 10:18 PM CDT

I tried to post this the other day but had problems. I now have a new update but am posting this also so as to keep everything documented.

A lot going on with Krystal but my laptop was in being repaired so I was not able to keep up here for a while.
First, still working on the low iron issue. She tried the oral iron again but couldn't keep it down so Dr. Wallach had her stop taking it. Her level went up a tad bit so they are hoping that the infusion she had is helping a little. They will recheck her iron on April 6th.

Krystal did the Evil Room trip again Tuesday (March 24th). They were swamped!! 1 & 1/2 hours just to triage, and then almost another 4 hours till they got her in the room. 3 nurses tried hitting her veins and they finally got it on the 5th try. 2 bags fluids, pain meds and sent her home. Of course as happens often, her labs looked okay. This is a double edged sword; it's good that the labs say she is not dehydrated, but it is frustrating because we know her body is needing the fluids.

Krystal now lives in/with pain on a daily basis pretty much 24/7. The pain is never gone, just less at times. Candice has taken her dancing a few times recently when she is up to it so she can get out of the house. Candice, Krystal & Libby went dancing Friday night for Libby's birthday and they had a blast but Krystal got a little too wiped out. She has been in bed since then and started vomiting and all that fun stuff again yesterday.
We are really looking forward to her appointment with the Rheumatologist this Wednesday. She will actually be seeing his PA or NP or whatever she is, but we will be getting lab results and hopefully a new game plan.

I will update after the appointment so please check back later this week for new information.

~j~j~j~j~j~

Ren

Tuesday, March 3, 2009 9:00 AM CST

NO IRON INFUSIONS THIS WEEK!!!!!

Dr. Wallach decided to hold off on the infusion and have Krystal try taking iron pills in rx. strength.
Say a prayer that the pills don't rip up her stomach! The last time she had to take the iron pills it did not go so well. If this doesn't work they will have to try the infusion one more time... which makes us ALL very nervous.

Thanks for ALL of the support while Krystal was in CICU last week!!

You guys ROCK!

LOVE YA!

Please say a special prayer for Dave. Love you big bro! And also for my friend Michael...

Diann ~ Hugs to "Country" for me please! I am SO glad he is back home! You know I love all "my boys" but he is truly one of the more impressive Marines I have met!

Carol ~ I have been thinking about you! ~hugs~
Everyone please keep my friend Carol & her family in your prayers. It is just over a year ago that Jesse went to heaven. You can read about this AMAZING young man in the journal history.

~j~j~j~j~j~

Ren

Saturday, February 28, 2009 3:47 PM CST

The mystery continues....

Krystal was released from the hospital yesterday. When all was said and done the doctors still don't know what is going on.
First thought was it was a reaction to the iron infusion but because that would be "very rare" it was discounted as "more than likely not". HELLO??? Do they NOT know Krystal by now???
C Diff was talked about, but dismissed quickly.
Then they said her urine had "crystals" and something else (I can't remember what it's called at the moment)so there may be some bacterial infection, hence giving her antibiotics (one IV dose of Vancomycin in the Evil Room followed by one dose each day of Ceftriaxone (Rocephin) in her IV (3 days total) and sent home with a 5 day rx. of levaquin.
All cultures came back negative, but they want her on the antibiotics anyway because something is going on and they think it is bacterial, they just don't know exactly what.
Dr. M came into Krystal hospital room yesterday (Friday) afternoon and started asking if Krystal has ever had a blood transfusion. She said her hemoglobin & iron are very low. WHAT? I asked why or how these can be so low when Krystal just had an iron infusion on Tuesday? Her reply was that she was going to call Dr. Wallach and talk with her.

About 10 minutes later Dr. M came back in the room and said they were going to send Krystal home and she was to see Dr. Wallach on Monday. Krystal was feeling like crap but glad because she just wanted to lay in her own bed and get some sleep; you know how hospitals are... you can not get a decent nights rest there.

So... there are 3 unresolved questions at this time that come to mind; if any of you have thoughts or ideas, please email me and I will certainly include them in our conversation with Dr. Wallach on Monday.
1. Why is Krystal's BP dropping by 15 to 20 points (systolic) when she lays down? Sitting it will be like 100 to 106/58 and then she will lay down and it will be like 80 to 85/48 to 58
2. What's going on with the hemoglobin and iron levels?
3. What "medical" answer can you give me as to why my daughter ended up in the CICU unit?

Monday when I take Krystal back to La Jolla to see Dr. Wallach she is also getting the next iron infusion... I am rather concerned as in my brain I can still not rule out that this all might be a reaction to the infusion. So I guess if the same thing happens after this infusion, we will have answers.

I will post a new journal entry Monday evening so please check back then or Tuesday for an update.

Thanks for all of the prayers and positive thoughts that have been said and shared for Krystal and our family this week.

Libby ~ Thank you for coming and hanging out in the hospital with Krystal!! It was most appreciated!!

~j~j~j~j~j~

Hugs ~
Ren

Thursday, February 26, 2009 9:02 AM CST

Krystal should be moved out of the CICU today into the Cardiac Telemetry Unit. She is doing much better. Her BP has been averaging 100/56.
The doctors said that they believe this is a bacterial infection of some sort and are waiting on all of the test results to come back for more clarification. In the Evil Room Dr. Kaplan gave her one IV dose of Vancomycin and last night Dr. Maraghabi ordered Ceftriaxone(Rocephin) in her IV. This all made me a little nervous because of Krystal's extensive antibiotic reaction list, but of course the docs said these meds are okay. She has had the Vanco before... when she had the C Diff the first time. The dr. said they don't think this is C Diff... so that is awesome! now if they can just figure out what it is. They also don't think it is from the iron infusion. Krystal is scheduled for her next infusion next Monday. We will be rather anxious with that to see if she reacts or not; keep positive thoughts going that she does not.

Need to get to the hospital...

Thank you all for the continued prayers!

~j~j~j~j~j~

Ren

Wednesday, February 25, 2009 9:40 AM CST

Krystal is in the Cardiac I.C.U. at Mission Hospital. Please read the journal entry I posted yesterday and this will make more sense.

I had to take her into the Evil Room last night and by the time they triaged her, her BP was 64/38. They admitted her to ICU at 5:30am this morning. Her BP is low; the systolic (top #) is fluctuating between 60's & 80's, once in a while going into the 90's.

We think the problem is a reaction to the iron infusion she had done yesterday but they are not positive yet as she had antibiotics a few weeks ago so it might be that she has C Diff again.

All went well with the Iron Infusion yesterday afternoon and she was feeling fine. She had the infusion at about 2:30pm. We went out to dinner around 6pm and midway through she started not feeling well. She got very cold and could not warm up. This was followed by nausea and dizziness. We left the restaurant and Candice bundled her up in blankets in her car trying to keep her warm all the way home.
By the time we got home she could not stop shaking, she was so cold and had goose bumps everywhere and her back started hurting badly so I gave her Atarax (like Benadryl). This went on for a bit and then she started getting hot and had a 103 temp. so I called the doc and he said to give the Atarax another 40 minutes and call him back. Within the 40 minutes her temp was 104.2 so I gave her Advil and called him back and he said she needed to go in. We got to the Evil Room around 10:30pm.
They had to get her out of the car because she couldn't even walk when we got to the ER. She then sat in the wheelchair for over an hour before they even triaged her. When they finally did, her BP was 64/38 so he rechecked it on her other arm. The finding was the same on that arm. He immediately called another RN in and they radioed that they had a "level 2" and she was put in a bed immediately.
They of course had trouble starting her IV and drawing blood. The nurse, Grace, drew blood, flushed the line and then when she found out she needed more blood, she pulled back on the same line and drew more from there! OMG, I even know you don't draw off of a line you have already flushed! She was having trouble with the line and another nurse came in (Christine) and started another IV. When I mentioned to her and the lab tech about the flushing of the line, etc, they drew all new labs.
Krystal's BP went up a little but not much throughout the night so they decided to admit her. Dr. Kwon (?) and I talked about the fact that she had been on antibiotics a few weeks ago so even though they are pretty sure this is related to the iron infusion yesterday, they are making sure she doesn't have C Diff again because some of the symptoms she is displaying are identical to the last time she had the C Diff.

Need to get back to the hospital... Will keep ya posted.
Please keep good thoughts and prayers going.

~j~j~j~j~j~

Ren

PS... Terry ~ YES you are and NO I can't believe you are! Rita's right behind ya and I will follow suit soon! LOL!
Got your text last night just as everything was starting to happen! Sorry I could not reply.
Hope you B'Day was PERFECT... OLD friend! Love ya!

Tuesday, February 24, 2009 11:27 PM CST

Went to the hematologist last Thursday morning. Krystal is Iron deficient and now has to get IV Iron infusions. It is a series of 10 treatments over the next 3 weeks.
Went to the Rheumatologist Thursday afternoon; it was a 2 & 1/2 hour appointment followed by labs. This doc seems pretty good and is checking her for a number of new things and rechecking a couple of old things.

The first IV infusion was today. Seemed to go well... until tonight. About 7:30pm Krystal started feeling 'not well and became nauseous and then got really cold. She could not quit shaking and was freezing. We cold not warm her up. Then her back started hurting and within an hour she had a fever of 102.5 and was hurting all over. I gave her Atarax and called the doc. He said I did the right thing and am supposed to call him back in 45 minutes. He wants to give the Atarax some time to work and see how she is doing. It has been 30 minutes and Krystal's temp is up to 104 so I just gave her Advil. I am going to give that a bit of time to work and recheck her temp and call him back.

Ren

Tuesday, February 17, 2009 8:31 AM CST

Krystal is still anemic. She is seeing the hematologist Thursday morning and then the Rheumatologist Thursday afternoon. I was glad to be able to get both of these appointments on the same day as they are both "down south" over an hour away (with no traffic). Dr. Wallach is in La Jolla and Dr. Kaplan is in Encinitas.

We will get the labs results and find out if Krystal needs the iron infusions; we are of course hoping NOT! Also hoping that Dr. Kaplan has some new ideas regarding the Osteoporosis and treatment.

Oh, on a side note, Krystal got a new cat Saturday. Her name is Bastet (Egyptian Goddess, google it). She is about 6 months old and is black, but if you look from an angle you can see dark brown stripes... very cool looking.

Please keep good thoughts going... we have waited sooooooo long to get to these doctors at Scripps and have such high hopes that they will have fresh ideas and positive answers.

~j~j~j~j~j~

Ren

Wednesday, February 4, 2009 8:45 AM CST

Last week was a very long week.

We went to the Urologist on Monday (Jan. 26th) and they removed the stent... not a fun time for Krystal; she hurt for a couple of days after that.

Tuesday afternoon we went to Scripps and saw the Hematologist (Dr. Wallach). She was so very nice and we really liked her. She wants Krystal to see a rheumatologist for her Osteoporosis ASAP. Krystal has a follow up with Dr. Wallach next Monday, the 9th.

While we were on the way home form Scripps Tuesday night Candice called and was having one of her "tummy attacks" and had to go to the ER. I told her I would meet her there. And then of course I notice the gauge in the Mustang is pegged on HOT so I had to stop and trade cars at home before going to the Evil Room. Chuck & Easton looked at the Mustang and said it was fine; it was a faulty gauge which will require the entire instrument panel being replaced... frigging LEMON of a car! Grrr!

The hospital REALLY ticked me off when they sent Candice home while she was still in pain and had a rash that they couldn't get to go away. They said all they could do was pain management and she should follow up with her doctor. I was NOT a happy camper. We got home about 12:30AM.
Friday night our dog Cody went to doggie heaven... we think he had a stroke and about 2 hours later he died at home in Candice's arms. OMG, it was so difficult.

Krystal has a pretty bad migraine today. She has not had a bad one in some time; we are hoping to manage it at home... keep good thoughts going!

So for now, just waiting for the Rheumatologists office to call back. The first call to them didn't go super good and their first opening was the end of March so I called Dr. Wallach's office. One of the girls there, Jessika, is awesome! She said she would take care of the problem and when I called the Rheumatologist the second time they said the doctors had talked and they needed to find a cancelation or move someone to get Krystal in. I am hoping to hear from them today.

Will update as "events" un fold.

Hugs ~

~j~j~j~j~j~

Ren

Saturday, January 17, 2009 11:05 AM CST

**Please see journal history for prior info. relating to this journal entry**

At about noon yesterday the doc decided to go ahead with the procedure because the stone was not moving. He did the Ureteroscopy & Lithotripsy last night.

They had to give Krystal 2 bags of plasma (FFP) to lower her INR (it was 5.0) or in other words make her blood so it could coagulate because she was basically like a hemophiliac and they could not do the procedure with it like that. All afternoon long I kept asking when they were going to give her the plasma because the dr. was planning to do the procedure last night. I think it was about 5:30pm when they finally gave her the FFP. Oh, FFP is Fresh Frozen Plasma. It worked; it lowered her INR to 1.9 within an hour which amazed me.

All went well with Krystal's procedure. She left pre-op at 9pm, was in recovery by 10:30pm and back to her room about midnight. They did put the stent in but he said it will come out in a week. We really like this Urologist (Dr. Pasin) but I was not thrilled with the anesthesiologist (Dr. Wong) in the beginning. Her kept saying Krystal did NOT need a stress dose of steroids for this because she has been on regular Prednisone for a long time and would only need a stress does for a MAJOR procedure. We talked and discussed what and how much of a stress dose she was given when she had her tonsils out, etc., and then he said, well I can give her a stress dose if you want. I told him it was not a matter of what I wanted, but rather what Krystal's body NEEDED as an Addisonian and I explained a little more of basic Addisonian body needs for "stressful" situations. He decided to give her 100mg hydrocortisone.
Today they are giving her meds to "numb" her bladder, turn her urine orange and clear out her kidneys... hoping to get some more of the stones to pass while she is there and they have the stent in. The doc has commented a number of times that she has A LOT of stones still in her right kidney.

The nursing staff has been VERY nice and helpful this stay. Will update more later on this subject...

Ted, Carla & Emily.... OMG, THANK YOU for coming to the hospital; I can't begin to tell you how totally surprised I was. The nurse said they will be coming in to take her to surgery very soon so when Krystal said, "Hi" and I looked up I expected to see the transport person!! It meant the world to Krystal and of course to me! And Ted, loved the WD 40 or 3 in 1 oil idea... but the Rock Hammer idea was THE BEST! When I showed it to Krystal she said we are warped! I do know what she's talking about??!! LOL!!
Neen, Sheila, Easton, Jon, Terri, Deanna, Manda, Sheryl, Andy, Michele, Joni, Pam, Meg, Becca and all of my other friends at work, thank you for the prayers, constant communication, and words of support & encouragement! YOU GUYS ROCK! Oh and to all of the girls (and Jesse) at the lab... you guys are the BEST!!! Thank you for always talking care of Krystal!

To my beautiful niece Amanda... HAPPY WEDDING DAY sweetheart!!! We sooooo wish we were there with you all! WE LOVE YOU!!! Sending you Miiiiiiike hugs and much love!!

~j~j~j~j~j~

Ren

Saturday, January 16th... 6:00pm... KRYSTAL IS HOME!!! YAY!! Came home early this afternoon and then WE took a nap. THANK YOU GOD AND EVERYONE FOR THEIR CONTINUAL PRAYERS!! Monday she has an appointment with a hematologist at Scripps in La Jolla!! Please keep the good thoughts going!

Monday, January 19th... had to reschedule the appointment in La Jolla. There was no way Krystal was going to be able to sit in the car for over an hour each way, she is hurting too much. But I think if I had a 32cm (almost 13") stent running all the way from my kidney to my bladder I would be feeling pretty poorly too.

Friday, January 16, 2009 8:59 AM CST

Krystal is in the hospital with a 7.1mm kidney stone. No time to go into detail now; will update later.
Doctor deciding this morning on course of action once they do another X ray to see if stone is moving. He does not want to go in if at all possible for a number of reasons the first being that she is on Coumadin and her INR is already on the high side of what he would want it to be for any procedure... but they can't try and lower it because of her blood clotting disorder and the fact that she is currently dealing with the DVT in the internal jugular vein as it is.

Please keep good thoughts going.

Hug ~
~j~j~j~j~j~

Ren

Friday, January 9, 2009 9:23 PM CST

Krystal has an appointment at Scripps in La Jolla (CA) on January 19th!!!

WOO HOO BABY!!!!

And not a moment too soon... she is sick again fighting a really bad cold and struggling. She couldn't even keep water down the other day.

I requested a meeting with Mary, the manager/head of the Short Stay unit at Mission Hospital earlier this week. The more I went over and over in my mind the events of Krystal's last hospital stay, I just HAD to talk with someone. When I got there she let me know that another manager would be meeting with us, which was fine with me. All went well and the 3 of us had a very good conversation which lasted close to an hour. Thank you Mary for always being so kind and caring!!

I will update more soon...

~j~j~j~j~j~

Ren

Monday, December 8, 2008 1:22 AM CST

Well after months of major computer problems, I am FINALLY back online 100nd moving forward! I will be using/checking this email address daily so if you want to get a hold of me this is probably the best email to use.

There is just so much going on with Krystal over the last two months. She has not been feeling well since the last ER visit on 10/23/08. She has seen her internist, her endo and her gastro. We are all very frustrated!! She has lost 15 lbs in the last month and is anemic. She has so much pain in/from her back that most nights she has gone to putting on one of her corsets like a brace and is sleeping on the floor. She needs one of those medical type orthopedic beds but the are very, very expensive. Just Tuesday her gastro dr. finally said he does not know what else to do and he thinks she needs to go back to Cedars-Sinai Medical Center. Her endo still thinks she should go to Mayo Clinic in Minnesota. I just don't know which way to go...

I took Krystal to the Evil Room (that is the ER for the novices out there) Wednesday morning and she was admitted to the hospital that night. Got to the hospital about 10:30am, she was admitted at 4pm and finally got to a room at 8pm. I was so glad to get her out of that ER. They had her laying in a hallway bed location for 6 or 7 hours. Talk about absolutely no privacy! They thought she had another blood clot that had moved to her lung, but luckily not. However the admitting dr. made a comment that she does have more kidney stones, even more than when she was in the ER in October. I told her that we were told Krystal did NOT have kidney stones in October and she said she absolutely did. ARG!!! WHY THE HELL did they tell me she didn't? Anyway, she has a number of "new" kidney stones ranging from 1mm to a little over 4mm in size. They got an IV started in her wrist (not on first try of course) but it did not last long. New location... shoulder. The site on her wrist immediately hematomaed and by Thursday morning her whole hand was swollen. She sent me video on my cell and when I saw it I couldn't believe it!

I am of course having to go to work so I was going to the hospital before work to check on her, and then going back to the hospital right after work. As soon as she sent me the video I called her nurse because Krystal said she had shown it to the nurse but she told Krystal it would go away and was not a big deal... yeah, maybe not a big deal for a person who doesn't have a blood clotting disorder! ARG! From the second the nurse (Megan) got on the phone she was rude and snippy with me. I remained VERY nice, I mean I am not stupid, this lady is in charge of my daughters care all day long, but I also needed to get her to understand the issue. At one point she put me on hold and 7 minutes later someone else picked up the line. Turned out to be the receptionist (Lynn) and she was very nice, I explained my entire conversation Megan and ask Lynn if I should maybe just talk with the charge nurse. She put me back on hold and Megan came back on the line about 3 minutes later and was nice as could be and said she would hot pack and elevate Krystal's arm and I thanked her. When I got to the hospital after work Megan came in to give Krystal meds and didn't even acknowledge my existence. When I said hello she said, "Oh I didn't realize that was you, I thought there was another patient in the other bed and you were visiting them. I asked her for a copy of Krystal's labs (which Krystal had asked for at 12:15pm and she told Krystal, "No, I am too busy. I will get put it on my list of things to do before I go home) and as she walked out the door she said she was busy but would get them before she left, to which I responded. "Oh, okay, no problem, I just thought that since Krystal had asked for them at noon, you might have had time to print them by now." 5 minutes later she walked back in, laid them on the bed and said, "Here you go Krystal" and totally ignored me. Oh yes, we were having fun!!!

Krystal was discharged Friday. They had given her fluids, done what they could and so, once again sent her home. Before she was discharged Krystal got copies of all the tests and read the results of her CT abdominal scan and it said, "apparent gastric wall thickening, although this is hard to determine without oral or IV contrast. The stomach appears moderately distended. RECOMMEND repeat scan with oral and IV contrast." This of course concerned her so she asked the nurse to check with Dr. Moraghebi if she should have another test done. The nurse came back and said Dr. M. talked with Dr. Adamany and they didn't think it was necessary... hmmmm, interesting concept.
Tonight (Sunday) her right shoulder is really hurting just above the site of her IV. You can feel the hard vein so we are hot packing her arm in hope that another DVT has not or does not form.

Please keep Krissy's nephew in your prayers. He is 15 and was just dx. with Lupus and my "see-stor" Neen as she is in the midst of medical fun-ness of new dx's.
Also, keep Cindy F. in your prayers. She and Krystal have different health issues but they both seem to be the "one in a million" type of cases you always read about.
As always, please keep my beautiful niece Emily (and family) in your prayers as she battles Huntington's Disease.

TJ ~ thank you for being my medical researcher when I had no access in the hospital!!
Terry D ~ thank you for checking on me!
Como 1 ~ well, you know... :-)
Super BIG bestest friend hugs to you all!!!

HAPPY BIRTHDAY THURSDAY (11TH) TO CANDICE!!!!!!!!!!!!!!!!!!!!!!!

HAPPY BIRTHDAY FRIDAY (12TH) TO KRYSTAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I LOVE YOU MY GIRLS ~

Please keep our family in your prayers.

~j~j~j~j~j~

Ren

Mini update... December 11, 2008
Krystal now has a blood clot in her right internal jugular vein. She saw the hematologist today and we discussed placing a vena cava filter in an artery but it would do no good because her clots are always upper body... so the only option is super high doses of blood thinners; so for the next 5 days I give her shots of Arixtra (blood thinner) in her belly and also high doses of oral Coumadin. This doc suggested taking her to Scripts down in San Diego so I now have another facility to choose from. Sure wish I knew what to do... anyone wanting to weigh in with their opinion on facilities, I would love to hear the thoughts you have to offer; shoot me an email please.

Easton ~ Thank you for being here this week. Oh, and great job in the strongman competition! Now let that arm heal before you go lifting another 600 lbs.!
Jon ~ Stay focused. Congrats on the GREAT test score!! You WILL be in the top 3 of your class!! Ohh Rah! :-)

Saturday, October 25, 2008 6:49 PM CDT

I really wish that I could say it has been so long between updates because nothing has been going on, but the reality is quite the opposite… multiple doctor visits, 1 Evil Room trip and, not 1 new diagnosis, but 2!

We did the Huntington’s Disease (HD) walk on Sept. 27th & it went very well! Krystal slept for some time afterwards but everyone had a great time and most important, we helped raise money for HD research!! Our team ROCKED! Oh & we looked great too, thanks to Candice’s amazing design talents & Michael’s ability to get his fellow Marines to donate covers (hats). Krystal spent hours hot gluing & assembling 600 participation ribbons! Thanks to Shari, Stephanie, Brandon & Marcela for the use of the scissors, glue guns & glue sticks! You all are awesome! Thanks guys!!

Krystal has been having some pretty intense back pain for a few weeks now. That, coupled with the broken foot this summer, prompted Dr. Truong to order another Bone Density Scan; the last one was 2 years ago when they discovered she had Osteopenia.

The results of this new scan actually shocked us… Krystal has a 16% bone loss in her lower back since the last scan & now has full blown Osteoporosis… : -(
The doctors said the numerous Evil Room visits & admits this past year requiring massive doses of steroids & stressful situations for so many months before that have taken toll on her body.

The following week Dr. Badie ordered back x-rays to rule out a compression fracture & the good news was no fractures! The not so good news was the x-ray showed Krystal also has mild scoliosis.

Krystal has been in a lot of pain & just not feeling well. She has had a few good days though & we were able to go to Neen & Frank’s one day & hang with the family while Dave was visiting from Montana. It was so good to see my big brother, it’s been waaaaaay too long! It was a very nice day.

This entire week has been a rough week (more than normal). On Monday Krystal saw Dr. Truong to talk about our game plan regarding the Osteoporosis & she was feeling terrible. She can not take any of the “newer” meds out there because they all say either do not take if you have adrenal insufficiency or do not take if you have blood clotting history; she has the Addison’s & the Lupus Anticoagulant, so none of these meds are a viable option. He is having her try Miacalcin, an “old school” nasal spray. He also ordered labs & the results show she is pretty anemic which isn‘t surprising as she is not eating much & what she eats comes right back up. By Wednesday she was feeling even worse & we were tripling her Pred. Dr. T said if she got any worse I was to take her in. Thursday night the sharp & shooting flank pain started & she said she was getting a feeling of little electric pulsating shock wave shooting through her body. So about 1AM (Friday morning) we headed to the Evil Room.
Luckily they were not busy so she got right in. The nurses now know Krystal & how difficult her veins are to hit; last time she was there it took over 3 hours of pokes & they ended up calling an ICU nurse (Monica) to come try; she got it on her first attempt. So after a brief conversation about the last ER visit they called the ICU & Monica came down, but she couldn’t even hit a vein; she stopped after 4 attempts commenting on how dry Krystal was. The 2nd nurse to try got a line going, so only 8 pokes this time… which is about 7 too many! This is sooooo frustrating! We have addressed the idea of a port-o-cath a number of times but all of the docs keep saying “No.”
They did the standard fluids, pain meds and ran labs. Standard practice now is to always check her INR; on Monday it had been 3.5 and at the ER is was 1.4, CRAP!
The ER doc talked with Dr. Kwa, one of the admitting docs there; he knows Krystal pretty well now and decided not to admit her as he knows the protocol with her. So, about 6AM I brought her home, got her settled and went to work.
She is doing better today and she and Candice went out shopping for a while looking for a Halloween costume. Krystal said she’s not sure if she will be up to going out but she’s going to get a costume just in case.

Oh but to end on a very positive note… we FINALLY got the home INR monitor for Krystal!! We can now check her INR levels from home or anywhere we need to!! WOO HOO BABY!!!

I hope you all have a safe, fun filled Halloween and don’t forget to turn your clocks back on Nov. 2nd!

God bless you all for caring about Krystal and our entire family as you do and of course GOD BLESS AMERICA… Don’t forget to vote on Nov. 4th!!!

~j~j~j~j~j~

Ren

Saturday, August 9, 2008 7:40 AM CDT

FOR EMILY ~

This is long, but PLEASE read to the end!!

A HEALTHY PERSON HAS A THOUSAND WISHES,
A SICK PERSON HAS BUT ONE...

To our family no words were ever more true, nor statement more profound.

Krystal shared this saying with me a while back and it had quite an impact on me; in fact, much more than I even realized at the time.
Since that day this very saying has come to mind more than times than I can count.
Every time I am sitting in an Evil Room (ER) watching my own beautiful daughter fight to be strong as the tears are streaming down her face because they can’t hit her veins when she is dehydrated (twice already in September), or when she stumbles slowly through the house with no energy for days on end, I think of this saying.
Last week when I received an email from my friend Carol (who lost her 8 year old son Jesse just 7 months ago) telling me her older son Aaron is again battling Leukemia for the 2nd time, I again thought of this saying (please keep Aaron and all of Carol’s family in your prayers).

And every single day when I think of my very beautiful niece Emily, I think of this saying.
Emily was diagnosed with Juvenile Huntington’s Disease (HD) last year at the age of 19.

HD is a progressive degenerative neurological disease that destroys neurons in areas of the brain involved in the emotions, intellect, and movement causing total physical and mental deterioration over time, depriving one of the ability to walk, talk and reason.
Juvenile HD develops before the age of 20, progresses rapidly, and produces muscle rigidity in which the person moves little, if at all (akinesia).

Huntington's Disease is an incurable disease…

The Orange County Affiliate of the Huntington’s Disease Society of America (HDSA) will hold its 6th Annual Walk for the Cure at the UC Irvine Campus on September 27th, 2008 and we will be there.

Our team is TEAM UMBRELLA; Krystal and Emily actually came up with this name and it has dual meaning.
First, breakthroughs in HD research benefit the research of other neurological diseases as well, such as Alzheimer's, Parkinson's, ALS (Lou Gehrig's Disease), and MS. There are a number of neurological diseases which fall under this ¡§umbrella.¡¨

And secondly, the Rihanna song ¡§Umbrella¡¨ holds personal meaning to both of the girls in their daily struggles.

Our team, TEAM UMBRELLA will join ¡§Team Friends and Family Who Care¡¨ and we will walk together! We will be out in force and we would like you to join us!

Please take a moment to view our web site. You can meet Emily, learn more, view our photos and hopefully, choose to join us and our team in our efforts to combat HD. Oh, and be sure to turn your speakers on while you visit our site.
The link is listed at the bottom of this page.

You can become a part of our team by simply clicking the MySpace link below and sending Krystal an email saying you want to join the team, or email me, or even quicker, you can text message Candice at (949)246-0666 with the letters ¡§HD¡¨ and she will call you back.

Please join us next Saturday, September 27th at UC Irvine. There will be a bake sale, a silent auction and participants will receive a t-shirt, goodie bag and more. You can walk, run, push a stroller, pull a wagon, or even walk your dog!! Wheelchairs and scooters are also welcomed!

If you can’t join us please support us by making a donation; every dollar helps!!! Funds raised from this event go toward supporting HD research currently taking place at UC Irvine. Cash, checks or money orders made out to “HDSA-OC¨ can be sent to us through the mail and will be turn it in. Email me for the address to mail checks to.

Or, you can make a credit card donation at the “Firstgiving¨ site Emily’s mom & dad (Ted & Carla) set up. Site listed at the bottom of this page also.

Please help us to help those who are trying to save the life of Emily and every person living with HD.

Thank you to all of our friends and family who care, YOU ARE AMAZING PEOPLE!

Please keep our family in your prayers on Saturday.

~j~j~j~j~j~

9/26/08¡K Mini update on Krystal: She has been in the Evil room 3 times this month with dehydration, the latest time being Wednesday night. It took 3 hours and 8 attempts before they got her IV going so they sent her home with the IV cath. in, incase she ended up back in the hospital the next day because they said if they pulled it, they would not get another one started.

She is doing okay and we pulled it this morning, but her doctors said she can not walk tomorrow; she has posterior tib. Tendonitis & plantar fascitis in her left foot and they are worried about her dehydrating. So, we are getting a wheelchair (her scooter died) so she can still and she will participate in the chair! She is determined to help raise $ for Emily/HD!!!

Monday, August 4, 2008 8:23 PM CDT

Well, Krystal was out of the hospital a whole week and feeling pretty okay before she went gimpy on us.

On Friday, July 11th, we were setting up a canopy for the "Mooning of the Amtrak" (yes it is what it sounds like!) and Krystal stepped off the curb and the step was a little further down than she realized and she hurt her foot. I took her to the Evil Room and they said she sprained it, but it should be feeling better within a week or so.

The following Thursday we went to Lake Elsinore to watch Emily go sky diving because she is a crazy whacko like that; and yes, Candice would have been jumping with her had it not been for her DVT. But it all worked out perfectly, Carla jumped with Emily, Candice & Ted took pictures from the ground and Krystal got to go up in the plane and take pictures from the cockpit passengers seat. Mom & I played spectators and did it rather well if you ask me! We had a great day!!

Last Tuesday Krystal had to go in for lab work. It is time to recheck the hematology stuff for the blood clotting disorders. We will get the results this Thursday. But the lab didn't have all the correct tubes they needed, so they drew what they could and said we would have to come back to get CD 55 & 59 done.
Her foot was still hurting very badly also so Dr. B ordered an MRI and again, yep, you guessed it... foot is more messed up than originally thought. She has a rip in a tendon, a chip/fracture in her heal and a "very bad sprain" to quote to foot specialist they sent her to. But the good thing is that they did not cast it; they just put it in a short ankle brace type thingy that she has to wear for the next month... oh won't THAT be fun on the houseboat!! But it's better than a cast would have been!

Friday was crazy... we left the house just before 10am, went and had Krystal's PT/INR checked (high this week), went to Candice's dr appointment to have her PT/INR checked (high also! ARG!!), then off to the foot doc, which took forever... brief stop at Cecilia's, over to the hospital lab to get the CD 55 & CD 59 labs drawn cuz the other lab never did get in the proper tubes (keep good thoughts going for NEGATIVE results!) and then in the midst of all that Krystal started crashing pretty hard so when we were done in the lab, down the hall we went to the Evil Room... and back home a little after midnight!

Saturday was a day of sleep for Krystal and now we are getting organized for the houseboat. We are getting soooooo excited; it's been a long time since we have been able to go.

I will post an update after the hematologist visit Thursday so please check back here Thursday night or Friday morning for the update.

Cecilia & Marco ~ CONGRATULATIONS on becoming U.S. citizens!!!! Your family is an asset to our country my friends!!!

General... Krystal said you are an honorary "mooner" by proxy... but next year your moon needs to shine!! :-)

Michael, keep on rockin my friend! Hope your concert tour goes well!!

Rita, Terri (both of ya), TMP 2 & Como 1 ~ think of you girls every day... love ya.

Tasha & Katie ~ Congratulations on high school graduations girls... you have the world in your hands... ;-)

Please keep my email buddy Jim in your prayers... he has a VERY difficult job which is, I am sure, VERY stressful!

Ohhhhhhhhhhhhhhhh... we are doing a 5K walk Sept. 27th for Huntington's Disease!!!! YAY!!! I will update more on that later...

New pics on photo page.
Hugs to you all ~

~j~j~j~j~j~

Ren

Wednesday, July 2, 2008 11:57 AM CDT

This is a 2 part entry... for simplicity sake, I have just copied and pasted from 2 emails I sent to my family. To all of my "nurse" friends... PLEASE email me if you have any thoughts or suggestions on this one and Marge, could you ask your experts their thoughts; I really could use some serious brain power with this one.

Sunday, June 29, 2008:
Peeps is in the hospital... don't know what's going on. Last night the girls and I were sitting on my bed eating Taco Bell and watching TV. Krystal started crying very hard and emotional and asked if the crying could be a side effect of her Marinol. Within a minute she was saying her neck and shoulders/upper back hurt and started rubbing her shoulders and then within the next minute she slumped forward, her head landing on the bed. I thought she was just leaning forward but then realized her head was on her food. I said, "Krystal" and she didn't reply... I quickly got up, went around the bed calling her name. I siad , "Krystal sit up" and she said, "I can't." I had to lift her up and she mumbled that she couldn't move. She physically could not move at all; not her arms, legs, head, nothing. I leaned her back on the pillows that were propped up and held her head in my hands telling her to look at me and focus on me. By now she was yelling that she couldn't move. Her eyes were wide, glary and starring straight ahead. It was like she was looking at me but could not see me. She started getting louder saying, " I can't move, I can't move." By now she was VERY scared and yelling, "Mommy" in a slurry voice. I told Candice to call 911 and hollered for Chuck. He came in the bedroom and he held her while I got dressed. Chuck sat and held onto Krystal trying to calm her.

Candice ~ YOU ARE AN INSPIRATION! I thank God for giving you to me!!! I love you with all my heart.
Candice was so extremely amazing... she called 911 and spoke with the lady on the phone giving her information and then handed the phone to me. By the time I hung up with the 911 operator, Candice had already printed out Krystal's medical papers. She handed a copy to me and walked out of the room. I thought I heard the fire truck out front about 30 seconds later and I walked out front. There in the driveway was Candice, handing the firemen another copy of Krystal's medical papers and telling them what had happened. She was so calm and collected and had the situation in complete control. To simply say I am proud of her would be such an extreme understatement. She was AMAZING!!!

By the time the firemen got into the house Krystal was stating to be able to move and by the time they put her on the board, she could move again. Her speech was still slurred but she was able to move her arms, legs and head.
Chuck rode in the ambulance with Krystal and I followed in the Mustang... well sort of... after the ambulance left with them, I grabbed my jacket and stuff and then I left. But I somehow managed to get to the hospital before the ambulance arrived. But in my defense, they were not running lights or siren or anything.

About an hour after arriving at the hospital, the nurse commented that Krystal's speech was improving and I agreed with her.
Krystal was admitted to the telemetry unit about 4am this morning. They have done blood tests, MRI, EKG and EEG. We are awaiting results. That is all I know right now. I need to get back to the hospital but will update when I can. And of course, in the midst of all of this, it triggered a migraine.

Wednesday, July 2, 2008:
All tests were negative which is fantastic, but we still have no definitive answer as to why this happened. The docs are "guessing" as they can not figure it out.

Peeps is coming home today. She was supposed to come home last night, but then her endocrinologist (Dr. Truong) came in to see her about 10pm and wanted her to stay till morning because she was feeling very poorly last night, very emotional and the drink they had given her to make her go to the bathroom had not worked yet and she has not had a bowel movement in almost a week... damn Gastroparesis!

At this point we are going in a couple of different directions. Dr. Ludema, the neurologist said the EEG was normal as were the brain MRI and the pituitary MRI. YAY!!!! He did say that the pituitary was "large" but he saw no tumor. Her endocrinologist is now stepping in to follow up on the pituitary issue.
Dr. Ludema "thinks" that Peeps' CO2 levels dropped way too low. Basically, he said it was like she hyperventilated. Even though she had stopped crying when the neck muscles started hurting, her crying released too much CO2 from her system too fast, causing all of her muscles to constrict and spasm, leading her to pass out. But the only way to confirm his theory is to re-create the occurrence and then checking her CO2 levels by going into a main artery. But nothing more than saying, yep that's what it was, will come of it. There is no treatment per say that can be done for this so why put Peeps through that pain. Of course, should this start happening regularly, then it will be re-addressed.

We think very highly of Dr. Ludema, he is the doc who dx. Emily's Huntington's Disease. The problem I have with this theory is that he said the muscle spasms are called "carpopedal spasms" and when I looked it up it says hands and feet spasm... and this was much more; she was basically totally paralyzed. I am having another one of those "mom" gut feelings about this one, ya know. And Smiley agrees with me... but at this time, nothing else he can do, which I do logically understand as well. So now, I start researching the net like I did with her Addison's.

The second direction with all of this is endocrine... she has been overly emotional, has gained weight in a short amount of time, and is having a couple of other issues... so, Dr. Truong is having the internist see her, do some follow up stuff and then he will see her in a week to 2 weeks as soon as labs return. He is checking her prolactin and other levels which come from the pituitary and looking for hormone imbalances.

Krystal says when everything happened, her perspective is this... crying, severe muscle cramping in neck & should blade area, vision was gone, then hearing went, and then nothing. Next, hearing came back, she could hear us but couldn't see, talk or move. Then she could see and slurry speech followed but still could not move at all. Then, she said her toes were twitching and lastly, muscular control returned and she could move her head, arms and legs. Speech was "off" for about an hour and then returned to normal.

I will keep ya'll posted in the weeks to come. Please check back here as you can for updates.

And now for my personal messages... :-)

Manda ~ CONGRATULATIONS on your engagement sweetheart! Todd is very lucky to have you in his life. You are an amazing and inspirational person and our entire family is so very proud of you. Love ya hun, Miiiiiiiike

Dave ~ Happy Birthday next week big brother. I hope your day is memorable and that you are able to relax and enjoy the day.

Gail U. ~ Happy Birthday yesterday. Girl, I was just sitting yesterday reminiscing about Palm Springs and your BEAUTIFUL yellow car... oh yes, now THAT was a fun time!

Terri D & Bruce ~ Happy anniversary tomorrow! Wow, I remember when you were sitting on that beach (a few years ago) and first met the sports enthusiast. I swear, he is the epitome of the guys you see on TV all the time watching football! LOL But what a great husband and father he is! I hope ya'll have a great day... gonna be celebrating at the river?? :-)

Como 1 ~ I hope the visit is wonderful and that you will be able to leave work a little early so you can spend time with your kid! See, notice I didn't say take time off work... I know you!! :-)

TJ ~ Between you and K, we do stay busy researching the net for new info, don't we?!! We will have our PhD's in no time at this rate!! :-)

Deanna B. ~ Hope your eye surgery recovery is going well my friend. I meant what I said, call me if you need anything!

General ~ K said maybe she'll go with your suggestion of green for the hair next time... hmmm, maybe a camo look? LOL! Oh, and the Mooning of the Amtrak is July 12th!! :-)

Manda & Christopher ~ Sneaky acquire-ette on the way???? Miss Girl, you are one beautiful pregnant woman!!

Jon & Easton ~ Oh soooo proud... what more can I say? You are both so focused with your lives. Do not let anyone distract or deter you! You are both going to go very far in your respective careers and we will always be here to support you in any way we can. Love ya boys, TMP

Cecilia ~ Next Friday our nation will proudly recognize & gain 3 new very worthy citizens! We will be thinking of you on the 11th at 11am & again at 3pm!!! This is so long over due, and I know of NO ONE who deserves to be a citizen of this GREAT nation more than you and your family! You are an amazing woman and I am so very proud to call you my friend!! I look forward to our continued "political" conversations!!! :-)
Congratulations... now just one more to go!

I hope you all have a wonderful and safe 4th of July!! Please keep our military men and women in your thoughts and be sure to say thank you every chance you get... all year long!!!

~j~j~j~j~j~

Ren

Thursday, June 12, 2008 6:27 PM CDT

Well, it has been a month since the last update and I am sorry for that. It seems like there are times I am updating often, while other times not nearly enough.

Krystal's last hospital stay was a VERY long 2 week stay and I thank you all for keeping her in your prayers during that time. The nurses in the telemetry unit were very nice for the most part, but I have to say I learned a lot about hospital protocol and procedures.

Within a week of leaving the hospital, Krystal's right arm was hurting her badly (the arm that this latest PICC line was in), so her internist (Dr. Badie) sent her for an ultra sound and sure enough, she now has a DVT (blood clot) in the right arm! ARG!

Dr. Badie was concerned with Krystal having a new DVT because she is already on Coumadin for the DVT in her left arm and a person should NOT get a blood clot while on blood thinners. So, Dr. Badie sent Krystal to a hematologist, Dr. Harris. He is very nice and easy to talk with. He ordered a number of blood tests checking for a variety of blood disorders; 18 vials later, Krystal was drained… haahaahaa, I made a funny! But seriously, she was “down” for a few days after that.
I took her back Tuesday afternoon (June 10th) to get the lab results and unfortunately some results were “abnormal.”
At this time the results are pointing to 3 different disorders; MTHFR (Methylene-Tetra-Hydro-Folate-Reductase), Antiphospholipid Antibody Syndrome, and PNH (Paroxysmal nocturnal haemoglobinuria) a rare blood disorder.

These findings have now lead to further in-depth testing and re-checking a few things (like CD 55 & CD59, antilupus coagulant, Factor V Leiden), to verify the findings.
This morning Krystal had a “PNH” evaluation test done; we get the results in about 2 weeks. Any of these blood disorders will cause a lot of problems, but the PNH is by far the most serious from what I have read.
I have learned that the treatment options for PNH are very limited; a bone marrow transplant, blood transfusions, or a medication that costs $600,000 a year (YES, REALLY!). Oh, and the medication info. lists “SERIOUS MENINGOCOCCAL INFECTION” warning also.

If you want more information, please email me…

PLEASE say prayers for Krystal and all of our family. Depending on the results of this round of tests, Candice may have to get tested as well as some of these are genetic disorders. Not sure if I am saying that correctly, but you get the drift.

I will update as needed as soon as we have any test results back… oh yes, and in true Krystal style… she has a new look! Pictures will be updated soon if not already done!

Happy birthday yesterday to “my mommy”… We love you mom!
Happy birthday next week to Miss Emily…AKA lard butt! LOL! Hey, gotta love your size NOTHINGNESS! Love you sweetie!!!

T ~ Thank you for taking so much time to help me research whenever I need information! Thank God you are awake all night to search the net and are not a wussy “B” that falls asleep by 11pm like I do!

~j~j~j~j~j~
As always, we are staying positive, focusing on what’s at hand, and we ask that everyone else do the same!!

Hugs to you all…
Ren

Saturday, May 10, 2008 1:04 PM CDT

Krystal is home!!! She came home yesterday evening. 14 day stay this time... it's been a looooong 2 weeks!

I will update more later; need to go to the pharmacy and catch up around here.

~j~j~j~j~j~

Ren

Sunday, May 4, 2008 11:06 AM CDT

Hey guys,

Here is the latest on Candice & Krystal…

Candice is now being put on Coumadin for her DVT (blood clot). Her doc wasn’t satisfied with just aspirin and couldn’t believe that the ER doc didn’t start her on the Coumadin in the first place. She will get a repeat ultra sound and recheck in 2 weeks.

She had another gastro. “attack” Wednesday night so the doc is upping her Bentyl until she can get the endoscopy done; which she can’t get until she is off blood thinners.

And last but not least, she is still waiting for an appointment to see the neurosurgeon regarding the pituitary tumor in her head.

Other than that, she is doing great! :-)

Krystal is still in the hospital. It has been a week now. She was moved to the Telemetry unit Thursday night because they are attempting a procedure for her migraines where they infuse her with Lidocaine through an IV. Once they get this line in and start the Lidocaine infusion she must be monitored continually for “cardiac complications” as they call it so that is why she is in the telemetry unit.

The problem is her IV’s keep blowing ( she had 6 IV’s in 6 days) and even with an ultrasound machine they can’t find any veins on her arm that they can put an IV in. The last line they had in they thought would hold and they started the Lidocaine infusion, but they said she "moved her arm wrong" or some bullshit excuse and the line pulled out Friday afternoon. There was blood all over her and her clothes... not a good situation. So 3 of her doctors had multiple phone conversations and the only options left were to attempt an IV in her neck or put in a PICC line. They have tried the neck before with MUCH pain being caused to Krystal, and it did not working anyway, so why repeat something that will cause distress, severe pain and most likely not work. So the only option was to put in another PICC line. This is making me very nervous as she already has an extreme DVT (blood clot) that we have been dealing with since November in her right arm.

The Lidocaine seems to be helping slightly and we are thrilled! Yesterday I received a phone call at 6:15AM from Krystal... she was laying on the floor and pushed the call button and no one answered! I called the nurses station while I had her on the line and they got someone in immediately! She apparently went to the bathroom and was walking back to bed, got dizzy and went down right next to the bed. She pushed the call button but no one answered. So, she pulled a pillow from the bed and luckily her cell phone was on the pillow and fell on the floor, so she called me. She said she laid there not knowing what to do when she went down. Thank goodness I have always told her to keep her phone on her bed with her. When I got to the hospital I spoke with the charge nurse and she said that she was the one who answered the phone when I called and she examined Krystal afterwards to make sure she was okay.

When I was walking back to her room, I was approached by her nurses from the night shift and from the previous day. Joseph the night shift nurse apologized profusely and Rochelle the day shift nurse made a comment about when her line pulled out Friday while she was up, out of bed. Ya know, I realize that things happen... but the more I think about it I have WAY too many unanswered questions... like first and foremost, why did no one answer when she pushed the call button!!

So I am thinking that maybe I need to have a talk with the head nurse. Any of you who are nurses and have any advise for suggestions for me before I talk with the head nurse... please email me!! I am always open to advise from the experts!!

Please keep positive thoughts going or my girls…

For birthdays... sorry I didn't get messages to ya'll on "your" day, but hope you had memorable days!

To my April, my Rach & (upcoming) to my Amanda... who loves you all bunches? Miiiiiiiiiiiiiiike does of course! Love you girls!

Amanda S... just think, on your next birthday you will be a mommy!!!

Joni... welcome to "my world" :-) Sorry we missed all the fun!!

Ann... hope you day was wonderful!!

ALL of our 3/5 Marines are now home!!! Woo hoo baby! We are so thrilled for them and their families! Thank you my friends for sharing the memories and the photos! Keep um coming!

~j~j~j~j~j~

Hugs you all.

Ren

Sunday, April 27, 2008 7:27 PM CDT

I am heading back to the hospital, but wanted to post an update of the weeks events. We are having a few not so good days... This is going to be an update on Krystal and a "new" post about Candice as well.

Condensed timeline:
Tuesday, 4/22:
Candice got an MRI of pituitary tumor

Thursday, 4/24:
Candice in ER with arm pain and dx. with DVT in rt. arm; she was sent home at 8:30PM
Krystal in ER with diarrhea, nausea, weakness, migraine; she was sent home at 12:30AM

Friday, 4/25:
Both girls home.
Krystal to lab for pro-time check. INR still high (3.1)

Saturday, 4/26:
Candice to doctor, referred to neurosurgeon
Krystal back to ER, admitted.

Sunday, 4/27:
Candice to ER for re-check of clot; sent home, told to come back in 1 -2 weeks.

Expanded version of above:

Candice had an MRI Tuesday to check her pituitary tumor. The last time it was checked was in 2002. They did the MRI without & with contrast. Within an hour she was complaining that her arm was hurting where they put the line in. Thursday she called her doc because it was hurting worse and he said to go get it checked at the ER. They did an ultrasound and said she has a DVT (blood clot). They were going to admit her, but sent her home and she had to come back Sunday (today) and get another ultrasound and see if the clot is getting bigger. They tried to start an IV 6 times and couldn't get one started.

Yesterday morning (Saturday) I took her to see her doc. He got her MRI results and is referring her to a neurosurgeon for her pit. tumor. She was supposed to get an endoscopy Friday for gastro. problems she has been having but obviously had to cancel. Her doc told her that the priority right now is her DVT.
I took her back to the Evil Room this morning and they did another ultra sound, said the clot is "slightly" smaller and told her to follow up with her doc in 2 days. Her arm is still hurting pretty badly so they upped her pain meds.

While we were in the Evil Room with Candice Thursday evening, Krystal got to feeling poorly and had to be seen as well.

I was running from one side of the ER to the other to be with both of my girls. They couldn't get an IV going on Peeps either or get blood for labs. They finally got a small vein after 10 sticks, but had to run fluids very slow (100ml ? per hr.) and after 2 hours the line was going bad so, they pulled it and sent her home. She has now had diarrhea for over a week and nothing is stopping it... usually Imodium works, but not this time. Her docs are doing a stool culture to test for infections, C Diff, etc. and said to bring her back to the ER if she gets any worse this weekend. I had to take her back last night about 8:30pm. The hospital was so busy they "shut it down" to 911 calls. They had 3 ambulances there, all beds full and 40 people in the waiting room. It took an hour and a half just to get Krystal triaged. Finally, around 4:30AM this morning they admitted her. She is feeling very weak and no matter what she eats, it goes right through her. They can not or will not give her anything for the diarrhea until they get the stool test results back. Her potassium levels are very low as well which is understandable and to be expected.

Please keep the girls in your prayers... :-)

Our Marine's from 3/5 have begun their arrival home. Should have everyone home very soon! Woo hoo baby!!
Please keep Cindy & her family in your prayers as well as her husband again deploys to Iraq. Cindy understands all to well Krystal's health issues; please say a special prayer for her, Pete and the family.

Need to get back to the hospital, will keep ya'll posted.

~j~j~j~j~j~

Ren

Monday, April 14, 2008 9:11 PM CDT

The temps were really up this weekend so we had "stay in" days. Krystal had to "visit" the evil room twice in the last 3 weeks and we didn't want a repeat this weekend so... lazy days watching movies it was!! We had our first experience of dealing with a cut while on Coumadin... now that was fun! Dang, I didn't realize how long a person can take to stop bleeding. We decided that Krystal needs to stay away from the kitchen knives from now on.

Some times God brings people into our lives for one reason or another, who touch our heart in a very special way. We have been blessed to have this occur more than once... Marge & Nick have been a true blessing in our lives... and Shannon & her son Nick will always hold a very special place in our hearts. I met Shannon 6 years ago when Nick became an Addisonian due to cancer surgery. We were devastated beyond belief when Nick passed away on April 2, 2006. We think of him/them often.
And then just a couple of weeks ago, I learned that another mom, Carol, has lost her beautiful son Jesse.
I also recently had the honor of meeting Cindy, an amazing woman, teacher and Marine wife who has one of the biggest hearts ever; thank you Cindy for all of your help!!! My school has been collaborating with Cindy's school on 3/5's homecoming for the last month.

I know the purpose of this page/site is to keep everyone updated on Krystal, her health, and her life, but today I want to share a little bit about Carol and her very unique Addisonian family.

I first met Carol while 3/5 was deployed to Iraq in 2006. Her eldest son Aaron, though now out of the Marines, was at the time with 3/5 on his 2nd deployment. Aaron came home from that deployment to find out he had Leukemia. Aaron has been out of the Marines for about a year now and is doing well.
Carol & her husband have 6 children, of which, the youngest 3 were born with Addison's Disease. It is so rare for one child in a family to have Addison's but the odds of 3 is unheard of.

Carol & I came to find that we share an unusual bond in that we both have children with health issues but more specifically, Addison's Disease.
Addison's Disease is a very complex disease which can exacerbate even the simplest of illnesses. A common cold may take weeks to recover from and the potential of a secondary infection setting in is very real.

In February, as the flu virus was spreading throughout the country it struck Carol's household dramatically, passing from one family member to the next until it reached her son Jesse, who is one of her 3 kids with Addison's.
On Valentine's Day, 911 was called and Jesse was rushed to the hospital; he was in a coma by that afternoon. I will not list details of the following days, but will share that sadly, on February 20, 2008, Carol's son Jesse passed away. Jesse was 7 years old. The disbelief, devastation and pain is as I am sure you can all understand, beyond measure.

Please keep Carol and her family in your prayers and ask for comfort in the days and weeks ahead.

This beautiful young man graced this earth for far too short a time and will most certainly be missed by all but I ask you this...
If you share this story of Jesse with others, as I am sure many of you will, please be sure to also tell of his amazing smile, his beautiful eyes and of his obviously incredible family that love him very much...
Let us honor and celebrate his life...

BEST BUDS FOREVER!
Jesse & his almost 3 yr old brother Matthew (who also has Adrenal Gland Insufficiency)

BIG SISTERS ROCK!
Jesse and big sister Shelah (21)

ROCKIN OUT LIKE THE BIG BOYS DO!
Playing the guitar like his 18 yr old brother David

Jesse's 2nd grade picture that was recently taken.

~j~j~j~j~j~

TMP/Ren

Friday, March 7, 2008 7:19 PM CST

Krystal was in the hospital again this week... She went in Sunday morning and came home Tuesday evening. She started crashing Friday night and we "shot her" and upped her Pred. all day Saturday. She also had a huge bruise about the size of a baseball on her leg. I spoke with a nurse and was advised to get her checked because it was hard to tell if the vomiting, etc. was a complication from/with the bruise because her INR was high or it was from her Gastroparesis. So, I took her in Sunday morning and they admitted her. She also had a migraine going and that was not helping the situation.

So now she is home and today is starting to feel better today...

Don't forget to "spring forward" this weekend!!!

Rita ~ Happy birthday Monday my friend!! I hope it is the best one yet!! And happy birthday tomorrow to Barry. :-)

~j~j~j~j~j~

Love,

Ren

Saturday, February 23, 2008 2:10 PM CST

Because I am a bit on the tired side this weekend I am just going to break the last week down chronologically...

Friday, Feb. 15th:
Krystal went to the neurologist for her migraines... upping her Topomax slightly and started her on oxygen to see if it helps. When she was in the hospital last time, she felt better when on the oxygen.
She started Domperidone, the new motility drug today!! We were keeping fingers crossed and had high hopes that this would be our miracle answer that we/she has been waiting for.

Saturday, Feb. 16th:
We went to see grandma today. We helped move her into her "new home." Krystal started getting facial/lip paralysis. By evening her cheek was twitching and starting to show signs of problems. Have not started the upped dose of Topomax, so am thinking it's the Domperidone. Told Krystal to stop the med.

Sunday, Feb. 17th:
Face is back to normal... lip and check are all better. YAY! Glad that it was a simple fix but bummed that the new med. didn't work out like we had hoped. It took months to get this med Well, back to the Marinol; it works and helps her appetite too!

Tuesday, Feb.. 19th:
INR re-check was low again, 1.0 so she is taking 7.5mg. Coumadin for 2 days and re-check on Thursday.

Thursday, Feb. 21st:
Krystal woke me up about 5AM because her left arm was hurting badly (DVT is in right arm). Forearm was swollen and red. She has a blood clot in that area too. It has been there a while but they are not worried about it because it is not deep.
Went in for INR re-check... 1.4
Went to doctor to check right arm; clot area is red, swollen and hurting. Doc is starting the Lovenox shots (blood thinner)again, but this time twice a day. Krystal is feeling terrible; BP is 90/60. Doc is glad she has oxygen at home. We are to call her if arm gets worse.
She sent Krystal over to get an ultrasound to re-check her DVT. They looked at the right arm clot also... pretty cool test to watch.

Friday, Feb. 22nd:
Right arm is in MUCH pain. Redness and swelling have increased. The Lovenox shots in her belly are EXTREMELY painful. :-( I HATE having to "shoot" her; yet she is always so brave. She is not feeling well at all and had to use her oxygen most of the day. Doc just called and is calling in antibiotic for arm phlebitis... (Hey TJ, I spelled it correctly today! Heeheehee...)

Saturday, Feb. 23rd:
Krystal started the Levaquin (antibiotic) last night. Just "shot her" in the belly again and saw that I bruised her where I shot her last night... damn it. She is feeling better today though! YAY!!

Oh, and Dr. B said Krystal can go play at Disneyland again once this right arm is better... OMG, now THAT was definitely the "positive" of the past week!! WOO HOO BABY!!!!

Happy Birthday this Sunday (24th) to my Terry!!! You KNOW I would NEVER miss your day my friend! I love ya girl!

WELCOME HOME JOHN! Okay now... 4 times to Iraq is enough!!! But hey, I must say, to come home the 4th time via medical transport is a first for even you!! :-) And to have your own escort... wow, you must be important, huh?! :-)
On a serious note guys... Please keep John in your prayers... he will be having surgery to remove a tumor in his saliva gland/throat soon... and then we will commence with the traditional celebratory welcome home BBQ for John and his men!

Oh, you all know how passionate I am in my beliefs of supporting our military... and especially our single Marines whom, many come home from Iraq and sit in a barracks room that first night home. Well, my school is once again "adopting" this cause but this time we are teaming up with another school and we are doing a "Stack the Rack" support effort for our 3/5 single Marines. We are so excited!!!

And as always, please keep good thoughts going for Larry & his family; and please say a special prayer for Kathi. She is a very special lady and a wonderful mom who needs her son home NOW! Love ya K ~

TJ, thank you so much for taking the time to research the dom. and sending me all the links! Girl, you're the best!!

Rita, as always, thank you for always being there! Who knew when we said we would be "best friends for ever" all those years ago, that it would truly extend throughout the years... I am so glad it did! Love you!

And last but by no means least... Thank you to all of you for the continual show of support and encouragement you give Krystal and our family. It means the world to all of us. I read her each and every guestbook entry and email that I am sent!

~j~j~j~j~j~

Love ya all ~

Ren

Monday, February 4, 2008 9:01 PM CST

Just got Krystal home from the evil room again... 2 more kidney stones! :-( ARG!!!!
They didn't admit her because the stones were small (2mm) and she has the bronchial
thing that is going around so they were concerned about her system already being
down and catching something else if they kept her in the hospital... so they loaded her up with steroids & pain meds and sent her home. If the pain gets too bad, I'm to bring her back.
Her INR was really low too. It was 1.4 We figured it was low when they had trouble getting blood out of her arm and into the syringe for the labs. When they finally did get blood it was so dark it looked brown; we (nurse included) thought it surely hemolyzed, but it hadn't.
So at home she is... hoping the stones pass soon! She is so tired of being in pain and hurting. Keep good thoughts going for her please!

Thank you!!!!

~j~j~j~j~j~

Ren

PS...
Please continue to keep Larry in your thoughts. WE NEED HIM OUT!!!! K ~ we will never give up on your boy!!!

Oh, and everyone be sure to vote tomorrow!!!

Tuesday, January 22, 2008 3:26 PM CST

Krystal is home!! YAY!!!

She is tired, drained and not feeling great, but it was time to try and get her out of that place! Her veins were not holding up well at all, and she was at a point where the doc & I felt we could take care of her at home as well, if not better, as they were in the hospital, especially if her last IV blew and they were doing all meds orally…
So, she is home!
Please read the journal history for information on the "events" of this past week.

~j~j~j~j~j~

Ren

Monday, January 21, 2008 10:46 AM CST

Krystal is still in the hospital, day 7... or would this count as day 8? Hmmm, whatever, doesn't really matter I guess.
Her initial IV actually lasted 6 days! But unfortunately, it blew. So last night they brought in a "rapid response nurse" to start a new one. She got a vein on the second try but as soon as they tried to flush it, it blew. They called her back and she tried again and hit an artery; that was a new experience. She then tried the side of her thumb but no go.
I talked with the nurse and asked if they could just NOT run an IV and give Krystal's arm a rest, and that's what she thought the doc would do, but of course not... the on call doc said to try one more time. So, they waited an hour or so and called an ER nurse to come up and the nurse that hit her vein last Sunday night came and he got it. He said it was very shallow and he didn't know how long it would hold and they would have to "baby" it, but it was/is in for now.
Krystal's arm looks like someone beat the crap out of her. She is so bruised up. :-(
She is still not feeling good, her temp. is running a little on the low side (even for her) and she is constantly sweating; which they can't figure out why. Her white count is almost 16 but they are attributing it to the increased steroids at this time. They are tapering her solumedrol and when then see what her white count is at.

Any way, I need to get back to the hospital, but wanted to update real quick. For details on her admit, please read the last journal history entry.

Diann, your comment really touched our hearts... thank you!!!

Terri J. & Como 1 ~ love ya girls! As always, you rock!

Rita ~ Thank you for always lending an ear... love you!

My computer has really NOT been playing nice and I am only able to get online sporadically. I will update and check back as I can...

~j~j~j~j~j~

Ren

Wednesday, January 16, 2008 5:51 PM CST

Krystal is in the hospital again...

I took her into the Evil Room on Sunday night at about 11:00PM and they gave her the “standard” steroids and fluids and sent her home about 4:00AM Monday morning hoping she would recoup.

I went to work Monday (long day on 2 hours sleep!) and checked on her throughout the day. By 8:30PM Monday night she was still vomiting and whatnot and crashing pretty badly so I took her back in and after 2 bags of fluids and steroids, etc. they decided she needed to be admitted. They got her in a room about 4:00AM. I kept asking them to give her her Coumadin as she didn’t get it Monday night, but the nurses refused to call the doctors and get orders for them… GRRRRRR.
I ran home about 5:00AM but was back at the hospital by 8:00AM trying to make sure they had everything in place and correct as far as Krystal’s meds go.

Anyway, I will update as I can.

~j~j~j~j~j~

Ren

Friday, December 28, 2007 11:29 AM CST

Well, it has been one week since Krystal vomited!!! I know that may sound kind of weird... but this is a HUGE thing for Krystal!!! She was feeling so poorly last week they thought she was headed back into the hospital.

Wednesday the 19th she saw the endocrinologist and the internist.
Thursday the 20th she saw the gastroenterologist.
And Friday the 21st she saw the neurologist.

The vomiting and diarrhea were increasing again & her blood pressure was 100/60 for 2 days (even after walking) and would not go any higher. After much conversation and collaboration, a different med was tried for her nausea and vomiting... and it worked!!! This is the longest period of time Krystal has gone without vomiting since the beginning of September! OMG!!! We are ecstatic!!! She is still having nausea, but is not throwing up.

Christmas is such a happy time for most, but sometimes it also brings a bit of sadness. Something as simple as when you pull out your decorations and find that silly little 2 foot tall silver tree that once held such happy memories, but now make you cry, it can be very difficult.

The Christmas season can be a very emotional time for many. I ask that everyone please remember this and say a little prayer for those who struggle so. This held true for the son of a friend... life was too difficult and he took his own life shortly before Christmas... our prayers are with his family.

Krystal was really wiped out this Christmas but she didn't care because she was very happy that she was home and able to be with the family. We had a wonderful time at Neen's on Christmas Eve with everyone.

On Christmas day Krystal needed to sleep so we opened presents in the afternoon. Jon, Lucy and Lucy's mom spent the day with us. About half way through opening her gifts Krystal really tired out but Chuck and Jon stepped up and helped by cutting the ribbon on her packages to ease the process for her.
It was a very special day for all of us... Krystal was home, Candice (and Taquito, the #1 Wiener dog) spent the night so they were here on Christmas morning, it was Jon's first Christmas experience (he is Jewish) and he actually had the day off (thank you USMC!), and it was the first time Lucy and her mom have been able to "do" Christmas together (Lucy's mom has always had to work on Christmas day!).

We hope you all had an enjoyable holiday and that the New Year brings many wonderful surprises and happy days ahead.

Marge ~ It was wonderful talking with you! Thank you for the offer; if we end up at Mayo I just may take you up on it!! Girlfriend, YOU ROCK!!!

Como 1 ~ I am so very happy that Mary is able to be there with you guys. I hope all is going well.

TJ ~ Vigo said he came by the hospital to see you, but you had already left!! :-) Feel better quickly my friend!!

Please continue to keep Emily in your prayers... Huntington's Disease SUCKS but Emily is a trooper; as are T & C & Jess! We love you guys!!!

~j~j~j~j~j~

Ren

Saturday, December 8, 2007 11:39 PM CST

Krystal is home... again!
She came home Thursday night. YAY!!!

This was the 5th admit since mid September... I think Krystal deserves a break... what do y'all think?!

I guess she had 2 stones this time. She passed one Friday morning and it was sent out for analysis. Should have results of it by mid week.

Wednesday, December 5, 2007 9:17 AM CST

Got Krystal home from the hospital Friday night. The weekend went okay. She was not feeling well, but that was expected. Hell, if I had a blood clot a foot long I wouldn't be feeling good either!

Monday she started having pain in her lower left side. She called me while I was at the pharmacy crying and in severe pain so I called the doctor. We took her to the walk in emergency clinic and the doc there said he thought probably a kidney stone. Her pain was constant but spiking with sharp pains on and off that doubled her up and put her through the roof.. While we were there, the pain eased up so he sent us home but with specific instructions to go immediately to the Evil Room should the pain intensify again. Well, a couple of hours after we got home, it became unbearable again so I took her in. They did a CT and said she has a 4mm stone on her left side. She needed pain meds and fluids and her potassium was low (and a few other levels) so they admitted her. We arrived at the hospital about 11pm Monday night, they admitted her about 5AM Tuesday morning and got her to a room about 9AM. They gave her Dilaudid and it was barley touching the pain. So they switched and tried a large dose of Morphine Sulfate (??) and it worked for about 10 minutes but that was it. The second dose didn't help at all so they switched back to the Dilaudid and are giving it every 3 hours.

Krystal is in so much pain that I just couldn't leave her and go to work this time... I need to be at the hospital with her!

She has been vomiting everything she eats and the Zofran isn't working. They said the next thing to give her would be the Droperidol but as that gave her an arrhythmia last time, that's not an option. Any suggestions from all my nurse friends out there???

Krystal said the pain this time is so much worse than when she had the stone in June and she never thought there could be any worse pain than that time. This time it seems to be taking longer for the stone to pass. Again, any information from my nurse friends about kidney stones would be appreciated...

Krystal was in a room with another girl but was moved late last night to a private room. Her "neighbor" (Ashley) is 20 yrs. old and has a bacterial infection in her hand from drug use. The Evil Room doctors told Ashley that she would be going in for surgery and if they couldn't remove the infection, they might have to amputate her hand! I talked quite a bit with the girls grandma and apparently Ashley had a bronchial infection pretty badly last week and just started antibiotics for it last Friday. She was coughing so badly yesterday that she vomited and they put oxygen on her to help her because her blood/ox levels were falling very low. They started her on breathing treatments. I talked with the charge nurse and explained my understanding of Ashley's situation and asked about Krystal's susceptibility to whatever this bronchial infection is/was going on with Ashley especially given the fact that Krystal's steroids are increased; they have been giving her 150mg. solu-cortef. Krystal seems to be so prone to secondary infections so I was naturally concerned. The nurse was very understanding. She is very aware of Krystal's situation... she has been there all 4 times that Krystal has been admitted since the beginning of October. Krystal was moved 3 hours later...

I need to get back to the hospital...

Please say a prayer for Ashley and her little sister as well (sister is 18). Apparently their father passed away 2 years ago and they both got into drugs very heavily. Also, keep Ashley's grandma in your prayers... she is the nicest lady and is beside herself not knowing what to do. They have tried counseling and live in treatment & rehab for the girls but nothing is working.

Joni, Pam, Meg and everyone else at work... thank you my friends for your offers of help! Your caring and concern means more than you can imagine! And Andy... dude! OMG!! THANK YOU for covering!!! You guys all ROCK!

To all of my "Marine Mom" & "Marine" friends... thank you for your continued support of Krystal and for caring about her as you all do!
DB, Krystal said to tell you, "Just wait until St. Patty's Day... you just might see the Green! But not "Marine Green"... LOL!

I am so very fortunate to be blessed with such wonderful caring friends!!!

Thank you all,

~j~j~j~j~j~

OHHH!!!! Happy Chanukah to all of my wonderful Jewish friends!!!!

Ren

Wednesday, December 5, 2007 9:17 AM CST

Thursday, November 29, 2007 0:53 AM CST

Update 12/1/07:
Krystal is home... :-) YAY! Not feeling all that well, but she's home!
Our kitty "Mouse" went to kitty heaven this afternoon...
We are saddened... :-(

Thursday, November 29, 2007:
Krystal was in the hospital in the beginning of Oct. & again in the beginning of November. They inserted a PICC line (peripherally inserted central catheter) due to the poor condition of her veins (14 failed attempts to start an IV) during the last hospital stay. She went home with the PICC line with IV fluids running until last Friday. On Monday afternoon they line was pulled because it was no longer needed and Krystal’s arm was starting to hurt pretty badly. A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then slid into the vein until the tip sits in a large vein just above the heart.

Krystal called me Tuesday and said her right shoulder hurt badly and she was having chest pain.

I called the hospital radiology dept and was advised to take her to the ER as she might have a blood clot.

So, yesterday after work we went in.

1st IV attempt failed...

The ER doctor then tried to start an IV 2 times himself... in her neck, but failed. She cried so badly; said it was the worst pain ever other than her kidney stones.

Nurse tried once more but failed. Another nurse that has hit her in the past tried and got it in her arm.

They sent her for ultra sound & CT to check for blood clots.

CT with contrast blew her vein and the arm swelled horrifically causing extreme pain in her left arm. They were thankfully able to start another IV in her left arm after all of that but had to tape her hand to a board because any time she moved even her fingers the IV would stop dripping; and she’s a lefty! So she can’t use her left hand at all because of the board and she can’t move her right hand/arm without being in extreme pain.

CT showed NO clot in lungs which they were very worried about and very happy that there was not one there.

However, ultra sound showed a VERY BAD clot in her right arm and chest... almost the entire length of vein where the PICC line was is clotted. She has a DVT(deep vein thrombosis). The radiologist even came to the ER and talked with us. He said it starts at the insertion site in her right arm in the basilic vein, runs through the axillary vein and into the subclavian vein; basically, up her arm and across her chest. I asked if he meant there was a clot in that region and he said, "No, the entire length of vein is clotted!!" He was VERY surprised by his findings as were the doctors. Everyone involved at the hospital last night was shocked at the size/length of the clot apparently. But they said no surgery, so that is good!!

The hospital is giving her a shot once a day, directly into her stomach (yuck) of a blood thinner called Lovenox (which she or I will have to do once we get her home) and they have started her on oral Coumadin. They said she will have to be on the Coumadin for 3 to 6 months. They admitted her for a day or two to get a handle on her pain and to monitor her... she was crying on and off all night long. She has pain in her right shoulder, chest, left arm from blown vein and IV, and of course, the ever lovely migraine from everything else going on. This one is REALLY rough on her; it’s probably the worst time she has had in a hospital since she had the C Diff a couple of years ago. All I could do last night was tell her I love her and gently rub her face trying to help her relax as she sobbed heavily. She clung to her dog tags as tight as she could. They and Eggbert (her stuffed dog that has been going to the ER with her since her very first hospital stay years ago) are her mainstay every time she is in the ER. Krystal so needed to just be held and comforted and I did the best I could... but some times mom just isn't who you need and I know and understand this completely. Candice was sick so she couldn't come to the hospital this time, but she text msg'd Krystal a picture and called often.

They finally got her into a room around 2:30AM. Boy, did I pick a bad time to quit drinking Pepsi or what?! I am actually functioning pretty well for only having a couple of hours sleep!

Please keep Krystal in your thoughts… she really needs all the “positive thoughts” she can get this time! She is always so positive with everything she deals and is trying to be positive right now; but it is really hard to do sometimes when you are in such intense pain, feeling so alone… and only 21 years old.

Thanks guys!

~j~j~j~j~j~

Ren

Sunday, November 18, 2007 5:13 PM CST

Oh how time flies when you're having fun... yeah that's it!
This past week has been a busy one. This is the first chance I have had to sit down and update Krystal's page. I will try and condense this as much as possible.

Thursday, 8 Nov.: The day of admission to hospital: Dr called for a straight admit, but no beds available, so she talked to Evil Room doc. We arrived around 1pm and they got her into a bed in the Evil Room within 10 minutes, but then she had to lay and wait for the PICC line tech who was working on another patient before moving her to a floor room. Well, 4 hours later, they find out the PICC tech went home... so, still no fluids going. At 6pm they sent her to radiology and the radiologist put the line in. She arrived to her room at 6:50pm... right at the start of shift change. So, her IV didn't end up getting started until after 8pm.

Her Dr. was in around 8:30pm and we talked for a bit. After much discussion about her Addison's and Gastroparesis, he thinks she should go to Mayo Clinic. He and her gastro dr. were going to talk about this. I asked about the option of Azith liquid or other antibiotics (thanks for the idea Karen) but all 4 of her "main" drs said no.

Sunday, 11 Nov.: Krystal was still not feeling great and the dr. debated keeping her longer but opted to send her home running fluids. She saw endo on Thursday and she still wasn't feeling great so he decided to keep running fluids throughout the weekend.

This time as soon as they realized the Zofran wasn't helping they put her on Droperidol. But they did not hook her up to the heart monitor this time. I questioned their not doing so but was told it was not needed. Well, when the dr. decided to send her home, he ordered an EKG and yep, you guessed it... it showed an arrhythmia! ARG!!! I was NOT happy!!

Once they got everything going though, this was actually one of the smoothest hospital stays she has had, even with the arrhythmia and all...

Sunday, 17 Nov.: Today is a day of sleep! Christopher came home from Iraq yesterday, and we were at base for 8 hours until almost 11pm waiting for him to get there! It was the WORST homecoming we have been to. The guys were offloaded from the ship at Red beach by Pulgas in small groups and came in a few at a time. It sucked! Chris was literally the last man to come in because of his MOS. There was no "food" other than cookies and brownies so Candice and Lucy went and got pizza for us about 9pm... oh what a day! BUT... he is home! YAY!!!!! He and Krystal had to have the celebratory Jaeger Bomb once we finally made it to the house. Krystal doesn't even drink those, but she said she had to have one with him to welcome him home.

Krystal goes back to her endo. tomorrow at 2pm and then to the gastro. doc at 4pm. I'll let ya know how it goes.

To my seestor Neen ~ Happy birthday (Nov. 12th! I love you! The girls said to tell you... Loff U more! :-)

To my boys ~ I hope you all received the text msg. from K on Nov. 8th... she sent that as she lay in a hospital bed! If you did not receive it, you can email me and I will forward the msg. on to you! You were all in our thoughts that day and you know you are continually in our hearts. We love ya, guys!

We wish you all a very, very wonderful Thanksgiving. I hope you all take a moment and think about all you/we have to be thankful for... friends, family, people who care about you and love you unconditionally and of course the most amazing country in the world to live in and the bravest men and women who protect it and us!!

God Bless all of us and God Bless America!

~j~j~j~j~j~

Ren

Wednesday, November 7, 2007 9:39 PM CST

Hi guys,

Sorry it has been so long between updates... got a little sidetracked with the fires and all.

Mom is doing okay since her heart surgery. We wish things were going a bit better than they are, but baby steps are okay too, ya know. :-)

Krystal has had ups and downs since her last hospital visit. Halloween evening proved to be a fun filled night. The girls all went out and Candice and Lucy commented that Krystal was the most "sought after" girl in the place. Krystal of course was not interested.

As they say in Sleeping Beauty... Make it pink; make it blue! Krystal has been wanting to dye her hair since before summer and she finally was able to get it done Sunday. No, she didn't make it blue, this time. :-) But she did go pink! The underneath is black and the top is a very bright pink. She loves it! Actually, everyone likes it so far. Diann thought it looked cool. Amanda, her brother and his friends all said they liked it when they were here for dinner Sunday night and Jon said it looks awesome! Michael (Jonathan's brother) went back and forth between teasing her and telling her it looked good, but that's his nature. LOL

Yesterday she had another migraine and started vomiting pretty badly and we had to "shoot" her last night. Once again, she told me I am fired; I just can't seem to do this without causing a lot of pain. I think I need Rob to teach me the trick. He was able to shoot her last time and she didn't even feel it. Guess I don't have that golden touch. I offered to let Candice, Chuck or Jon do it, but no takers.
Anyway, we have been able to avoid the Evil Room so far but it's not looking too good. I spoke with Krystal's doc earlier and she said if Krystal can make it till morning they can do a straight admit into the short stay unit and start a PICC line so they can get fluids in her, but the PICC tech. was already gone for the day when she called over there so if she goes in tonight, she will have to deal with the same old crap of them TRYING to hit her veins. However, she immediately added that should Krystal not be able to wait until morning to take her in immediately. She just hates seeing Krystal have to go through all the pain she does with the IV attempts.
So, we have doubled the anti-nausea meds and they seems to be staying down (YAY!!!!). Keeping fingers crossed that all goes well through the night.

Please keep my mom in your prayers. Also, Rob, Larry and the guys. The waiting game continues for Rob and Larry!!
Deanna, Terry and Rob ~ you know we love you all very much and are here for you always; any time day or night!
Kathi, Larry and Larry ~ what ever you need, whenever you need it; we are just a phone call away. Love you guys!
Leanne, Terri and Diann (and hubby's too of course!) ~ You know we are here for you and your boys. Love you all!

To my family, Brianna, Krystal's "other mom" and her "brothers" & friends who have been here for her though all of her ups and downs... you ROCK! I It is no easy task living each day worrying about someone you love who lives with chronic illnesses. It takes a special type of person to do this. Thank you from the bottom of my heart for your caring about Krystal as much as you do. No matter what's going on, you always take the time to check on her. She is very blessed to have such loving, caring unselfish people in her life who watch over her. You all will always have a home to come back to with us!! We love you!

OHHHHH... 10 days until Christopher is home!! YAY!!!

~j~j~j~j~j~

Ren

Saturday, October 6, 2007 11:32 AM CDT

Been a long week... I have been averaging about 3 hours a night sleep (amazing what the body can do when it must) so here is a condensed break down of the week. Please email me or call me on my cell if you have questions or want more details or specifics of this hospital stay. There is just be too much to write...

Monday: took Peeps into the evil room and as I was I received a phone call that my mom was being admitted to the hospital by her home (about 30 minutes from us).

Tuesday: Peeps was admitted to the hospital. She has been vomiting for a week and can not get any "good" sleep; she is totally exhausted. She has been very, very stressed for a few weeks. It took 4 nurses 12 tries to hit her vein!!!! ARG!! Had to put it in her index finger. Next option if that didn't work was her jugular vein.
Admitting doc ordered 2 meds for her that Krystal is HIGHLY allergic to! The ASSHOLE!!!

Wednesday: I spoke with Dr. Truong about a port o cath for Krystal and he said he thought we were at the point that there wasn't much choice.

Got a call that my mom was being transferred to Hoag hosp. in Newport Beach because she needed some type of heart surgery. She has critical aortic stenosis. Was given no info what that was or what type of surgery it was going to be or when the surgery would take place.

Krystal was vomiting uncontrollably for about 3 hours and zofran wasn't working. FINALLY they tried another med, Droperidol and it worked!! They had to give her a "cocktail" of meds including ativan & dilaudid and knock her out, but she was finally able to get some sleep for the first time in probably over a month!
Her IV was going bad and they brought in a rapid response nurse to start a new one. Luckily he was able to on his first try!

Thursday: Got a call at 6:45am that they were taking mom into surgery right now. They were going to replace her aortic valve. Got a call a couple hours later... had to replace the mitral valve too. apparently the aortic valve opening was only .73cm which caused the mitral valve to over work and it was leaking???? Surgery was long (like 8 or 9 hours) but went well. Plan was to remove ventilator that night, but she was too weak and dr said it needed to stay in.

Trying to get all of Krystal's docs to collaborate on the port o cath.
Candice came up about 8pm and "made" me go get food... thank you Smiley! I loff U!!
IV blew (been running potassium with her fluids) and they TRIED to start another. After 2 nurses tried 3 times I said STOP! They brought in the head nurse and she hot packed her arms for a few minutes and then found a vein... thank God!!!

Friday: They took mom off the ventilator and she is doing well. Both sides of her mouth are moving and by evening they had her up and in a chair.

Krystal's IV was hurting badly...
3 of Krystal's specialists said no to the port o cath. Too susceptible for infections and blood clots and Krystal has had blood clots in the past just from regular IV's. So, new plan... every time she goes into the Evil Room they call a "rapid response" nurse to come start the IV OR they do a straight admit and put her in the short stay unit for 24 hours. Also, EVERY TIME she will be admitted, they will automatically put in a PICC line.
Vomiting finally under control. Has not vomited all day so dr released her at about 6pm.

This week consisted of staying at the hospital until about 2:30am - 3am every night. I knew that from about 3-7am was a quiet time in the hospital and Krystal should be able to get some rest then so I would not worry as much. So I would go home, shower, sleep for a couple of hours, get up, check on Peeps and go to work... don't get me started on work, that's another very long story. When I was off work, I would go back to the hospital. Thursday and Friday I was lucky enough that my principal let me take my break & lunch at the end of the day so I could leave about 45 minutes early...

So, now we are at Saturday... Krystal is sleeping, Chuck is home to keep an eye on her so I am headed up to Newport to see my mom...

Brianna... you are the best!!! Krystal is so blessed to have you in her life. I hope you are able to move back home soon! She had the best time with you.

Como 1 ~ Girlfriend, thank you from the bottom of my heart for... wow, where would I start... thank you for everything.
Rita ~ Thank you for everything since 7th grade...
TerriJ ~ You have helped me through many nights. Your friendship is cherished!!

Thank you to everyone that signs Krystal's guestbook here or that send me emails. She does read each and every one of them!!

Please keep Krystal and mom in your prayers!!!

Just received a call from Neen... her friend Joni's mom passed away... please keep Joni and her family in your prayers!!!

Also, please continue the prayers for Rob and the others... their battle is not yet over and we still need Larry home!
3/5 is back in the sand box. We will be sending stuff to the guys through one of my boys Russ... please let me know if you would like Russ's address to mail packages to him/his men.
Christopher is on the way home!!! he is on float so it will take a while... but he will be home for Thanksgiving!!! YAY!!!
John is in the sand box for another 5 months... again, contact me for an address.
I have another group of guys leaving this Tuesday heading back over. They are from 29 P, not CP... but they could use letters & packages as well!

As always, sending angel hugs to you all...
~j~j~j~j~j~

Love ya'll,
Ren

Saturday, September 15, 2007 2:46 PM CDT

I know I am repeating myself with these next few paragraphs, but I do so with the thought in mind that we NEVER know who will be reading this page. I have been contacted by others who, after reading about Krystal, share similar experiences or who are looking for information and help. And if, by my sharing SOME of what Krystal goes through or deals with, it in turn helps someone else, then it can never be repeated too many times. So, with that said...

Between the heat & humidity affecting Krystal physically and all of the emotions (good ones this time!) of Rob being released, Krystal's body has been dealing with so very much this last month. By now we know how hard emotional events affect Krystal and factor into her well being in general; and stress is by no means her friend.
Fortunately, Krystal has learned from her past experiences, both good and bad, and knowing this, she has been adjusting her meds accordingly this past month as best as she can. Krystal knows it is like a throw of the dice... some times upping her steroids will help, but other times it will not.
There are no guaranteed quick fixes or sure fire methods of avoiding a crash or crisis with Addison's Disease; especially when you factor in the additional medical conditions that contribute to the challenges every day of living with multiple medical conditions.

We have learned what steps to take to TRY and avoid emergency room visits (or Evil Room as we jokingly call it); but we have also learned to accept the fact that there will always be unavoidable situations as well. Traumatic and emotional events are a part of everyone's life... but for a Addisonian, it can truly be a life threatening event and EVERYONE around the Addisonian needs to realize and understand the severity of such. The best comparison I give that people understand is that to a person with Diabetes, you never know when a medical emergency might arise. It is the same for an Addisonian, and the people around the Addisonian MUST be aware, 24/7!!! Krystal can some times tell when she is crashing, but not always. In fact, many times, someone around her realizes that Krystal is starting to crash before she does... and thank God they do. :-)

There are many wonderful support groups not only for Addisonian's, but for their family and friends as well! Here are two amazingly wonderful sites with EXTREMELY knowledgeable and friendly people. Even though I rarely have time any more to visit these site, I consider many of the people there my friends... Please take the time to look at these sites if you want to learn more about Addison's. Doris & NJ, thank you for these sites! And Aspen, without your original site, I would have been lost.

http://hopeoasis.org/

http://www.s12.invisionfree.com/apeoplevillage

I have met many wonderful people and learned more than I thought possible; without which Krystal's struggles would most certainly have been much more difficult! Thank you to everyone on these sites who have taken the time over the last 6 years to answer my many questions and have helped me, to help Krystal.

So, now for the update on Krystal...
Well, I sat down to write this update so many times in the last 2 weeks, but within minutes was so drained from the days events that I had to stop. I went back to work on Tuesday, Sept. 4th. The night before that Krystal had to go to the Evil Room, which was the second time in as many weeks...

The temps & humidity had been UNREAL here. Candice & I went to the store at 5pm Saturday and it was still 103 out. The store even had huge sheets of heavy duty plastic over all of their "open" cold cases, ALL meat was in their walk in refrigerator and in their deli case they had big blocks of dry ice. Obviously, they were having a problem with their refrigeration, but it was CRAZY!!!

Anyway, the heat was terrible all weekend long and Krystal struggled terribly. In the late evening/night she would do okay because it would cool down into the 70's outside, but during the day the coolest we could get the house was 89. But it was the humidity adding to the heat that was hell! We could not even cool Krystal's room adequately. We ran the portable air conditioner 24/7 (I will hate to see my electric bill!) the temps in her room were not anywhere close to where we needed them to be.

Monday afternoon she was so hot and weak that we put her in the shower to cool her down. Rob was continually checking on her and had to "shoot" her (100mg. solu cortef) by late afternoon, but it proved only to be a temporary fix. By 10:00pm she was crashing fast and she said she needed to go in. Rob helped get her to the car and off she and I went once again. When the nurse finally hit her vein (first attempt in her wrist, they literally hit her wrist bone!) they ran the standard fluids, pain meds, tests, etc...
It turned out that she had a bladder infection on top of the dehydration and so began the quest for an antibiotic that she wasn't allergic to. Eventually, they ended up giving her Levaquin. But overall, it was a quick trip to the Evil Room; we were home by 2:30AM and I was off to work at 7AM! What a way to start the new school year, huh?! :-)

The temps have cooled down dramatically since then which has really helped. Krystal is slowly rebounding and we are keeping our fingers crossed that the Levaquin works and she has no reactions to it.

Rob was finally able to take leave almost 2 weeks ago and flew to Hawaii (that's where Terry & Deanna live). They all flew to WA. this week. We are so thrilled for their entire family! Krystal has not talked with Rob since he left, but she knows he is having fun with his family and friends. This is a LONG awaited and much overdue family reunion!!! Deanna, Terry, Rob, Kayla and Mike... HAVE FUN GUYS!!!! WE love ya!!

Deanna, hope your birthday celebration is one that will hold cherished memories for years to come!

To mom, my seestors, bro's & Gail S., Deanna, Rob and Terri J. ~ Thank you all for your birthday greetings! You guys are the best and you all totally ROCK!!! You all made my day!! Gail & Deanna... loved the personal serenades! :-)

To Joni, Corey and all of my friends at work... thank you for the memorable birthday!

To Smiley, Peeps, Jon and Chuck ~ Thank you for spending the evening with me! Peeps... clean house in the morning was THE BEST way to start the day! Smiley... your massage to end the day... what can I say, you are AMAZING!!
I love you all!!!

Please keep the good thoughts & prayers going for my very dear friend Kathi, her family and especially for her son Larry who is still in the brig. Pray for a favorable decision by General Mattis for all of the guys very soon!

Christopher should be home from Iraq in about 2 months & John deployed for his 4th time 2 weeks ago. Please keep them both in your prayers!!!

Rita, I love ya girlfriend and I totally apologize for the last two times you called and I had to run take those other calls. I am so thrilled that your surgery went so well. We have been through much together in the 35 years we have been friends! I love you!
Everyone please keep Rita in your prayers as she goes through chemo treatments...

I will close with this thought. It is part of a comment posted to Krystal on the guestbook page here by her cousin April, but is so profound in my opinion, it bares being repeated here... thank you April!!!

God has a plan, trust me, if he had one for me he's got one for you!
Just remember that silver lining on the cloud isn't very big but it is the prettiest part!

~j~j~j~j~j~

Ren

Wednesday, August 22, 2007 7:00 PM CDT

(Okay, first off...
WELCOME BABY AUBREY ALBERS TO OUR FAMILY!!!!!

CONGRATULATIONS JOSH & CRYSTAL!!!

'Grandma' Sheila and Aubrey.

More new photos on the photo page...
Sorry it has been so long between updates. Krystal has once again been on the rollercoaster ride. Some of it due to good news and other due to not so good. It is very strange how emotions, good and bad, play such an extraordinarily large roll in/with Krystal's Addison's disease. For the sake of time and space, I will give you the bottom line first... most of our Marines are now home! First Trent, then two weeks later Magic!
But one, Sgt. Larry Hutchins is not home yet. :-( We are still fighting for Larry and ask that everyone continue to do the same. When Krystal heard the terrible news that Larry would not be coming home right now to his family, she was so shocked and upset for all of them, and within a short time, she had to up her steroids (Pred.).
Then the following Monday when we learned that Jerry and Tyler were released, our hopes were raised for Rob... which, on Friday. Aug. 10th, became a reality. The last one to come home was Rob, which of course was extra special to Krystal. YAY!!
We are so overjoyed for all of these Marines and their families!

Krystal's emotions have been in overdrive for the last three weeks at least. She has been upping her pred. here and there but last Saturday we had to "shoot her" with her emergency injection. In fact, Rob shot her and she said it was almost painless. Hey, he's hired! :-)

By Monday night, Krystal really started to go down and the extra Pred., anti nausea meds etc., were not working and by Tuesday afternoon the decision was made that it was time to head to the Evil Room. Her migraine was starting to rage, and the nausea, vomiting, diarrhea, and weakness were intensifying and she felt very dehydrated. The nurse actually did pretty good. She hit the vein on the first try. But, the blood draw didn't go well so another nurse came in a while later and stuck her again for blood; but he got it on the first stick! They gave her a total of 2 bags of fluids, 5mg. Dilauded, 5mg. Zofran and 100mg. solu-medrol. Four hours later, we were on the way home.

Needless to say, today is a lazy day. :-)

Rita ~ I'm here 24/7... as close as the phone girlfriend!!!
Terry ~ Your phone call was a total surprise... you ROCK!
Gayle ~ GIRL!!! YOU SOOOOO CALLED THIS ONE! You were right on the money baby! Thanks for getting me to "think ahead!"
"Alaska" Kim ~ Thanks for the reminder to update the page! :-)
Loree` ~ OMG, congrats on Sarah! You and Ralph are amazing people to do what you do!
Kathi ~ Anything... any time! You know this my friend!
TMP 2 ~ HAPPY BIRTHDAY last Saturday!
Diann ~ Enjoy ALL of your kids being home!!!
Terri ~ I'll be waiting for that update email or phone call Thursday! And HAPPY belated BIRTHDAY!
Como 1 ~ The "family" time was so cool... it ROCKED!
Josh & Crystal ~ She is so beautiful!!!

~j~j~j~j~j~

Love ya all,

Ren
------
Mini update... Aug. 23rd
John & Lucy had their baby this morning... what a busy week in the baby department!
Congratulations Sgt. John & Lucy Detamore!

(August 23, 2007- Welcome Baby Lucia Detamore!)

John and his new baby girl...

Thursday, July 19, 2007 8:11 PM CDT

Krystal is home from the hospital. YAY!!!!!!!!!!!!!!! Please say a prayer that she continues to improve and has a better summer than last year! Her veins need a rest. She was poked over a dozen times in a 4 day span and her arms are so bruised and very sore. The doctors discussed again the PIC line or port o cath but they said it is a last resort thing because of her infection rate factor. Her IV only lasted a day and a half this hospital stay before they had to start a new one. And as soon as they got the second one going (after 3 separate nurses poked her) her arm was hurting almost immediately, even with the very small tubing in.

Please say a prayer for Rita, my bestest friend since 7th grade. She is without a doubt one of the most amazing women I have ever known, now raising 4 of her grandkids all on her own. She is going through some pretty hard core medical things right now.

Also please continue to keep ALL of our Marines of the "Pendleton 8" and their families in your thoughts and prayers. This battle is far from over for our boys and their families.

~j~j~j~j~j~

Love,

Ren

Monday, July 16, 2007 3:53 PM CDT

Krystal was admitted to the hospital last night. They are going to give her fluids and all that fun stuff for a day or two. It took 5 sticks to get the I.V. going. I went rounds with one nurse after Krystal and I both asked her NOT to try and start the IV in the bend of Krystal's arm and she of course tried there anyway and didn't hit it. I ended up going to the charge nurse.
I sent Easton a message telling him that she was being admitted, and 4 hours later he and Shannon showed up and sat there with us for hours. Thank hun!
Will keep ya'll posted. I kept the post below from yesterday afternoon...

Sunday, July 15, 2007 11:05 AM CDT

Krystal spent 8 hours in the Evil Room Friday night... they debated admitting her, but chose not to...

Last Saturday she got too much sun at Neen & Frank's pool party. We all thought we had an eye on the situation, but obviously, not a close enough eye. She was not even red when we went home but by the next day, she was hurting pretty badly. We saw Dr. Truong on Tuesday and he had us up her Pred. Bu Thursday night I had to shoot her with steroids. This was the first time we have had to use her injectable steroids at home. She said I did way better than the nurse at the office last time she had to be shot; I was much less painful!

I will add more later, but wanted to get a quick post on here to update ya'll.

~j~j~j~j~j~

Love,
Ren

Sunday, July 15, 2007 11:05 AM CDT

Krystal spent 8 hours in the Evil Room Friday night... they debated admitting her, but chose not to...

Last Saturday she got too much sun at Neen & Frank's pool party. We all thought we had an eye on the situation, but obviously, not a close enough eye. She was not even red when we went home but by the next day, she was hurting pretty badly. We saw Dr. Truong on Tuesday and he had us up her Pred. Bu Thursday night I had to shoot her with steroids. This was the first time we have had to use her injectable steroids at home. She said I did way better than the nurse at the office last time she had to be shot; I was much less painful!

I will add more later, but wanted to get a quick post on here to update ya'll.

~j~j~j~j~j~

Love,
Ren

Tuesday, June 26, 2007 11:40 AM CDT

Hi guys,

Well, summer is here and along with it the warmth, which as most know, is not Krystal's friend. So far she is doing okay and we think we are prepared. But we also know that each summer brings new learning experiences and new lessons in the art of living with multiple health afflictions.

A week after Krystal got out of the hospital she ended up in the Evil Room (ER) again. We had gone down to see Rob and she was hurting so badly we had to leave. We didn't even make it off base and she said she thought she might need to go in to ER. Within minutes of getting on the fly., she was in such intense pain that I called 911 asking them where the nearest hospital was. Ends up she had a kidney stone. Luckily is was small enough that they said it should pass on it's own; so they drugged her up and sent her home. She is doing much better now.

Her hair is still falling out in massive amounts and is becoming very thin. The dr. had her try Rogaine saying it works really well, but it triggered her migraines terribly so she had to stop using it. They are now having her try something else for hair and nails called Bio-tin (sp??). Keep your fingers crossed that it works!!! She said if it gets much worse, she is going to just shave her head. She told Rob this and his reply was that she would look sexy. Gotta love his attitude!!!

Krystal talked with Dr. Truong about the possibility of a port-o-cath implant because the Evil Room doc always suggest she consider one because her veins are sooo hard to hit. He said he doesn't not think it's a good idea for her because of how easily her PIC lines got infected, DAMN! What should have lasted months, lasted only 3 days the first time and barely 2 weeks the second...

Oh, so check this out... Blue Cross (our insurance carrier) has a pilot program they are trying out in So. Cal. They chose 300 people and assigned a "home" doctor that can be called any time 24/7 to come to the home if needed. The idea is to hopefully avoid hospital visits which in turn of course saves them money. And out of the THOUSANDS of people they insure, you guessed it... Krystal is one of the 300 they chose to be a part of this program! We have the dr.'s cell number and he will come here any time we need.
Now, if the BONEHEADS at Blue Cross would realize that the $600.00 they WON'T authorize for Krystal's Botox injections every 4 or 5 months for her migraines would save them money in droves!!! One Evil Room visit is between $2,000 & $3,000 every single time! Geez, they will pay this dr. around $400 every time he comes here, no matter how often, but won't cover preventive procedures! Whatever...

We are very busy this week... Dr. appointment today, mailing packages to Christopher & Billy in Iraq and preparing to join a "bike" ride and rally in support of the 3/1 Haditha Marines on Thursday. Chuck and Krystal can ride... I'll take the car, thank you very much. :-)

Please continue sending good thoughts and prayers for my niece Emily & the family; and for a break through in the medical field for Huntington's Disease treatments and a cure!!!

Rob's birthday is next Tuesday, July 3rd and we are asking everyone to send him a birthday card. If you are interested in sending him a card, email me for his address.
Magic, Trent and Larry go to trial soon and it would be very nice if you could send them cards or notes as well... again, email me for more information and their address!

As always, please keep our 3/5 boys in the brig in your prayers, as well as their families!
We need ALL of these Marines to be home with their loved one's!! My friends need their son's home, my daughter needs her fiancé, these wives need their husbands and these kids need their daddy's!!
Deanna, Leanne, Kathi, Reyna, Erica, Diann and Terri... stay strong!! You know we are here for you!!

Also, please keep the Marine's and families of 3/1 and MARSOC who are going through similar ordeals in your prayers. As I have said before, I do not know any of them personally, but judging by what our men and their families have been through, I know they all need our prayers too.
And last but not least, please keep Christopher, Billy and all of 3/1 in your prayers while they are in Iraq.

Belated HAPPY BIRTHDAY TO EMILY! LOVE YOU Lard Ass!!!!!!! :-) Hope your day was perfect babe!!!!!!!!!!!!!!!!!!!!!!!!

HAPPY BIRTHDAY...
Today, June 26th to Mark, Jane's husband...

Friday, June 29th to Terry! Hey Terry, how do you say happy birthday in Hawaiian??? :-)
Next Tuesday, July 3rd to Rob... Terry & Rob, my birthday wish for you both is that next year Rob will be celebrating his birthday at home!!!

And happy birthday this month to my big brothers, Dave (July 8th) & Ted (July 30th)! Love ya bro.'s!!
Dave... Hope you and Connie get to spend it together and that this will be the first of many years of celebrations for you and Connie!
T... Dude, we need to do Mexican food!! :-)
Love you both!!!!

And finally, here's hoping for a relatively quite and clam summer with NO Evil Room visits or hospital stays!!!

I hope you all have a relaxing, fun and safe 4th of July!!!

~j~j~j~j~j~

Hugs to everyone,

Ren

Tuesday, June 26, 2007 11:40 AM CDT

Hi guys,

Well, summer is here and along with it the warmth, which as most know, is not Krystal's friend. So far she is doing okay and we think we are prepared. But we also know that each summer brings new learning experiences and new lessons in the art of living with multiple health afflictions.

A week after Krystal got out of the hospital she ended up in the Evil Room (ER) again. We had gone down to see Rob and she was hurting so badly we had to leave. We didn't even make it off base and she said she thought she might need to go in to ER. Within minutes of getting on the fly., she was in such intense pain that I called 911 asking them where the nearest hospital was. Ends up she had a kidney stone. Luckily is was small enough that they said it should pass on it's own; so they drugged her up and sent her home. She is doing much better now.

Her hair is still falling out in massive amounts and is becoming very thin. The dr. had her try Rogaine saying it works really well, but it triggered her migraines terribly so she had to stop using it. They are now having her try something else for hair and nails called Bio-tin (sp??). Keep your fingers crossed that it works!!! She said if it gets much worse, she is going to just shave her head. She told Rob this and his reply was that she would look sexy. Gotta love his attitude!!!

Krystal talked with Dr. Truong about the possibility of a port-o-cath implant because the Evil Room doc always suggest she consider one because her veins are sooo hard to hit. He said he doesn't not think it's a good idea for her because of how easily her PIC lines got infected, DAMN! What should have lasted months, lasted only 3 days the first time and barely 2 weeks the second...

Oh, so check this out... Blue Cross (our insurance carrier) has a pilot program they are trying out in So. Cal. They chose 300 people and assigned a "home" doctor that can be called any time 24/7 to come to the home if needed. The idea is to hopefully avoid hospital visits which in turn of course saves them money. And out of the THOUSANDS of people they insure, you guessed it... Krystal is one of the 300 they chose to be a part of this program! We have the dr.'s cell number and he will come here any time we need.
Now, if the BONEHEADS at Blue Cross would realize that the $600.00 they WON'T authorize for Krystal's Botox injections every 4 or 5 months for her migraines would save them money in droves!!! One Evil Room visit is between $2,000 & $3,000 every single time! Geez, they will pay this dr. around $400 every time he comes here, no matter how often, but won't cover preventive procedures! Whatever...

We are very busy this week... Dr. appointment today, mailing packages to Christopher & Billy in Iraq and preparing to join a "bike" ride and rally in support of the 3/1 Haditha Marines on Thursday. Chuck and Krystal can ride... I'll take the car, thank you very much. :-)

Please continue sending good thoughts and prayers for my niece Emily & the family; and for a break through in the medical field for Huntington's Disease treatments and a cure!!!

Rob's birthday is next Tuesday, July 3rd and we are asking everyone to send him a birthday card. If you are interested in sending him a card, email me for his address.
Magic, Trent and Larry go to trial soon and it would be very nice if you could send them cards or notes as well... again, email me for more information and their address!

As always, please keep our 3/5 boys in the brig in your prayers, as well as their families!
We need ALL of these Marines to be home with their loved one's!! My friends need their son's home, my daughter needs her fiancé, these wives need their husbands and these kids need their daddy's!!
Deanna, Leanne, Kathi, Reyna, Erica, Diann and Terri... stay strong!! You know we are here for you!!

Also, please keep the Marine's and families of 3/1 and MARSOC who are going through similar ordeals in your prayers. AS I have said before, I do not know any of them personally, but judging by what our men have been through, I know they need our prayers too.
And last but not least, please keep Christopher, Billy and all of 3/1 in your prayers while they are in Iraq.

Belated HAPPY BIRTHDAY TO EMILY! LOVE YOU Lard Ass!!!!!!! :-) Hope your day was perfect babe!!!!!!!!!!!!!!!!!!!!!!!!

HAPPY BIRTHDAY...
Today, June 26th to Mark, Jane's husband...

Friday, June 29th to Terry! Hey Terry, how do you say happy birthday in Hawaiian??? :-)
Next Tuesday, July 3rd to Rob... Terry & Rob, my birthday wish for you both is that next year Rob will be celebrating his birthday at home!!!

And happy birthday this month to my big brothers, Dave (July 8th) & Ted (July 30th)! Love ya bro.'s!!
Dave... Hope you and Connie get to spend it together and that this will be the first of many years of celebrations for you and Connie!
T... Dude, we need to do Mexican food!! :-)
Love you both!!!!

And finally, here's hoping for a relatively quite and clam summer with NO Evil Room visits or hospital stays!!!

~j~j~j~j~j~

Hugs to everyone,

Ren

Sunday, June 10, 2007 3:34 PM CDT

Well, Krystal just experienced the hospital stay from HELL. I will break it down and shorten this as much as possible, but it is still going to be lengthy. Sorry it took so long to post this. I have been a bit on the tired side by the time I get home every night. I just went back to work the Friday before Krystal ended up in the hospital and have been running on minimum sleep for the last 2 weeks... but I am good to go and catching up as quickly as I can! :-)

5/28/07:
She had to go into the Evil Room Monday night, May 28th in the middle of the night. She had been there a week and a half before and her arms were still bruised from the first four failed attempts to start her I.V. that trip. And as always, the attempts this time were no joy ride. Then the Evil Room Dr. decided that even though she had vomited over 50 times in the 3 hours prior to my bringing her in, she did NOT need steroid replacement and after 2 bags of fluids, nausea meds and pain meds was going to send her home. Her vomiting had subsided immensely, but had not stopped. I voiced my opinion (nicely) that Krystal in fact DID need IV steroids. The Dr. called Dr. Truong, who of course told him she needed the steroids and that she also needed to be admitted.

5/29/07:
The decision to admit Krystal was made at about 6:30AM. I had to leave to go to work at 7:15AM. Leaving her laying there in the Evil Room all alone was one of the most difficult things I have had to do in a very long time. At one point she called me in tears because a situation and comment made by one of the Dr.'s. I called the nurses station, talked with the Dr. and addressed the issue immediately. Krystal was in a room with two beds but no other patient in the room.

5/30/07:
Came to hospital about 5:00pm and there was a lady in bed 1. She said her name was Kristy and she had cirrhosis and encephalitis staph infection in her leg. She was scratching her leg constantly and commenting how much she itched and how VERY contagious she was and that she had had this once before also. When Krystal’s nurse Danielle came in I asked if she knew that the other patient had staph and she was not aware because Kristy was not her patient. Danielle went out and talked with the charge nurse and within 5 minutes they moved Kristy to another room. They moved her bed, her tray/table and even the night stand next to the bed. Housekeeping came in immediately and wiped down the room and the bathroom.

I spoke with the charge nurse and told her I wanted it documented in Krystal’s file that she had been exposed to staph in case Krystal got it. Kristy had been in the same room most of the day walking around (no footies on), using the same restroom, touching the bathroom door handle, toilet handle, sink, etc...

When I told DR. Truong about this he was very surprised. Later that night, Krystal got a new roommate. Mrs. Garcia.

5/31/07:
Arrived at hospital about 4:45pm. Krystal said the nurses aide, Carthell, had been having her use the same "toilet hat" when she went to the bathroom as the lady in bed 1, Mrs. Garcia. He walked in just then and I asked him about it and he said yes he had and that it didn’t matter that they were “sharing” the same pan. OMG!!! You have got to be frigging kidding me!!! I told him in no uncertain terms that yes id did matter.

I then went to the desk and spoke with the day charge nurse and told her what he had done and said, and she said that it most certainly was not okay to share pans.

I also asked her to check that the “staph” incident had been documented in Krystal’s file and she said she was certain it had been. I told her that it was totally unacceptable that “Kristy” had been in the same room, using the same bathroom, touching the door handle, bathroom sink faucets, etc, as Krystal and that she shared the room for hours because it was marked on her white board how much she had eaten for lunch which meant she had been in the room for some time.

She then told me that the test results had now come back and were negative and that Kristy did not have staph. Right, like they would tell me if she did?!! And the fact that Kristy herself told us that this was not the first time she had it... hmmmmmm.

I asked how they could have put a patient whom they "thought" to have staph infection in the same room with a patient whose immune system was compromised, especially when she is being given 150mg. solumedrol every 24 hours which would affect her system even more. She said that there was really nothing else they could do and said something about no beds and I replied, “NO WAY!” “There is ALWAYS something else that can be done or another “bed” found. You DON’T put people who may be contagious in a room with another patient, especially with one who is on high doses of steroids and considered a high risk patient!
When Dr. Truong came in I told him of my conversation with the charge nurse and also about the toilet seat “hat” and he said that it absolutely was NOT okay for patients to share “hats.” He was not a happy camper.

6/1/07:
Dr. Adamany came in (Gastro. Dr.) and let Krystal come home because most of her vomiting had subsided.

6/8/07:
Krystal saw Dr. Adamany today . She is still having some gastro problems and stomach pain. He is giving her rx. stuff like Miralax; they think the pain is Gastroparesis related. She also had her first bad migraine since getting the Botox.

6/9/07:
We went to visit Rob today. Just as we arrived Krystal's stomach started to hurt badly. We were there seated by 1:10pm or so, but had to wait for Rob to come out. By 1:15pm Krystal had to go out because she wasn't feeling well. Rob came out about 1:20pm or so and Krystal finally came back into the gym about 1:30pm. Within 5 to 10 minutes she was having such sharp pains in her abdomen they we had to leave. Before we even got off base she was in severe pain. I was on the fwy maybe 10 minutes and she said she couldn't wait and needed to go to the Evil Room (ER). I ended up having to call 911 to find the closest hospital. They did an abdominal CT scan thinking maybe appendix but it turned out to be a kidney stone, but not big enough to have to be admitted. They drugged her up, told her to see her dr. Monday and sent her home.

6/10/07:
The pain has been coming and going since yesterday. Thank goodness for it being intermittent. Krystal has an EXTREMELY high tolerance to pain, so when she is hurting, we know it's pretty bad. She really misses Rob and is totally bummed that she was not able to spend more time with him yesterday and can't at all today, especially after not being able to see him last weekend either as she had just been released from the hospital. He calls to check on her whenever she is not feeling well, and just talking with him on the phone helps her a lot.

Well, there's my book for the week folks... as always, I will keep you posted on the ever changing events!

Please continue sending good thoughts and prayers for my niece Emily & family and for a break through in the medical field for Huntington's Disease treatments and a cure!!!

Please keep "my/our boys" in the brig in your prayers as well as their families! This HELL needs to end! Magic, Trent and Hutch are all going through motions hearings. Please pray that they go well.

We need ALL of these Marines to be home with their loved one's!! My friends need their son's home, my daughter needs her fiancé, these wives need their husbands and these kids need their daddy's!!

Also, please say a prayer for the Marine's and families of 3/1 and MARSOC who are going through similar ordeals!! I do not know any of them personally, but judging by what our men have been through, I know they need our prayers too!!

Happy birthday Monday, June 11th to my mommy!!! :) She's the best mommy in the whole world and we all love her bunches and bunches!!!!

~j~j~j~j~j~

Love and hugs to ya'll ~

Ren

Wednesday, May 2, 2007 9:55 PM CDT

Hello all ~ :-)

Sorry for so long between updates. I am finally starting to feel better after my surgery... it was NOT fun!!!

Krystal changed the photos on the picture page.

Well, Krystal is doing okay. She was in the Evil Room on Sunday, April 29th and even after 3 bags of fluids & 100mg solumedrol she was not feeling well. They sent her home, because the never admit her unless they absolutely have to. She saw Dr. Truong the next day and he ended up giving her another 100mg. solucortef. This was the first time she has had her steroids injected IM rather than through an I.V. It was VERY painful for her and hurt for quite a long time after the injection. She really was not feeling well.
Last Saturday she was feeling better so Candice drove her/us down to see Rob. She had not been able to see him in 2 weeks and really wanted to go. She was so happy to be able to sit and talk with him and just hold his hands. They really make each other laugh and smile. She did pretty well, but then it got rather warm in there and it kind of drained her. She was not able to make it there Sunday; she slept all the way through to Monday, getting up for a few minutes at a time and that was it. We also had to pass on a BBQ at T & C's... but we have learned and everyone knows, we take life one day at a time because we never know how Krystal will be feeling. She is feeling much better today though, pretty much back to normal. YAY!!!! :-)

We have a few very special prayer requests for you all and any prayer groups you may belong to or know of...

My beautiful niece Emily (pic or her & Krystal on photo page) was recently diagnosed with Juvenile Huntington's Disease. Emily is 18 years old.
Huntington's disease (HD), also known as Huntington disease and previously as Huntington's chorea and chorea maior, is a progressive, rare, inherited neurological disorder affecting up to 8 people per 100,000. This disease "usually" affects people when they are much older, but then again... so does Addison's Disease. Krystal has kindly offered to share her bubble with Emily. These are most certainly our one in a million girls!!! Please keep Emily, Ted, Carla and Jesse (her bro.) in your prayers!!!

Please keep Chris in your prayers while he is deployed.

And please continue with special prayers for the Marines who are unjustly in the brig, but especially for "our boys", Rob, Magic, Trent and Larry, and for their attorneys too! Anyone wanting updates on our boys please email me privately.
Deanna, Leanne, Kathi, Reyna, Erica, Diann and Terri... stay strong and know that we are here for you in any way we can help!!!

Happy belated birthday April (April 23rd) & Rachael (April 30th).
Hey Rach, Miiiiiiiike sends love, hugs and kisses!!! :-) Heeheehee!
Happy belated also to Amanda S. (May 1st).
Love ya all, girls! Hope your birthday's were memorable!!
Oh, Chuck & I just celebrated or 28th anniversary (April 21st)! YAY US! :-)

Thank you all for being such wonderful friends and family and for the continual support you show Krystal and all of our family each and every day.

~j~j~j~j~j~

Love ya all!

Ren

Thursday, April 12, 2007 3:09 AM CDT

Sorry to be so long between updates!

As you can see, Krystal put a new photo up. She also put new pics on the photo page.

Krystal's migraines have been so bad and frequent that after her last Evil Room visit a few weeks ago she decided to bite the bullet and try something kind of new... she got Botox injections for her migraines! This was done at the neurologists office and of course, insurance denied it, so her first SSI "paycheck" went entirely on the injections. He did about 15 injections total. If all goes well, the effects should last 4 to 6 months. We will keep ya'll posted on how this works for her.

Check out this web site. It belongs to a lady with Lupus. Addison's and Lupus mirror one another in many aspects including fatigue and energy, or lack thereof. She has an AWESOME analogy explaining daily life for someone with a chronic illness like Lupus or Addison's. I hope you will take the time to read it. It will give you insight into Krystal's daily life...
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
If that doesn't work try this one and look on the left side of the page for the link that says "Spoon Theory"... http://butyoudontlooksick.com/

Krystal did a fundraiser recently to help Rob and that kept her busy for a while. She is now focusing on getting him books and magazines. If anyone wants to send him a magazine subscription, please email me for details on how to do so.

Two of our Marines, Chris & Billy shipped out with 3/1 Tuesday. We were able to go to base
Monday afternoon and hang out for a bit with the guys before they headed to San Diego. A couple of our old 3/5 boys came & hang out too. We did not go down to port Tuesday morning because we wanted to give Chris and Amanda (his new wife of 2 months) and her family some time together.
We did dinner with everyone here Sunday night though. Chris wanted spaghetti, so spaghetti it was. That's a first for me on an Easter Sunday! :-) But it was great! There was so much laughing and clowning around that we all had tears from laughing so hard. It was awesome!!
Please keep Chris, Billy and all of the guys in your prayers.

Happy Birthday Chuck (April 11th)!!!! Love you babe!
Lucy... thank you for making dinner and taking care of everything for dad's birthday dinner!! You ROCK!

I am having my surgery Thursday (3/12/07) so am hoping to be feeling better very soon! I'll keep ya'll posted on that too... :-)

~j~j~j~j~j~

Ren

Tuesday, March 13, 2007 9:17 AM CST

Hi guys ~

I am so overdue with an update on everything going on here, but there have been so many turns and changes recently that before now, anything I wrote would have needed addendums almost daily. So, rather than writing multiple and separate emails about Krystal and Rob, even though this is a bit lengthy, here is the condensed version of the past month.

A YEAR AND 8 MONTHS!!!! OMG, that's how long it took, but KRYSTAL'S SSI WAS APPROVED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! FINALLY!!!!!!!!!!!!!!!!!!!!!! WOO HOO BABY!!!! I could not believe it when they called, I thought they were calling with more questions, but happily... I was wrong! We are soooooo thrilled; she has waited so long for this.
When I took Krystal in to sign all the paperwork I asked what illness the approval was based on and the lady looked at the paper and said it said, "Chronic migraines and other autoimmune illnesses." There was NOTHING specifically about her Addison's or Gastroparesis... I was really hoping they would have acknowledged one of the two, but at least she was finally approved!

We finally went over Krystal's bone density scan with Dr. Truong last week. She does not have Osteoporosis but does have Osteopenia. He gave her a nasal spray that is basically calcium. He said she needs to use it daily whenever she has to up her Prednisone.

In the 5 years since Krystal was dx. with Addison's Disease she has learned that she is most certainly affected by stress; but it is not realistic to think that she can avoid stress her entire life. She is learning to adjust her meds. accordingly to help her through stressful times so she can continue on to the best of her ability.
She knows there will undoubtedly be times in her life when stress will be so great that simply upping her meds might not do the trick and she might end up in the hospital. If she does, it will not be the first time and most definitely will not be the last. There will always be events throughout her life which will require her to make the decision to take the "safe" route and sit by idly, or choose to participate and take the chance/risk of ending up in the hospital.
Krystal said it is all about picking her battles; she must decide what people and events in her life are so important to her that she will choose to take that risk ... and being there for Rob is one of those events, because he is that important to her.

Over the past few months, as Rob and Krystal became closer, there was much discussion as to how Krystal might be affected by the stress of everything Rob is going through, how his trial could affect her physically/medically and how she did not want to divert any focus from where it should be. The focus obviously needed to be on Rob and his case, and she was very concerned, not wanting her health issues to cause any problems or distractions for him or from the proceedings.

Krystal has been able to see Rob every weekend and on holidays. I can not elaborate on any details of the case other than to say that Rob took a plea deal to avoid the possibility of spending the rest of his life in prison, as you all know. Rob's legal battles are far from over; but please know that there is much more to this story than you have read. And I know it will not surprise you to know that we have seen MANY "erroneous" reports printed in the press.

Krystal and I were able to be in court with Terry and Deanna during Rob's proceedings. Boy, I'll tell you what... Terry and Deanna are two of the strongest people I have ever met!! The press reported how the courtroom was silent as Deanna spoke, which it was. But what they couldn't accurately describe was the emotional impact that Deanna had on that courtroom. The incredible love for Rob expressed by both she and Terry touched and moved so many people. Rob, Kayla and Brandon are so very fortunate to have such wonderful parents!

Rob's defense team was made up of four attorneys. One is a civilian, hired by Terry and Deanna; and the other three are active duty military assigned to the case by the government. They are all very caring, compassionate men and I thank and applaud each of them for their tireless efforts in not only defending and representing Rob, but also for taking the time and assuring that Krystal's medical needs were addressed and met. Everyone has been amazing! General Brahms, Major Hackel, Major Woodard and Lt. Cmdr. Perdue... I believe that as parents, you all understand where I am coming from... Thank you gentlemen, form the bottom of my heart!! :-)

As I said, Krystal did pretty good for the most part throughout the proceedings. Saturday night, after everything was over, she crashed pretty hard but was so proud of herself for making it through the week. She ended up in the Evil Room (that's what we call the E.R. for those of you who do not know) at Scripps in Encinitas early Sunday morning and all the staff there were remarkable! Wow, I wish we lived closer to that hospital; what a great place. We arrived there between 8 and 9AM Sunday morning. She got the usual fluids, steroids, nausea & pain meds. and was discharged by noon. They were awesome!!

Rob has now been moved from Camp Pendleton to Miramar. Cards, post cards and letters of support for Rob are as important now as ever.
Rob has the same sense of humor as Krystal... so "funny" cards are okay too; he loves to laugh!!! If you are thinking of sending a card or note his way but not sure what to say, tell him you know us or just say hi and send your support! It does not need to be a 3 page letter or anything like that.

Please email me privately for Rob's mailing address if you would like to write him.

Rob can now receive paperback books sent directly from us/you. How cool is that?!! Or as before, you can order directly from a publisher like Amazon.com.
From a publisher, Rob can receive paperback or hardback books, magazines and CD's. If you decide to send him any paperback books from home, please let us know so we can be sure Rob adds your name to his mailing list. If you order any magazines for him, please let us know which magazine you are ordering, so we can tell him to add the name of the magazine to his list of "expected" items.

Infantry Marines (or "grunts" as they are called) are trained to do a specific job. When called upon to be so, they are rough and determined fighting men; pugnacious sprits if you will. They are very well trained Marines! But they are also kind, gentle and caring guys. Every time Krystal goes to the Evil Room, Candice makes one phone call and the guys have a network of phone calls that are made letting everyone know that Krystal had to go in again.
None of us will ever fully understand what these men have been exposed to, witnessed or been required to be a part of while they were in Iraq. But we ALL agree that NONE of our Marines should be in the situation they now find themselves in. Our family personally knows Rob, Magic, Trent and Larry and we know that they are not only outstanding Marines but upstanding young men! And as such, we must step up and show our support for them and I ask that you do the same.
I am not asking you to support this war or the current administration; I realize that everyone has different opinions of the war and of our president but rather, I ask that you support the men themselves!

The next step in Rob's case will be a clemency request. And right now, the best way to show your support of Rob would be to write a letter to General Mattis on his behalf requesting the general to reconsider Rob's sentence and requesting the lightest sentence possible. We are hoping to get letters from as many people as possible from all across the United States (or further!). You do not need to know Rob personally to write a letter. If you are interested/willing to write a letter, please contact me ASAP and I will give you details and the name/address of Rob's attorney that your letter or email should be sent to.
Thank you all for your support of Krystal throughout the years and now for your support of Rob, Magic, Trent, Larry and the other Marines as well.

Oh, quick side note... I think most of you know that I had emergency surgery the week before Thanksgiving to have my gallbladder removed. My recovery from that went well but I have been off work since then because I have been so anemic and have been to a few different doctors trying to figure out why. I have been on mega doses of rx. Iron but every time they run labs my iron levels are fluctuating, but still have not elevated into the "normal" range. They are also having trouble getting my thyroid back in range, but we're working in it.
I ended up at the GYN and after an ultrasound they thought I might have cancer. I had biopsies and last week found out that they were benign (YAY!). They are pretty sure that my anemia is related to "female" problems so I will be having surgery again very soon (hysterectomy) which will hopefully rectify this anemia problem and I can get to feeling better and have more energy.

HAPPY BIRTHDAY RITA & TERRY! You are amazing women, amazing moms and my best friends for the last 35 years! DAMN girls, we're old; doesn't it ROCK!??!! I love ya girlfriends!

Please keep Chris and all our Marines who are preparing to once again deploy, in your thoughts and prayers!!!

~j~j~j~j~j~

Love,

Ren

Tuesday, February 6, 2007 8:41 AM CST

Well, we finally got an appointment with SS!!! Went in yesterday and took ALL of Krystal's medical records that I have here. Our meeting lasted well over an hour but by the end, they agreed to "reconsider" her case!!!!

So today I am going to copy ALL of her medical records and take them to the SS office. They could just request the records from Krystal's doctors and hospital's but as I already have them, this will expedite things.

We should hear something with 8 weeks maximum. When I asked how long till we get an answer, the girl said her supervisor told her to mark this priority and that she wants it out of there and taken care of ASAP. Hmmmm... I guess it takes a year and a half to make it to the priority list, huh??!! :-)

So, please keep good thoughts going for this to go quickly, smoothly and to get approved!!!

And on the family home front...
Happy Birthday on the 8th to "Uncle John" and also Grandpa B!!! We love you guys!!!

As always, please keep Rob, Magic and the guys in your prayers!!
Hula Mom & TMP 2... Girlfriends ~ you and your hubbys deserve awards!! You have more courage and strength than most!!!
Leanne, Deanna, Diann, Terri, Erica and Reyna... You are all amazingly strong women. Hang in there girls!!!

~j~j~j~j~j~

Ren

And remember...
Why be hurtful and say mean or negative things to or about others? Negative comments and remarks will change nothing, serve no positive purpose and you just might push loved ones and friends away from you with your actions. Think before you speak or before you hit "Send" on that mean or accusatory email you wrote.
If there is no POSITIVE point or purpose... just let it go!

Life is much better and easier when you try and be nice... :-)

Tuesday, January 23, 2007 6:32 PM CST

Not much new to report on the SS disability; we are still waiting to hear their decision.

Krystal has been doing okay for the most part since her last hospital stay. She is still fighting a migraine that has been coming and going for weeks now, but she has been able to avoid the Evil Room so we are counting this as a victory!! :-)
The taper down process of her Prednisone this time was for some reason a hard one. Not sure why, but this time it seemed a little rougher on her than usual. Maybe because of all the emotional stuff she's going through at the same time; I don't know???? But she is strong and determined and handling everything so well.

She has been able to visit Rob every weekend which of course makes her happy, puts a smile on her face and definitely lifts her spirits; and her visits seem to do the same for Rob!
Please keep good thoughts going for Rob, Magic, Larry and Trent. And of course for their families and the families of all our guys!
Oh, and please remember 3 things...

1. There is ALWAYS more to a story than a newspaper reports; even if or when they quote people, you are not getting the entire conversation!!!

2. There are extenuating circumstances that we the public will never be made aware of with all of this. We will NEVER know the whole/entire story and quite honestly, there is no justifiable reason or need for any of us to know it! It is NOT "our right" as United States citizens (or people from any other country for that matter) to know what every other person does at work... so why in the world do people say they "have a right" to know all the detail of something??? Shut the Front door... You do not!

3. Why be hurtful and say mean or negative things to or about others? Negative comments and remarks will change nothing, serve no positive purpose and you just might push loved ones and friends away from you, with your actions. Think before you speak or before you hit "Send" on that mean or accusatory email you wrote.
If there is no POSITIVE point or purpose... just let it go!

Life is much better and easier when you try and be nice... :-)

~j~j~j~j~j~

Love ya'll,
Ren

PS: Jon is home safe from Iraq!!! He arrived home last week after a year deployment. YAY!!!!
Jon's group arrived around 11:30pm and by the time we left base it was a
whole 38 degrees out. For us native Californians... THAT'S COLD!!!
We froze our butts off!

It was an awesome sight though! They had the Sunday flag raised (OMG,
I want one!!!) and the entire UMA lot was encircled with flags from
every state... it was sooooo cool!!!!

Saturday, January 6, 2007 12:52 AM CST

Krystal is once again home from the hospital!!! YAY!!!

We went to the Evil Room Wednesday night and she was admitted for severe dehydration. She had very bad diarrhea and vomiting for 3 days that we could not get under control. They put her in isolation because they thought she might have C Diff again from the antibiotics she was on for the abscessed tooth she had a couple of weeks ago... but alas.... she did not! And again I say YAY! Then, it was a reverse isolation because they didn't want any "bugs" getting to her...

Anyway, she is home and that's good! Now she starts the fun taper of the steroids. She had just tapered back down after the abscess and root canal and now has to do it again... not fun. Her dr. wants her to do 40mg. Pred for 3 days, then 20mg. for 3 days, 10mg. for 3 days and then back to 7.5mg.

Okay... so EVERYONE.... this is VERY important!!!!!
Be VERY careful about this flu bug that is going around!!!!! BOTH of my sisters ending up in the hospital this week with dehydration from it. Sheila was lucky that she was on the "fast track" and they let her go home after giving her fluids and meds. Neen was admitted for a couple of days. It is a REALLY bad bug!!!!

Everyone take care and stay healthy!!!

Love ya!

~j~j~j~j~j~

Ren

Saturday, December 30, 2006 11:53 AM CST

Happy New Year's to you all ~

It has been a busy two weeks...
I had a "face to face" on Dec. 22nd with a person at the SS office. He was actually very nice and seems to be pulling for Krystal so keep good thoughts going!!! He said he should have an answer for us within a week on her appeal so we are hoping for good news in the mail next week.

Krystal has had a migraine going for 2 weeks now... found out last Thursday that she had an abscessed tooth and she was sent over right away for a root canal... the infection was apparently pretty bad and they could not finish the root canal that day but put her on antibiotics and she goes back next week to get it finished. She is on dilaudid for the migraine and is upping her Prednisone. So far, it is enough to keep her out of the Evil Room which of course is a priority.

My mom was admitted to the hospital last weekend. She was very anemic and was given 4 units of blood over 3 days which have worked to raise her levels back up. She is still there but they finally found the problem yesterday and it is cardio related so now we are waiting to hear what her cardiologist says. Please keep her in your thoughts!

We hope 2007 brings much happiness to you all. We especially hope and pray that good things will happen for Rob, Magic, Trent and Larry... and their families and loved ones. We love you all and you know we are with you 100%!!!

Love to you all,
Ren

Tuesday, December 12, 2006 1:30 AM CST

As you can see, Krystal put up a new picture. It's one of her & Rob's favorite holiday photos. Check out the photo page; they're all new as well. Some are more recent than others, but they are all "new" on this site, so we are calling them all new pictures. :-)

Yesterday (11th) was Candice's 26th birthday and today (12th) is Krystal's 21st!!! YAY Candice & Krystal!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The girls spent part of the day at Disneyland yesterday and even had brunch with Lilo & Stitch. Krystal was not feeling great but as they have been planning this for some time she was determined to go. They had to cut the day short and as soon as they walked in the house Krystal had to lay down. We are hoping to go out to dinner tonight to celebrate both birthdays but we will have to see how Krystal is feeling this evening; and Friday the plan is to go country dancing. Krystal will finally be able to get into the Stampede without the big black "X's" on her hands... as you can imagine, she has been looking forward to this for some time... :-) The girls have had this birthday celebration planned for months!!!
Yesterday started the birthday marathon in our family... besides the girls birthdays we have... Carla (21st) & Steven (22nd) before Christmas, Sheryl (26th) & Jesse (28th) right after Christmas and finally we ring out the year with Sarah and Frank who both have birthday's on Dec. 31st!! So to all our family who are celebrating this month... Happy Birthday!!! OH... and Sheila & John... Happy Anniversary! Can't forget that!! Oh, Oh... and more happy news on the family front... more CONGRATULATIONS to Sheila & John; they are going to be grandma & grandpa!!! Well, I guess I should say congratulations to Josh & Crystal too... lol.... just kidding Crystal.... CONGRATULATIONS Josh & Crystal!!! We are all so excited and love you both!!!!

Okay, so... now "health stuff"... :-)
Krystal has been feeling okay lately... she has had a lot of "roller coastering" going on, but no Evil Room visits since Nov. 17th! WAY YAY!!!!! However, this past weekend there were a couple of "incidents" that occurred that really upset her and unfortunately, as you all know, emotional stress wreaks havoc on her body due to her Addison's. As I mentioned, when the girls got home from Disneyland, Krystal had to lay down and sleep. She slept until almost 10:00pm and then got up. She ate a small amount of food but within minutes was feeling worse and spent the next 3 hours doubled up and in extreme pain. And of course, most of this 3 hour time frame was spent in the bathroom. She was determined NOT to spend the first hours of her 21st birthday in the Evil Room though. This continual domino effect from the Gastroparesis and the Addison's Disease every time she doesn't feel well totally sucks. By 1:00am, she was able to lay down in her bed. The phenergan, the "doctored up" Gatorade (yay Marge!!!) and the added steroids worked. She was/is totally wiped out and very weak but was able to avert the Evil Room!! YAY!!!!!!!!!!
Hopefully, the rest of her birthday will go better than the start of it, but if not... we will just celebrate when she is feeling better!!

We are still waiting on word about her social security disability. We applied for her permanent disability in Sept. 2005 and she was denied. We appealed it in Dec. 2005 and they said it could take quite a while to hear back. Well, after months they finally admitted that they lost her appeal papers so in Sept. (2006) they said we had to fill out papers all over again. We went in 2 weeks ago and spoke with a person in the office and they told us we should hear something by the end of December! So now... we are once again waiting for an answer! Please keep good thoughts going for this to get approved!

Jon ~ I know Iraq is not where you would choose to be for Chanukah and most certainly not how you would choose to spend it, but know that you are in our hearts and will continue to be in our thoughts until you come home! We love you & miss you!!!

Loree' ~ Happy early birthday my friend! :-) We are keeping you, Jason and all of your family in our prayers!! I hope you are feeling better by Sunday!

We hope you all have a joyous and peaceful Holiday this year! Please say a prayer for all those serving this great nation of ours who, for various reasons, will not be home with their families and loved ones during the holidays.

Love you all,

Ren

Monday, November 27, 2006 11:09 PM CST

Hope you all had a wonderful Thanksgiving... ours was most certainly different than we had planned :-) but very nice, none the less!

Krystal has been very busy the past few weeks between caring for me after my surgery and a trip of her own to the Evil Room intertwined in the midst of all my medical issues.
She was able to spend a few days in the Oceanside vicinity though... and those were rather enjoyable days for her so that was nice!

I will update this page as soon as I am feeling a bit better...

Hugs to you all.

~j~j~j~j~j~

Ren

Wednesday, November 8, 2006 7:54 PM CST

Krystal spent the night in the Evil Room again last night... 3 nurses, 1 lab tech, 8 sticks (attempts to start the IV), and 9 hours later she came home.
I felt badly because she had been at school with me all day helping with a "special" event. We had 12 Marines and 3 Corpsmen from 3/5 visit in honor of Veteran's Day.
She was very dehydrated and the nurses really had a rough time trying to start the IV. They thought they hit the vein good on a couple of tries but it justed flashed and then nothing... They ended up using a "preemie" IV needle and even had trouble getting that to work. Once they actually got the IV needle in the vein they decided not to even try for the blood draw because they couldn't even get enough blood out trying to drip the blood into a "baby" tube on one attempt.
Krystal's potassium levels were low so she is once again back on oral meds for that for a few days (8meq). She also had a migraine which over the hours and the many failed IV attempt intensified to the point that the Dilaudid was barely working.
But alas... everything eventually worked as it should and she is back home.

YAY!

HAPPY BIRTHDAY SUNDAY TO MY SEESTOR... I LOFF U NEEN!!!! ((((MUAH!))))

Love you all,
Ren

Mini update: Friday, Nov. 10th...
Krystal has pretty much slept since coming home, which was to be expected. She is feeling much better this morning! WAY YAY!

Ren
PS: HAPPY BIRTHDAY USMC!!!!

Wednesday, October 25, 2006 9:03 AM CDT

Krystal was coughing and not feeling well for about a week, kind of doing the roller coaster thingy again.
Her internist and endo are now in the same office and it is GREAT! We called last week and within no time at all the internist called back. They put her on Z pack as a precautionary and 20 minutes later her endo. called, said he spoke with Dr. Lee (internist). Dr. Truong (endo) tripled her Pred. also.
She slept pretty much from Thursday until Sunday afternoon. She couldn't even make it to visit Bob Saturday which bummed her out because visiting Bob and the guys is a priority to her.
She got up Sunday afternoon and felt pretty good... YAY!
She was feeling pretty good that evening and went with Candice and "the gang" to Knott's Scary Farm. They had a blast! She was doing pretty good Monday... she slept a lot but that is normal for her after "an outing."
Last night she started feeling crappie again and the nausea and vomiting started. She is feeling really bad this morning so we are once again upping her meds. (Pred.) and as always, we will monitor her.

Please keep the good thoughts coming for Krystal and for "our boys" (Marines)!!

Ohhhhhh... our friend Dusty completed ANOTHER marathon!!! She completed the Grand Teton Trail Marathon in 5 hours, 33 minutes AND she continues to raise money for NADF (National Adrenal Disease Foundation)!! Dusty... you are an amazing woman and inspiration to MANY! YOU GO GIRL!!!

~j~j~j~j~j~

Love ya all,

Ren

Thursday mini update:
Krystal is feeling better this morning!
No vomiting in 24 hours. YAY! :-)

Thursday, October 5, 2006 10:22 PM CDT

And yet... another fun filled evening in the Evil Room! Or should I say fun filled night??? Went in before 9pm and got home just before 4am this morning.

Labs showed she was once again dehydrated. Hmmmmm, ya think???
So...
2 bags fluids, steroids, pain meds., nausea meds.... blah, blah, blah...

The 1st nurse got 2 tries but of course couldn't hit Krystal's veins and so the quest began. The quest to find a nurse that had tried before and actually could hit her veins. 45 minutes later Christine came in and got it on the first try! WE LIKE CHRISTINE!!!! :-)

Right now it is 8:20pm but feels like midnight... we be tired tonight... think it's time to go hug my pillow. :-)

Hugs to you all!

~j~j~j~j~j~

Ren

Saturday, September 30, 2006 1:24 PM CDT

Round 2 with the antibiotics...

The drs. think the SIBO is back already... so they are having Krystal do another 10 days of the Xifaxin. Then it will either be zelnorm in small doses or "probiotics." Krystal is VERY hesitant to take the probiotics because that's what she did the 1st time she had the SIBO and ended up with the C Diff.
So, we shall see what happens...

Casper came and got Arwen (Krystal's black lab) this week. She is now in Texas. The day she left was a very emotional day for us; especially for Krystal... Casper, take good care of "The Bobo"!!!

Please keep my bro. Dave in your prayers... he is having a rough time right now with his medical problems... and he so deserves to feel good!!!!!! He has been dealing with crap for too many years. I love ya bro! Hang in there!!!!!

Okay, off to Oceanside now... going to see our boys. As always, keep good thoughts going for them too please!
:-)

~j~j~j~j~j~

Ren

Tuesday, September 19, 2006 7:40 PM CDT

Had to make an Evil Room run Sunday night... Krystal's migraine was actually doing better but Sunday she started feeling poorly and then she crashed. They gave her the typical... IV fluids, steroids, nausea meds., etc... and sent her home. It is ALWAYS good when we can bring her home!!!!
She slept all day Monday and today she is feeling a bit better; still a little drained but better. YAY!

Our friend Dusty ran another race on Sept. 16th... the Horseshoe Challenge -20K and she dedicated it to Krystal! OMG, I cry every time I look at the picture of Dusty holding up her sign that reads, "THIS ONE'S FOR KRYSTAL!"
Check out the pics on Dusty's photo page for the Horseshoe Challenge on her web site
http://www.addisonssupport.com/

THANK YOU DUSTY!!!!
Words do not adequately express how deeply touched we are by this! OMG... We are amazed by you!!!

~j~j~j~j~j~

Ren

PS: Casper called... he was indeed on leave :-) He is taking The Bobo next week... We will miss her :-( but she will be well taken care of and most certainly loved. :-)
~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, Sept. 21st:

Mini update...
Endo appointment went well.
He wants her to get a flu shot... apparently this season is expected to be a bad one and she obviously qualifies as a "priority" in getting one. He wants to wait a couple of weeks until she is feeling better; she is still very tired and recouping from this Evil Room visit.
He is doing a bone density scan in a couple of weeks as Krystal has now been on steroids (and quite heavy/large doses many times) for over 5 years so she will probably get the flu shot when she goes in for the scan.

Thursday, September 14, 2006 8:23 PM CDT

Let's start with the great news...
The bacterial overgrowth in Krystal's intestines is gone!!! WOO HOO BABY!! YAY!!!!!!

And now the not so great news...
Krystal is not feeling well. She started a pretty bad migraine Tuesday evening. She had an appointment with the new internist yesterday, Dr. Lee, (we really liked him!!!) and she wasn't feeling too well while we were there. Her blood pressure was a little low at his office... and today, it is no better, her migraine has intensified and she is starting to crash. We are trying desperately to keep her out of the evil room right now. Her neurologist called in an rx. of oral Dilaudid for the migraine and Chuck just went and picked it up. We are hoping that it works!! She is taking phenergan for the nausea and is sleeping as much as possible...

Keep good thoughts going, please...

Casper was supposed to come and get Arwen (AKA "The Bobo") a couple of weeks ago but never showed up and we have not heard from him... not too sure what's up with that...???
Krystal sent him an email but he has not replied back. I hope all is okay with him and he is just busy having fun on leave... I am a bit worried about him.
If he can't take the Bobo, I guess we are going to have to start looking for someone else to love her like we do... :-( which is a bummer because she really loves Casper. If any of ya hear from him, please let us know.

And to end on a positive note...
CONGRATULATIONS to Dusty H.... an "Addisonian" friend who JUST RAN A FRIGGING MARATHON!!!
YOU GO GIRL!!!!!!!!!!!!!!!!!!!!!!!! YOU SO TOTALLY ROCK!
Krystal said to tell you that you are truly amazing!!!!
Ya'll should check out Dusty's web site...

http://www.addisonssupport.com/

Click on the marathon update and be sure to check out the amazing photos too... I think my favorite photo is the one of the girl's hubbies holding up the signs for "team we suck!" Now THAT right there's funny... I don't care who ya are!

Love you all,

~j~j~j~j~j~

Ren

Friday, Sept. 15th...
Thank you all for the birthday greetings, phone calls and emails yesterday!!!
To "my mommy" & my seeeestors... I love you all! Neen, Bobbit & Johnnie... I am so very lucky and truly blessed to have such a wonderful mom & sisters (and my bro's are pretty awesome too! LOL!). You ALL really are the best!
Chuck, thank you for the beautiful card.
Peeps~ Waking up to a clean kitchen... life does not get much better than that!
Smiley~ Late night dinner with my girls and then a back massage... now that's a perfect way to end the evening.
"Dum kid"~ birthday text message first thing in the morning & a singing birthday call at the end of the night... what a wonderful start and end to a wonderful day!
Leanne, Deanna, Karen & Gail... what can I say... you are the greatest friends!!
TMP 2 ~ Your birthday email totally put a smile on my face; especially the "subject" title!!!!
Hula Mom ~ The personal birthday song and phone call ROCKED!!!!
Not Provided~ LOVED the email card with the yellow (my fav.!) roses on it!
Gail~ Loved the poetry in the email... guess I should go open the envelope now; huh??? LOL!

Thank you all!!!!!!

Saturday, September 2, 2006 12:27 AM CDT

Hi guys,

We got the results back from Krystal's "Lactulose Hydrogen Breath Test" and she once again has the bacterial overgrowth or SIBO as it is called. For simplicity sake, here is a site that you can read about it for better understanding if you are interested. The "editing" doctor on the article, Dr. Jay Marks, is actually one of Krystal's 3 gastroenterologists.

http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

The last time she had SIBO she was given Cipro which gave her the C Diff. (Clostridium difficile) that landed her in isolation in the hospital for almost 2 weeks. We will never forget that... I have never seen an ER staff move as quickly. In a matter of 15 minutes (literally!) her temp went from 99 to 103, BP went from like 130/90 to 93/38, and her oxygen level dropped from 98o 60 We NEVER want a repeat of the C Diff!!!!

She is taking an antibiotic called Xifaxin (rifaximin) for 10 days and will then repeat the breath test to see if it is gone. This antibiotic is not "absorbed" so her dr. said the chances of her getting the C Diff are "extremely rare" HOWEVER... as Krystal seems to be that oh so rare one in a million person with most things, the dr. said he will monitor her very closely for symptoms. All things considered, she is feeling pretty good.

Today is our day to go visit Bob and Magic... and after that we are celebrating Easton's birthday... at Chuck E Cheese! Happy 22nd birthday son! :-) Today is also Easton's first day of his "terminal leave" from the Marine's... he is returning to civilian life after 4 years in the Marine Corp. which included 2 tours of Iraq. Easton, thank you for CHOOSING to serve our country... you are a true hero!

Please continue to support our CP 8 and keep them in your prayers. Unfortunately, most of the media are totally twisting comments and taking remarks out of context... the LA Times even had mistakes about Magic's age and how many times he has been to Iraq. They can not even get something as simple as an age and service record correct; but they expect us to believe the rest of their story is accurate????
And, in turn, another newspaper ran an article saying "the LA Times reports..." There was even a caption by a photo of Magic saying "Two Marines Admit Killing Iraqi Man" when Magic NEVER did this!! OMG!! Anyway, please continue supporting our guys... and remember... you can't believe MOST of what the media reports!! If you read the LA Times story the other day, please let the editor know that you are not happy about their inaccuracies!

D ~ Happy Birthday Girlfriend (Sept. 3rd)!!! Smiley says, "Happy Birthday Super Mom" & Peeps says, "Happy Birthday Hula Mom."

I hope everyone has a wonderful relaxing long weekend!

~j~j~j~j~~

Love ya'll,
Ren

Wednesday, August 23, 2006 11:15 AM CDT

Well, we got into Cedar's Sinai last Tuesday!!!! I was waiting to update you all until I had a bit more information, but decided to update you where we are at presently...

The Gastro. specialist she saw last week said that Krystal's Gastroparesis is idiopathic; kind of like her autoimmune diseases... it all just means they don't know what caused them.
Most people who have Gastroparesis are diabetic whereas Krystal is the opposite... she has Insulin Intolerance w/Hypoglycemic episodes.

At this point, he told her that she needs to eat 8 times a day and pretty much needs to eat foods that will go through her system easily. He gave her a 15 page guideline on what and how to eat and even told her to "puree" (literally!!) ALL meat she eats... OMG... this is insane.

She was supposed to go back last Thursday but she came down with a really bad cold. They want to do a 2nd hydrogen breath test on her to see if the SIBO (small intestine bacterial overgrowth) she had once before is back. The antibiotic she was put on before for that is what almost killed her when she ended up with C Diff. from the antibiotic. So, once this cold is completely gone, she will go back for this test.

Anyway, at this point, all we can do is the hardcore diet modification until she can do the breath test to see what that shows... and we will go from there.

Krystal is allergic to the main meds they give people for Gastroparesis (like Reglan) so she is very limited in what she can take. The dr. told us about one med that he said has shown to work very well, but it is not sold in the USA; it is called Domperidone.
So... road trip!!!???? :-) Hmmmmm... maybe????? He said it is only available in Canada and maybe Mexico... but I need to do a LOT more research on this drug before taking that option as well; and there ARE some major side effects from it that he told us about. I know all drugs have side effects, but it is still something we need to weigh in decision making...

A final option (one we do not want to do) is surgery where they place a gastric pacemaker in her; but they also would have to put in a feeding tube in her belly to administer her meds. One of the main problems right now is that they are not able to regulate her meds. because meds have to get into her intestine to be absorbed (the stomach does not absorb meds; that happens in the intestines)... and they can not tell how long her meds are sitting in her stomach as there is no consistency in timing as to when her stomach "works" and when it does not. The dr. also said that Krystal should have any and all meds that are available in liquid form that way because the body can absorb liquids much easier. It is all rather confusing.

I will let you all know what we find out from the Hydrogen Breath test when Krystal is able to get it done...

~j~j~j~j~j~

Happy Birthday (last week) to Leanne, AKA TMP 2... Girl, you are one of my bestest friends and I love ya!! :-)

Love,
Ren

PS: Please keep my friend Carol and her family in your prayers...
Carol is an amazing mom of 6 kids; 3 of which have Addison's and her oldest son Aaron is one of our Marines from 3/5 Lima Co. Aaron and our other Marines of 3rd Battalion 5th Marine Regiment just returned from Iraq Aug. 6th... YAY!!!!!!!!!
On Friday, August 11th, Aaron was dx. with CML which is chronic myelogenous leukemia. Their family was/is understandably in shock...
Carol lives in Texas and Aaron was able to fly home last Friday night and is now home with his family. Aaron's care has been transferred to a very good military medical facility in Texas; this is good... he will be with his family as he starts this journey.
Please keep Aaron, Carol and their entire family in your prayers...

Also, please continue prayers and support for our Pendleton 8!!!
We visited Bob and Magic last weekend; as we do every weekend. Spirits are up among all 8 of the guys... but they need our/your continued support! Please pass the word to others about these Marines. Anyone can email me privately at tmpmarinemom@cox.net and I will send you sites/links to read more of what is happening to/with these Marines. These men are defenders of our country and of our freedom... some, decorated Purple Heart recipients, yet they are confined to a brig and are treated like convicted criminals. Please... help us to help them...

Thursday, August 10, 2006 11:57 PM CDT

Just got home from the Evil Room... when they drew Krystal's blood the nurse commented on how dark the blood was... it was really weird... I've never seen it so dark before! The Evil Room nurse said it had to do with being dehydrated. But her labs were mostly in range; which surprised everyone! Hmmm?????? Any of you nurses out there... I would appreciate your input/opinion on this one.

They gave Krystal 2 bags of fluids, meds., etc... and sent her home. She is still vomiting but we are trying everything we can to keep her from being admitted because we (the Dr.'s and us) know there is nothing else they can do other than run fluids for a while and just end up sending her home days later in the same condition.
Her veins are so bad at this point that they would most likely end up with another PICC line or shunt... and she really HATED having the PICC line in. She said that after a few days it really hurt.
At 4:00pm today when she was vomiting she said she could taste her meds she took at 7:30AM this morning which meant her meds have been sitting in her stomach all day. Man this Gastroparesis sucks!
I spoke with Cedars today... their first opening is October 3rd, but they are putting her on their cancellation list so hopefully she will get in sooner.

~j~j~j~j~j~

Love ya,
Ren

Wednesday, August 9, 2006 9:29 AM CDT

WE HAVE THE REFERRAL... FINALLY... FOR CEDARS-SINAI MEDICAL CENTER!!!
WOO HOO BABY!!!!!

I received the paperwork yesterday to the Motility Program at Cedars yesterday afternoon. I am calling them first thing this morning to set up an appointment. YAY!!!
Please say a prayer that Krystal gets in quickly and all goes well.

This past week has been long and very draining on Krystal; but a great week still. Our boys are once again home from Iraq. More YAY!!!
Between decorating, poster making, sign hanging and actual homecomings (we were there for 3 of the homecomings) we were going strong for days. Krystal worked very hard all week long and late into the night more than once. She was determined to make and hang her signs. The first 2 that she and Candice hung up were stolen within 3 hours... so she had to make another... but the next one went up at the barracks.
We were able to meet many of the parents and family members of the guys; it was VERY cool!
A couple of "the mom's" are nurses and it was so cool because they understand Krystal's health issues and they helped keep an eye on her. They know that just because she "looked good" didn't really mean she was feeling well. Many people always assume that if a person looks fine they must be feeling fine; which is an understandable assumption because with healthy people this is the case.
I think the difference with Krystal is that by the time she starts "looking" poorly, she is in actuality already very ill and is in fact usually crashing. Some times this takes days and other times we have seen it happen in less than 30 minutes.

Krystal did pretty good for the most part until Sunday. It was overcast most of the morning and we didn't realize it but she got pretty sunburnt and also got dehydrated. I think that, in combination with not enough sleep all week long hit her all at once.
Last time she was admitted to the hospital we (Drs. & I) discussed our "plan" for the next time (because there is always a next time) she got dehydrated... which of course includes the standard... lots of Gatorade, upped steroids, etc... but, once again they are not working too well.
I am calling the endo. today to see how he wants to handle this this time; but I am guessing we will be making either a dr. office visit or Evil Room run before days end...
So, as always, I ask that you keep good thoughts going and I will keep you posted.

Please keep "Benji" and his family in your prayers. He is one of our Marines that was severely injured in Iraq and returned to the United States for medical treatment. There have been a few major complications and prayers would be most appreciated... thank you.

~j~j~j~j~j~

Love you all,
Ren

PS... Sorry about the HUGE photo... I am a dork and tried to change the pic. but do not know how to resize it smaller... Krystal will fix it later... :-)

Thursday, July 27, 2006 9:43 AM CDT

Not much going on... still waiting for the referral to Cedar's or wherever they are sending Krystal for the Gastroparesis problems... this heat and humidity we are having is not fun at all. Sunday, as we turned down our street, the temp. gauge in the car said it was 109 outside... and the humidity was like 78r something like that. This morning (7:00AM), it is in the 70's and the humidity is 90BR>Krystal is basically having to stay in her room all day long as the air-conditioner is in there and it is not that easy to move around and must be by a window to hook up and vent out... bummer. So, she has become nocturnal and is awake all night when she can wander the house.

Will let you all know as soon as we hear back on the referral...

We are busily preparing for our guys homecoming from Iraq! Krystal sits throughout the night painting posters and even researched things to do in Orange County for the families of Marine's coming out here. She spent so much time compiling a list and then posted it for the parents on a Marine web site she frequents. Not long now... YAY! :-)

~j~j~j~j~j~

Ren... TMP

Thursday, July 27, 2006 9:43 AM CDT

Not much going on... still waiting for the referral to Cedar's or wherever they are sending Krystal for the Gastroparesis problems... this heat and humidity we are having is not fun at all. Sunday, as we turned down our street, the temp. gauge in the car said it was 109 outside... and the humidity was like 78% or something like that. This morning (7:00AM), it is in the 70's and the humidity is 90%.
Krystal is basically having to stay in her room all day long as the air-conditioner is in there and it is not that easy to move around and must be by a window to hook up and vent out... bummer. So, she has become nocturnal and is awake all night when she can wonder the house.

Will let you all know as soon as we hear back on the referral...

We are busily preparing for our guys homecoming from Iraq! Krystal sits throughout the night painting posters and even researched things to do in Orange County for the families of Marine's coming out here. She spent so much time compiling a list and then posted it for the parents on a Marine web site she frequents. Not long now... YAY! :-)

~j~j~j~j~j~

Ren... TMP

Tuesday, July 18, 2006 12:18 AM CDT

Hello all~

The quickest & easiest way to update you is a chronological listing of the past few days...

Saturday, July 15:
We started the day at 6:30AM today in the Evil Room (ER)... Krystal's PICC line insertion site started bleeding about 6AM.. Not badly, but none the less... it is not supposed to be doing this. They cleaned it up and changed the dressing. Very painful but she hung in there!

Late morning, we did a base run. It was soooooooooooo hot there! Of course, in the heat she started getting a headache (ran the air all the time we were in the car) so when we got home, Krystal headed to the comfort of her air conditioned room and slept on and off till it was time to get up and head to base again Sunday morning. The line was still slightly bleeding but we monitored it closely.

Sunday, July 16:
was okay... we went to base to do our "visiting"... still major heat and humidity. Then took care of some "homecoming" business and a project (yes a new one!) I have started, and then came home and Krystal rested and slept the rest of the day. She was hoping to make an airport run with me but was unable... I just had to run to John Wayne so it was a piece of cake... there and back in under an hour baby... oh so SWEET!

Monday, July 17:
First part of the day was spent going to Krystal's endo., then her gastro., and then the Evil Room (ER). Her arm was swelling, she was having trouble moving her arm at all and the ever so slight bleeding was continuing... the pain was so much so that it was triggering a migraine. Her temp was 98.6 (she is one of those 97.0 - 97.6 people which is common with Addison's). They were afraid an infection was starting so, they pulled the line!
So, as always... finding some positive in every situation... this was a very good day... because the PICC line that was causing her so much pain came out!!! YAY!!! We got home around 2:00pm and she rested a while and then began painting "Welcome Home" signs for our boys. Our count down has begun! We have talked with Darren and Chad on the phone quite a few times in the last 2 weeks. He called yesterday and when he talked with Krystal, he told her to hang in there and that he will be home soon and things would be better then. :-)
Gotta love our Darren. :-)

Tuesday, July 18:
Today is my dad's birthday... or was???? I really HATE when past tense is used about someone who has passed away. Regardless of the fact that he is no longer here... it is still the day he was born... so... Happy Birthday Daddy! We love you and miss you so much more than can be expressed in mere words... Oh, and the girls said, "Thank you Grandpa for the very cool thunder and lightening storm the other night." They had a blast and got some awesome pictures!! :-)

I spoke with the gastro.'s office about the referral for the gastric pacemaker. It is looking like Cedar Sinai Medical Center may be where we are headed. But first, Dr. Adamany wants to talk with the dr. there about Krystal as she is so "unique" ( or "U-NA'-Q" as we say). He does not want to waste time with another doctor who is basically going to say, "Learn to live with it" like the last one did. Hopefully we will have news/information by Krystal's appointment this Friday.

Please keep our Marines of 3/5 and their families in your prayers... they will be home soon; but are not yet. And until they are home on American soil... please pray for their safety in Iraq and a safe return trip home.

Also... one last, but very important side note here...

I ask that you take a moment... and, as you read the last paragraph below, you ponder this thought...

As a parent, there is nothing in this world I would not do to help my children!
I know in my heart that parents reading this will understand what I am talking about. You will do anything to help your child if or when the need arises. The reason they are suffering could be as serious as a health issue or as simple as a heartache; but it does not matter... this is your child, and you will protect them to the best of your ability.

As many of you know, both of my girls live with health issues; Candice with a pituitary tumor and Krystal... well, Krystal with many different issues. It is not the path we started out on when they were children, nor the path we would have chosen; but it is now the one that they... rather we, must walk. On this path we have seen many curves, tripped in many dips, stumbled over quite a few bumps and climbed many hills. We can not see around the next corner and we do not know which direction this path it will take us. Yet, we get up, brush ourselves off, and continue on... with gratitude in our hearts.

We are so grateful and thankful because we know that my girls do not walk this path alone and never will; they have the love and devotion of family and friends. And as a parent it is most reassuring and more comforting than mere words can express, knowing in my heart that my girls have the unending support of our family and friends.

I proceed forward every day, knowing that at any given time, there is someone within an arms reach that will always extend a hand to my girls to help them if needed; but to support them always... because that is what family and friends are all about... being there to support one another whenever it is needed... at a moments notice... and in whatever way necessary...

So, with that in mind...

Most of you have read about the "Pendleton 8" in the news lately. I will not go into detail here but would like to let everyone know that we are supporting these Marine's... our Marines, and their families, 110 percent!!
Two of these Marines are "my boys" and I talk of them often. They and their parents are our friends... our family... and they need our support!!! All 8 of these Marine's and their families need our support.
The defense for these HEROES will be rather costly and is expected to exceed $500,000.00 for all 8 men; so we, as family and friends, have decided it is time to extend that hand! We are helping through the distribution of "support" wrist bands. They are very cool; you should check them out!!

Anyone interested in information about the wrist bands and/or supporting our Pendleton 8 in any way, please email me at this address...

tmpmarinemom@cox.net

These parents are trying to help their children... Please help us to help them do so!
These Marines and their families are within our arms reach...
Please... extend your hand...

~j~j~j~j~j~

Ren

Monday, July 10, 2006 2:05 PM CDT

Hi guys,

Okay here we go... events of the past week or so...

Saturday, July 1st:
After much discussion between myself and Krystal's dr. we agreed that she was not progressing at all. So, the decision was made to bring her home; with stipulations. She had to keep IV fluids running until the vomiting stopped and she was feeling better... and she needed to get in to see Dr. Adamany on Wednesday; agreed!
You are always more comfortable and much more relaxed at home and in your own bed and we were hoping that this might be the case for Krystal. If not, then I would bring her back in. We had a some very special friends here for the weekend and Krystal REALLY wanted to be home while they were here.
The nurse came out, got the IV going and placed it in a bag that Krystal could carry around. Man is it heavy! Krystal commented that they need to put them in backpacks to make it easy to walk around with.

Monday, July 3rd:
Deanna & Jerry had gone to base to see their boys... and they returned bearing gifts! OMG!!! They brought Krystal a camo. backpack to put her IV tote bag in and it REALLY made a huge difference! Thank you so much you guys! They then gave me a "Marine Mom" mug and t shirt... but wait, there is more... they "presented" me with a "Blue Star Flag." I have not cried so much in I don't know how long... this flag is reserved for parents of military only. I was touched beyond words but told them I could not accept it as this just would not be right; and I would never want to offend the mother or father of a Marine by hanging this on my door... but they insisted and Deanna picked a place to display it on our front door.

Wednesday, July 5th:
She went to the dr. Wednesday and he decided to keep the fluid running as she was still vomiting and not feeling well. Albeit not as much vomiting as she had been, but nonetheless, she still was vomiting. Her BP was up (for Krystal) as was her pulse... resting rate of 110.

Friday, July 7th:
No vomiting since Wednesday night, so he stopped the fluids but left the PICC line in; just in case the fluids need to be started back up. Still not feeling great. Dr. Adamany consulted with Dr. Marks and the 2 of them are checking out hospitals in So. Cal. to send Krystal to for a "consult" for the gastric pacemaker... so we shall see what come of this.

Saturday July 8th/Sunday, July 9th:
Over the weekend we flushed the lines (2 lines). Saturday there were no problems. She even wanted to go to the "Mooning of the Amtrak", so we did. Stayed less than an hour, but hey, she got out and got some fresh air for a while... and she had fun... as did Candice, John and Chris!
Sunday one of the lines would not flush. The tape/patch holding the line in was peeling up also, letting air in thus becoming "non sterile," so the home care nurse came out and changed the dressing over the PICC line. Krystal said that it was MOST painful when he did that. :-(

Monday, July 10th:
Krystal's arm is still hurting by the insertion site so I have a call in to Dr. Adamany to see what he wants to do... it was hurting her pretty badly last night; we had to dose her with enough pain meds so she could sleep... man we hate having to do that.

A few people have asked what caused this hospital stay so I shall recap here...
There were a number of factors involved... but basically... she was stressed by the Wal Mart situation to start with; not drastically stressed, but enough so to affect her Addison's to where she became a bit drained. And then that week the heat and humidity started and she was easily affected by it as she always is. She tried diligently for days to stay hydrated drinking water and Gatorade... but then on Friday the gastroparesis kicked in with the vomiting and whatnot. We could tell it was her gastroparesis and not just "regular" vomiting because she was throwing up foods she had eaten more than a day before. By Sunday night she new she was fighting a loosing battle so we went into the ER. They gave her fluids and sent her home, but the gastroparesis flare up continued... and by Tuesday she was not improving at all so Dr. Truong said she needed to go back in for IV fluids and steroids. That was when she was admitted... she was given massive doses of steroids for days for the Addison's, Zelnorm for the Gastroparesis, pain meds galore, a number of other meds., and saline IV's with potassium to replenish her electrolytes. In the Evil Room on Tuesday (June 27) an IV was started but by Wednesday night it was going bad... 3 of the hospital's finest could not start a new line so that was the reasoning behind the PICC line... it was/is the only way to get fluids and meds in her.

So, there you have it... that is the whole scenario in a nut shell... and brings us up to where we are at today... waiting to see what will be done about the PICC line as it is now causing problems. They say a PICC line can stay in for up to a full year... but considering the fact that the last PICC line Krystal had in only lasted a day before it infiltrated and she had a red streak running up her arm... she has done well with this one; almost 2 weeks!! YAY Krystal!!

I will let you all know as soon as we hear anything on the referral for the pacemaker consultation... what a tough decision to make about this... and not an easy one at that...

Love you all! Please keep Krystal in your thoughts and prayers...

TMP 2 & Super Mom...
Thank you for loving my daughters as your own... We are so very blessed to have you in our lives... my girls are so very fortunate to have two such caring mom's (and I to have such amazing friends) who, in the midst of your own turmoil's, still look out for our girls, always thinking of them and always making sure they are okay too. From the bottom of my heart... I thank you my friends!
Nancy... thank you for your amazing caring way also... Krystal says she feels such a special bond with you as well... you understand all too well some of the things she has been through and continues to go through.

To each and every one of you, but especially to the Marine mom's, dad's, and families... I am sending each and every one of you angel hugs to comfort you until your Marine is home... safe in your arms...
~j~j~j~j~j~

I love you all,
Ren

PS: A HUGE Happy 50th (July 8th) to my big bro Dave! Hope it was a great birthday!!! Love ya!!!
And T ~ NO you still can not have my big brother!!! :-)

Oh, and we have received phone calls from Jon (I was so saddened that I missed the call), Chad and Darren from Iraq! YAY!!! We really miss them!
But my boys are getting ready to come home; we are so excited!!! Well... 2 of them are... but it's a start... :-)

Monday, July 3, 2006 2:16 AM CDT

Krystal is home... I will do a detailed update tomorrow; too tired to do so tonight. She's not "all better" but we are working on it; just working on it at home rather than the hospital.
The hospital set up home nursing for her because she still needs IV fluids.
Anyway, more later...

Love ya all!

Ren

Thursday, June 29, 2006 10:50 AM CDT

Krystal is in the hospital. She was admitted Tuesday night. The vomiting continued Monday and Tuesday. Dr. Truong and I had a few conversations on the phone throughout the day Tuesday and by 8pm when 35mg. Prednisone, 50 mg. Phenergan were not helping at all he said to take her back into the Evil Room because she needed more IV fluids and said to have the doc there call him. So we went there, and Dr. Kaplan (same dr. she saw there Sunday night) called Dr. Truong and they decided to admit her.

They have finally able to stop most of her vomiting with IV meds.so I decided to come home at 11pm last night because her night nurse Amy is AMAZING! The night before when I came home, she sat with Krystal for the longest time... just sitting there, comforting her.
I just spoke with Amy and she said Peeps "had a rough night." The IV went bad and has been causing a lot of pain for her, and the 2 best ICU nurses and the best ER nurse all tried and couldn't start a new one... my poor girl! They stopped the IV drip but kept the IV line in her hand so they could still try and push her nausea and pain meds. carefully through it. The were able to push dilauded and atavan very slowly so that helped a little. The nurse said she finally got a couple of hours of sleep and is sleeping now...
She has 4 drs. seeing her this time... the admitting internist (super nice guy), 2 of her gastros., and her neurologist.
Well, I better get going... I need to get back there.

Will update as I can.

Please keep Krystal in your prayers and also the families of 3/5.
Two more of our Marines were KIA this past week... my heart is so saddened for the families of these men.

Love you all,

~j~j~j~j~j~

Ren
2:30PM UPDATE: They had to put a P.I.I.C. line in Krystal a little while ago... :-( It runs up her arm and to her heart... hope this one lasts longer than the one she had when she had the C Diff.; it only lasted a day and a half before she had a bright red streak going up her arm...

PS:
Gayle T.... Happy belated birthday!!!
Nancy... Happy early birthday just in case I don't talk to you before Monday! I really think it's tattoo time Miss Girl! :-)
And happy early birthday to "Bob in the Box!"

Monday, June 26, 2006 12:10 AM CDT

Well, this past week started out so totally bizarre that I just have to share this with you all...
Krystal and I were shopping and ran into a woman at a store that knows Krystal (she literally almost ran into us). Well, this woman decided that it would be a cool thing to do, to try and upset Krystal and make her feel like total crap... OMG, I am so sorry to say... I have now seen the true epitome of white trash... the antics and "display" this grown woman (who is I believe OVER 30 years old!), put on in the store was so pathetic. The remarks other people in the store were making about her actions made me feel so badly for the poor guy who was with her; how utterly embarrassing it must have been for anyone who knew her...
Anyway, without going into detail, this "woman," knowing Krystal's health situation and knowing that emotional stress could wreak havoc with Krystal's Addison's, decided to do something that she thought would totally upset Krystal... Krystal got through that just fine... but I just had to share this story with you because I was just so blown away by how low some people will go just to cause hurt and pain in another human being for the simple pleasure of just causing pain. It is really a sad thing... and this lady ( I use the term loosely) is a mom... OMG!!! You would think that she would have a little compassion, having kids herself... but apparently this isn't so. Oh well...

Soooooo, now to the reason for the update... even though Krystal spent ALL DAY long closed up in her bedroom yesterday (last 2 days in fact), with the air blasting in an attempt to keep her room cool (75 degrees was the coolest we could get it in here with her portable air conditioning unit), the hot temperatures and humidity yesterday won this round.
We had dinner around 8pm and she commented then that she felt very dehydrated and had no thirst level what so ever. She had bottles of Gatorade and water lined up on the table in an effort to stay hydrated, but a short time later the uncontrollable vomiting and whatnot started and didn't ease up until she had nothing left to throw up... She tried laying back down in her room but was so weak by then that she couldn't even lay there comfortably and the headache was starting... at about 11:30PM she said she needed to go in...
So... Hi ho, hi ho... off to the Evil Room we did go.

The nurse had a paramedic training with her and I told them both straight up... no rookies learning on Krystal... We were of course assured that the paramedic was very good... yeah right. I told them both, "You get 2 tries to hit her veins... and if you don't hit her by the second attempt, then we get to hit you." He tried once and couldn't get it and I could see the pain in Krystal's face that he was causing, so I turned to the nurse and said, "Your turn; he's done!" After 2 attempts to hit a vein... she was struggling to get blood out and I told her that Krystal's blood hemolizes rapidly. After 5 minutes of poking and pulling on her skin, they were only able to get enough blood for 2 TINY "infant" sized tubes of blood. The nurse thought she had the IV in her vein and injected Zofran for her nausea and hooked up the IV... it only took about 2 minutes to realize that the IV was NOT in a vein. The back of Krystal's hand was already swelling from the liquids pouring into her and her hand was hurting badly. And of course, by this time Krystal's headache was starting to really intensify. Luckily, on attempt 3 they hit a vein and were able to get her IV going.

An hour later a different nurse was in because guess what... yep, the first blood they drew hemolized! So, they had to stick her again... this nurse commented on how small Krystal's veins are and she really took her time before poking her. She got the blood and even drew a bit extra in case the lab needed more so they wouldn't have to stick Krystal again. A little over an hour later, the dr. came in and said, yep, she's dehydrated alright... Sodium, Potassium. Calcium, Direct Bilirubin, AST, ALT, & MCHC were all low and her RDW was high. He , finished the fluids, gave her Dilaudid for her headache and pain and sent her home... We got home a little before 4AM. So we will spend today, trying to keep her cool, keep the fluids in her and attempt to get the swelling in her hand to go down.

The only thing Krystal was concerned about while laying in the Evil Room was that she/we would not be able to go meet our friend Nancy today. Nancy is out here from Kansas... Candice, Krystal and I were going to go hang out with her for a while today. But it's okay, because plans have changed anyway, and Nancy is leaving today to go home this afternoon; so we will hang out in August when she is back out here. Nancy is a wonder "Marine mom." Her son was just flown home from Iraq due to an injury; but he is going to be okay! Yay Matt!!! Nancy, you are an amazing person, an amazing mom and you did one hell of a great job raising those boys! I look forward to our BBQ when you come back out! Oh, and Candice and Krystal said to tell you that they think you need to let them take you to get a tattoo... :-) Krystal needs her Claddagh crown "fixed up" a bit and the hands added to it... she's been wanting to get it completed for almost 2 years and said she will go get a tattoo with you any day! :-) So tell your husband he better be on the lookout when you come home. LOL!

I will probably spend the day today packing and loading boxes in the car to take to base (care packages for our Marines). We have begun the homecoming preparations for our boys... and in no time at all, they will be back home!!! We can hardly wait!
However, we did hear saddening news last week of injuries that a couple of our Marines sustained... so please... continue to lift all our boys up in your prayers; they are not home yet... and please lift up their families as well!

Also, please say a special prayer for our friends... (Marines and their families) that are now dealing with a terrible situation... these are very good people; very good Marines!!! And their mom's and dad's are very close friends of ours as well.
L & D~ We love you guys and you know we are here for ya; whatever you need!!!!!

Well, as I have only had a couple hours sleep, I hope I everything I wrote makes sense. :-)
Okay, I need to call Krystal's endo now...

Hugs to you all....

~j~j~j~j~j~j~j~j~

Ren

Saturday, June 3, 2006 10:58 AM CDT

Hello all ~

Quick update...

Krystal went back to the endo. for lab results. Her Iron was very low so he has started her on high doses of iron. This might just explain the massive amount of hair that has been falling out. Hopefully, she will start feeling better soon.
The results for the hypoparathyroid test were not there and when they got a hold of the lab... they had not run the test... so, they will check it in 6 weeks when they recheck her iron levels and all other labs.

It has been really warm the last few days and is supposed to be very warm this weekend. The heat is getting to Krystal a bit; thank goodness for her portable air-conditioner!

Our guys are on the downhill side of their deployment... well over half way through; YAY! We are preparing for our final mailing within in the next week or so and then will begin planning for their homecoming.
Please keep all of our Marines in your thoughts and prayers...

~j~j~j~j~j~

Ren

Sunday, May 21, 2006 12:00 AM CDT

Yaaaaaarrrrrr.... it be a fine day in the Kingdom! LOL!

Candice, Krystal and I went to the Renaissance Pleasure Faire in Irwindale at the Santa Fe Dam Recreation Area yesterday.
It only took about an hour to get there, not too bad a drive at all. Krystal was totally amused (gotta understand her sense of humor) by a sign that was posted at the entrance of the area that said, "Santa Fe Dam Junior Life Guard Program." She commented, "What are they going to do; throw um off the dam???"

Candice checked before we left and the temp was only supposed to hit around 73. We arrived around noon and the day started with nice weather but of course it got hotter than was expected.
Luckily Krystal didn't wear her heavier, long sleeved "Ladies attire" but rather, chose to wear one of her corsets and a long light weight skirt instead.
She does love her corsets... :-)

When we first arrived at noon the weather wasn't too bad nor were the crowds; but by 3pm it was blazing and the heat was way too much so we headed out. And there were WAY too many people in there by that time too. It was in the high 80's/low 90's and a bit humid. The people working the faire were even commenting about the humidity. I don't know how those of you with Addison's live in the Midwest!!!
We had a fun day though... it was very cool seeing all of the people in their costumes and venturing back in time. Of course Krystal's favorite were the men in kilts and the pirates. And to Krystal's delight, we were fortunate and saw the infamous pirate Jack Sparrow as we were leaving.

Candice got a really cool goblet and Krystal... well, what can I say... of all the "time period" items she could have chosen to come home with... what did zone in on???? A little black and white rubber ducky with a pirate patch and devil horns that squeaks! OMG, it is hysterical. She named him "Richard, the Pirate Ducky." Where most women had flowers in the front of their corsets... Krystal had Richard. And by last night, she had the sun burn to prove it (a bit too much sun burn). The image of Richard's head and little horns are outlined by the sunburn on her chest...

The day wiped Krystal out and she slept most of the way home and went to bed as soon as we got home... and we expect that she will probably sleep the better part of the next 24 hours. We always "clear" our calendar for a day or two after an "adventure" as we know these will be "down" days... but it's all good, because she/we had a great time!!! :-)

Any way, as I was perusing this morning I noticed that Candice signed the guestbook here. Somehow, she has put some pictures on the guestbook page. So if you have time, take a minute to view her little montage. No need to click on the pictures, just watch and enjoy. :-)
There is one glitch in the program that Candice is going to try and fix; it should say, "All the Queen's Horses & all the Queen's men."

Nancy, as we were driving home Krystal noticed a very tall tower and on the side of it in huge letters it said, "EASTLAND" and she sooooo wanted to take a picture of it for you :-) but could not get the camera out in time.
Thinking of you... and Matt! :-)

Please keep our boys... our Marines in Iraq in your thoughts and prayers... and of course their families too!!!
Happy birthday yesterday to Magic! Ahhhh yes, what a way to spend your birthday... on the other side of the world, in over 100 degree temperatures with a bunch of smelly grunts! Ooh Rah baby!!!

Love,
Ren

Friday, May 5, 2006 0:13 AM CDT

Well, Krystal saw Dr. Truong (new endo.) this week. He came in and the first thing he said was that he had been sitting for the last 30 minutes reviewing Krystal's records. After talking with Krystal for a while he said that they are missing something so he ordered more labs. We got a few results back today and her CO2, hemoglobin and hematocrit levels are low. Some of the tests are basic tests and others are send out so it will take some time to get all of the results back. Krystal goes back to see him at the end of the month for all of the results.

She is not feeling well this week. She had some dental work done; basic fillings. But for the last 2 days she has been in major pain. This morning John took her to the dentist for me. They called me at work and said she needed a root canal ASAP and got her in to have it done within an hour. It was pretty painful for her and she just laid there with tears running down her face; but it is done now and hopefully she will start feeling better soon! She laid down as soon as we got home and has been sleeping since.

Even with all of her pain going on she started talking with the dental assistant about her brothers that are Marines and told her that a couple are in Iraq right now. She asked if they could tell her who she could contact about buying the little tubes of tooth paste they use. They gave her 2 boxes (48 tubes total) and told her to check with them in a few weeks and they would give her more! Got to love my girl; even when she's feeling like total crap, she's thinking of our boys!!!

I just heard tonight that Joyce, a very dear friend of Neen's was killed in a car accident. I am shocked beyond belief. Please keep her husband and her family in your prayers... and keep Neen in your prayers too. This is so very sad for all of us but especially for Neen... and she just got out of the hospital herself last week! Love you my see-stor!

~j~j~j~j~j~

Ren

Friday, April 21, 2006 9:05 PM CDT

Krystal started the Spring break in the hospital for 3 days and almost ended it that way too... she spent Easter night in the Evil Room. This time was mostly "gastro." related which of course set off her Addison's. All day Saturday and Sunday her BP was jumping up and down from 145/97 with a pulse of 135 and then down to 116/78 with a pulse of 95. She was not feeling well at all so we took her in. They did the standard BP checks of lying down, sitting up and then standing up. They had to help hold her up so she could stand while they checked it. Her P.O.T.S. was obviously acting up; which is a total bummer because she has not had any problems with it in some time.

Her nurse Rebecca was awesome. She was so sweet!!! When she went to start Krystal's IV she said, "Well, maybe we will get an Easter miracle and hit your vein quickly." Not only did she hit the vein on the first try... she got blood for the labs easily and Krystal said it was painless!!! She said she didn't even realize that she had been poked or that the IV was in until they took the band off her arm. Krystal said that this was the first time in the past 5 years (literally) that she felt nothing at all when a nurse tried to start an IV!!! I guess we got our Easter miracle after all! Thank you God! :-)
The dr. gave her 1 bag fluids, pain meds. and debated admitting her but decided to let her come home.
We were home by midnight thirty or so...

Hope you all had a wonderful Easter!

Love,
Ren

Oh... Happy Anniversary Chuck! 27 years baby!! YAY US! :-)

Wednesday, April 12, 2006 11:38 AM CDT

Hi all~

Okay, sorry, but this is going to be long....

I took Krystal into the Evil Room about 5AM last Saturday morning. Migraine was very bad and she was feeling weak; so much so that by the time we arrived she got out of the car and walked maybe 10 feet and asked me to get her a wheelchair because she couldn't make it.
They were not too busy and the registration person from the week before remembered her so she got her in right away. They did the standard blood and urine tests and started the IV. The nurse was one she had months ago but remembered Krystal and remembered that she had to go in at an angle to hit the vein and got hit the vein on the first try! YAY!!! WAY HAPPY DANCE!!!!!
They ran basic fluids, Zofran for nausea and Dilaudid for the migraine. At 10AM the nurse ran in and gave her a Bactrim saying the urine showed an infection. I heavily questioned what antibiotic they were giving her because of all of her medication allergies and the concern of C Diff. reoccurring. By 11AM the headache was no better so they decided to admit her but they had to wait for a bed. The dr. and I discussed the antibiotic and he said he would have preferred to use a different one but because of her allergies and history of C Diff. he would not.
The Evil Room was so quiet when we had arrived but became extremely busy that day. I think they had 8 or 9 "trauma's" come in.
At one point Krystal needed to go to the bathroom so badly and they were "out" of wheel chairs and I went to a receptionist asking for a bed pan and she came back in saying they were "out" of bed pans! OMG, how in the hell does a hospital ER run out of bed pans??!! GEEZ!!
The admitting dr. came in to talk with Krystal and pissed me off and made Krystal cry when he made remarks about her needing so much Dilaudid for her migraines, questioned as to why Krystal's own doctor had upped her prednisone the day before and then said he didn't think she had an infection after all. Marge... oh girl... you would have been so proud of me... I remained calm (as always) and was "diplomatic" (well other than the blood red color that my face probably was) just like we were talking about on the phone the other night! LOL! After that little conversation the admitting dr. decided to call in an endocrinologist also. Hmmmmm... ya think???!!! The BONE HEAD!!!
They finally got Krystal in a room at 3PM. Dr. Bonehead, after all his remarks, ordered Zofran and 2 mg. Dilaudid every 4 hours.
They had given her 150mg. solucortef in the ER, another 100mg. when she got to the floor and the same again at about 11pm. When they came in to give her another 100mg. 8 hours later in the morning I questioned it. They said the order was for 100mg. 3 X a day.
When the endo. (Dr. Barrera) came in Sunday morning we had a very lengthy discussion about the admitting dr., his remarks to Krystal, the med. orders, etc...
Dr. Barrera lowered her solucortef to 50mg. 3X a day :-) and said he wanted to keep her another day. Not 5 minutes after he walked out Dr. Bonehead walked in and the first words out of his mouth were, "Well, are you ready to go home?" I explained that Dr. Barrera had just been in and wanted her to stay another day.

Oh... it turns out Dr. Barrera is in the group with the new endo. I had just made arrangements for Krystal to see (Dr. Trong; thanks Carol P!!). In fact, the week before when I called to try and get her in they told me Dr. Trong was not taking on new patients and I "explained Krystal" to them and asked if they would ask the dr. if he would take her on as a patient and they called me back saying he would but couldn't see her until May.

Sunday afternoon Greg. (Josh's wife) came to visit Krystal just as they were getting ready to start a new IV. The original IV lasted almost 24 hours!! Woohoo!!! The nurse actually listened to me (after I persistently stated 5 times how hot packing her arm might help) and hot packed her arm before trying to hit the vein! Wanda, are you as impressed as I am that they listened? LOL!
G~ thanks for coming!! The flowers are so beautiful!!! Girl, your belly is looking like that baby is ready to be here. You look amazing! Hope you like all the baby clothes!! :-)
Smiley, John and Chris got Krystal a Jack Skellington clock and we put it, her flowers and her "Jack" pillow all together on the shelf to watch over her. :-) Hey Jon... I made a funny... I put her CLOCK up to WATCH over her... slap my hand. :-) LOL
Eggbert laid with Krystal and "Evil Looking Kitty" as I call it, stood guard at the head of her bed as it always does.
But Krystal was missing her favorite ICP blanket this visit (the one Jeff gave her) cuz it was being washed. She is wrapped in that thing 24/7 when she's not feeling well and when she is feeling well, she is still wrapped in it when she sleeps or watches TV. Every time I say Krystal needs to "go in" the first words out of Candice and Easton's mouths are, "Does she have Eggbert and her blanket?" It is known as the PP blanket, cuz I'm a DORK and one time I accidentally called it her PP blanket instead of her ICP blanket... so of course, knowing how we are in our household, the name stuck! :-) Anyway. it is the warmest blanket... it is so comforting to her, that it is now standard "hospital necessity" along with Eggbert and Evil Looking Kitty whenever she has to go in.

Monday the day nurse walked in and remembered Krystal from last year. She was/is an awesome nurse!!! When the endo. decided to release Krystal the nurse said she was glad but bummed because she always learns something new when Krystal is there. :-)

So, Monday afternoon we came home and she has been sleeping pretty much since then; waking to eat but then going right back to sleep This is normal for her. She will probably sleep like this for a couple of days before starting to rebound. The dr. tapered her prednisone to 60mg. a day for 3 days, then 40mg. for 3 days, etc... trying to avoid too much body ache/pain from the quick steroid withdrawal.

Yesterday was Chuck's birthday!!! YAY!! Happy birthday babe!! Dad and the boys celebrated with a birthday shot; just one, nothing excessive. John had a Jagermeister bomb with Rock Star, Chuck actually had a shot of Jagermeister (he doesn't do hard liquor!) and Easton and Chris had an Irish Car bomb contest. Hey Darren, can you guess who was faster??? :-) Not to worry, we got it recorded for ya... I'll be sending it soon. Oh, and Redneck Hobbit... there was discussion about you and your beverage of choice! LOL!
Darren, Chad and Jeff... Pop said to tell you that he had a beer for each of ya till you can come home and have one with him...
Or just a plain coke if you prefer... or a Capt. & coke. ;-)

Okay, I warned ya'll this was going to be long....

I hope all is well with each of you and your families and wish you a wonderful, joyous Easter this Sunday!!!

As always, please keep my boys in your thoughts and prayers as they continue to focus on their task at hand half way around the world...

~j~j~j~j~j~

Ren

Wednesday, April 5, 2006 0:19 AM CDT

“Life is your right. Don’t give up the fight.”
This is a message from my friend Shannon's son Nick who passed away Sunday from complications of an intestinal infection. We are all so very saddened by Nick's passing. I met Shannon over 4 years ago because our children had something in common; Addison's Disease. Nick was 16 years old. I feel truly blessed to have known Nick and to have Shannon as my friend. She and their entire family are truly amazing people.

Please visit Nick's caringbridge page and keep Shannon, Shelby and their entire family in your prayers!

http://www.caringbridge.org/ca/nicksnow/index.htm

Krystal is having a very rough time right now. She is on a huge roller coaster of feeling well to barely being able to get out of bed. Please keep her in your thoughts and prayers as well.

Thank you!

~j~j~j~j~j~

Love,
Ren

PS: Happy Birthday "Mr. Satan" AKA Darren!!!! Love ya son! We all miss you very much and can't wait till you guys come home!

Friday, March 31, 2006 7:13 PM CST

Went into the Evil Room about 4:30AM this morning. Krystal had been vomiting, had a migraine and was very weak. They had to bring a wheelchair out to the car for her; she couldn't walk in. Luckily they were not real busy at that moment so she got into a room right away. We waited over an hour for the dr. to come in but at least she was in a bed and not in a waiting room chair or on the floor which is where she usually ends up laying.
Finally about 6:30AM the nurse TRIED starting her IV. She fished for the vein on the inside of her arm on the first try, and as usual couldn't hit it. ARG! She got a vein "kinda" and tried to get blood. Key word here is "kinda"!!! She hooked up the tube for the blood draw, couldn't get any blood, and had to pull the needle and try another spot. She pulled the needle with the tube still attached so she lost the vacuum on the tube. So on the 2nd attempt (I told her she only got 2 tires!) on the back of her hand she hit a vein but tried using the same tube with no vacuum left in it and no surprise... the blood wouldn't go into the tube! DUH! So, she pulled the tube off and blood "spurted" out... ran down Krystal's hand and onto the floor.
And anyone who knows Krystal and her whacked humor will understand this... she wanted a picture of the "blood puddle and splatter" on the floor to send to the guys before the nurse cleaned it up. It was very funny!
Hmmmm....
Gas in the TLC to get to the Evil Room... $3.00
Parking in the hospital parking lot............. $4.00
The look on the nurse's face when K. wanted a picture of her bloody hand and floor..... PRICELESS!!!!!

As I said, you have to know Krystal to understand her humor... and Darren, Jon, Easton, John and the other guys all now and love her humor and will most certainly appreciate it! LOL!
So... after 10 hours sitting/laying in a darkened room, 2 bags of fluids, Zofran twice and a total of 5... yes 5mg. Dilaudid, they decided to send her home at 2:30PM. Her pain level was down from an "8" (on their scale of 1 to 10) to about a "6." They debated admitting her but decided to send her home and see how it goes. I was glad to bring her home because I kept asking him about her meds for her Addison's (her steroids) which she had not had any of, not even her normal daily doses and he was not worried at all about that. He only focused on the migraine. So, I was happy to bring her home to get her steroids in her! And if her headache get any worse... we will take her back in but I will bring her meds with us this time!

So Krystal is home, drugged up and resting. So please keep good thoughts going!
~j~j~j~j~j~
Love ya'll,
Ren

OH!... 2 things...
1. Don't forget it's day light saving time this weekend!
2. Jonathan, John and Chris are HOME!!! Back from Iraq baby!!! YAY!!!!!!!!!!!!!!!!!!!!

Saturday, March 18, 2006 11:16 PM CST

Well, the week started with some great and some not so great times... at about 1:00AM on Tuesday, March 14th the phone rang. I said hello and heard, "Hi Mama, I love you." It was my Darren calling from Iraq!!! OMG! It was so wonderful to hear his voice... It took everything I had not to cry. He said they are doing okay. It is starting to warm up, but not too hot yet. It was so awesome to talk with him! He let me know that ALL of "my boys" are okay!
YAY!!! :-)

Leanne, Deanna & Gayle... my dear friends! I can only imagine how your hearts feel when you get those phone calls. But after recently receiving phone calls from Jon and Darren and the overwhelming joy I felt... OMG, I think I get it just a little... my hats off to you wonderful, wonderful ladies... you are what most "Marine mom's" strive to be!!! I admire each and every one of you!!

Later that morning was the not so great. Krystal called me at work saying she needed take the dreaded trip to the Evil Room. She walked in on her own, just holding on to my arm. But after sitting there for an hour (and not even being triaged) she began crashing quickly. She had to lay down. I went up to the counter and told them she was crashing and could no longer sit up. The nurse walked over to check on her. She asked Krystal if she could sit up and Krystal just laid there crying and told her no. They got a wheel chair and I had to literally lift her up to a sitting position and then the nurse and I had to physically lift her to get her into the wheelchair. They put her in a room and then the fun of trying to start an IV began... 3 tries later and massive bruising, they got a vein. They tried to draw labs but came back 15 minutes later saying the blood had hemolized so they had to try again. They gave her the standard IV fluids, steroids, Zofran for nausea, and Dilaudid for pain/migraine.
And 5 hours later they sent her home...

Candice came down Tuesday and stayed with Krystal Wednesday while I went to work. Thank you Smiley for your loving heart and caring ways!!! You are always there at a moments notice if any of our family needs you; thank you babe! You are an amazing person and so deserve the very best this world has to offer! I know that one day you will find that special someone that appreciates you, loves you and treats you the way you deserve to be treated.
Daddy and I love you so very much and wish you every bit of happiness in life!

Friday Krystal was feeling a bit better so she went to work with me for a few hours. Easton and another Marine, Brandon, came to my school to visit students and to be in a photo with some of our students who did a sock drive for the Marines. Easton took Krystal home for me. She was pretty wiped out after that and slept most of the rest of the day.

Today she did some running around with Candice and I. We bought materials to make "cooling" neck tie/wraps for the Marines. We are putting that polymer cooling crystals in them. The sewing classes and a couple of ladies at school are actually making them; because as everyone knows... I DO NOT sew! LOL! She is doing pretty good tonight... we are going to go lay down and watch a movie now. :-)

Please keep our boys in your prayers... and say a prayer for their families too please! :-)
Raquel, Kris and Lisa... ladies, you are amazing with all you do for not only your own husbands and families... but for everything you do for all of the other Marines and their families! Thank you for all the help you have been and continue to be!

R~ Hey girl! You are my oldest friend; well you're still not as old as "T" is, but you are BOTH older than I am!!! HA! LOL! Wow, 7th grade was a very long time ago, wasn't it??!! :-) I hope your birthday was everything you wanted it to be!!! See, I didn't forget! I NEVER forget your or "T's" birthday's now do I??!! :-) I love you!!!!

OH!!! John and Chris will be home in less than 2 weeks from Iraq!!! YAY! Say a special prayer for them too!!!

~j~j~j~j~j~

Love you all,

Ren

Sunday, March 12, 2006 1:02 PM CST

Hello all ~

This past week was a busy one. Krystal had an endo. apt. to go over labs. He is a bit concerned that her CO2 (low) and Chloride (high) levels continue to be out of range. Normally the potassium and sodium should be out of range also however, this is not the case. So on her next lab check he is checking her parathyroid levels to check for hypoparathyroidism. They will not run labs on her again for 2 months unless she ends up in the hospital; in which case, they always run labs and we will have this checked at that time. She has labs drawn every two to three months to check "everything" so they are not going to make her get stuck again before then if it's not an emergency because she is such a hard draw.
Hypoparathyroidism is very rare but then again so are most of the medical problems she has. :-) I guess the muscle twitching she has is a possible symptom. Here is what I found...
"Hypoparathyroidism is the state of decreased secretion or activity of parathyroid hormone (PTH). This leads to decreased blood levels of calcium (hypocalcemia) and increased levels of blood phosphorus (hyperphosphatemia). Symptoms can range from quite mild (tingling in the hands, fingers, and around the mouth) to more severe forms of muscle cramps leading all the way to tetany (severe muscle cramping of the entire body), and convulsions (this is very rare!)."
Most likely she does not have this (we always remain positive!!!) and if it turns out that she does....
then it's just another medical issue to become knowledgeable about; right?! :-)

Krystal has had a migraine for most of the week so she slept quite a bit. When she was up, she kept very busy working on sorting and boxing goodies to send to our boys in Iraq. We have another 20 boxes and envelopes we are sending Monday.
We received a phone call from Jon yesterday morning.... YAY!!!! It was so good to hear his voice and to actually talk with him. I was able to talk with Darren online for a while the other day also... that was awesome too. We have received emails from Chad and he is well. Casper emailed me last week and he is doing well also. Other John and Chris will be home soon; just in time for Chris's 21st birthday!!! YAY! The birthday celebration plans are already under way! We have missed them.

Keep our boys in your prayers!
~j~j~j~j~j~

Love you all,
Ren... TMP

Sunday, February 26, 2006 12:48 AM CST

Well, it's been a few weeks since I updated the page so thought I should... for the most part, Krystal has been feeling pretty well all things considered.

You know, I probably should change this picture but it is such a wonderful picture of Krystal... from a time when she was happier than I had ever seen her... I just don't want to!

Okay, I have to share this story with you all... Friday night at about 11:30pm the door bell rang. The dogs started barking horrendously. Krystal was laying on the living room couch and it of course startled her immensely. She jumped up in a panic. The porch light had burned out earlier that day so it was dark on the porch. She ran and grabbed a flash light before opening the door. She kept "The Bow Bow" AKA Arwen right by her side as she opened the door; there was no one there. She ran out front, only to see kids running down the street and around the corner; and she proceeded after them. We could hear her calling to them saying she wasn't mad but wanted to explain something to them. Candice and I called for her to come back but no reply. We could not see or hear her so Candice grabbed the car keys and as we were headed out to find her she came back in. She was so upset. She said she just wanted to explain to them that her brothers and friends are in Iraq and that when they rang the door bell she immediately thought one of them had been killed. Candice tried to explain that no one would come to the house at 11:30pm for that and Krystal said she knew that logically but when the bell rang that was the thought that ran through her head. She laid back down on the couch and tried to relax but within 5 minutes she began vomiting.
Once again... it is amazing what emotional stress does and how it affects an Addisonians body. :-( Chuck fixed the porch light Saturday and hooked up the sensor lights coming up the walk way!!!

We got Krystal's latest labs back and she has a couple of things out of range...
Her MPV & Chloride are high and CO2 is low. The latter two suggest dehydration and acidosis which, of course, she has been through before. For the most part, this is all gastro. related. Kind of weird (well, for her anyway) that her Chloride is high and her potassium & sodium are in range. Having to deal with this Gastroparesis and hypoglycemia along with the Addison's really does not make for fun days most days. ARG! She goes back into the endo. this Friday.

I am calling her neurologist Monday to get her in to see him. She gets muscle twitching around her mouth and eye lids which in itself would probably be no biggie, but it is occurring quite frequently now and a couple of weeks ago when she and Candice were at the Stampede she had to take meds. because she was not feeling well. Candice called me saying that Krystal had taken meds. and now her upper lip was basically paralyzed... when Krystal smiled her upper lip would not move. It slowly improved throughout the night. If it had not improved, we would have taken her in that night. That has not happened again but as the twitching is becoming more frequent and becoming bothersome to her, I think she probably should get this all checked out.

We remain busy with "Marine stuff." We mailed out 230 letters for my school yesterday and will be mailing about a dozen larger envelopes today. Monday, we will send about 20 boxes from our family...
Krystal will be putting pictures on our Marine/Family page in a few days (she is not feeling to well today) so look towards the middle to end of the week for them! My arm & shoulder are healing slower than I had hoped... but I will be back to 100 percent soon! :-)

Please continue with prayers for our Marines of 3/5 and all military personnel in Iraq!!
Say a special prayer for my/our boys please... and now NO ONE get offended by these names because these are nicknames THEY have given themselves/each other!!!... Jon (The Jew; he PROUDLY calls himself this!!), Darren (Mr. Satan), Chad (the Redneck Hobbit), Jeff, Bob in the Sandbox formerly known as Bob in the Box!, Ben, Magic, Fed., Country, John (the Arian F; and NO he is not really an Arian! It's a JOKE!), Chris (Half Breed), Wasted, Josh, Jonathan and David.
Easton is recovering well from his knee surgery & I know he wishes he was with his boys!!!
Also, please keep Casper in your prayers... we have not talked with him in many months but he is back in the sandbox too and I wish him well and for all of the guys to BE SAFE!!!

T ~ my OLD friend... HAPPY BIRTHDAY GIRL!:-) Wow, do you realize that we have been friends for TWO THIRDS of your life!!!???!!! LOL! Hope your birthday was the best ever! It was sooooo good to talk with you on the phone the other night! I love you Terry!!!!

Love you all!

~j~j~j~j~j~

Ren

Friday, February 10, 2006 8:09 PM CST

Sorry it's been a while since I updated the page. Things have been a bit crazy. We had Jane's memorial and now we are trying to get everything taken care of with Pyro's "estate." It has not been fun. Oh, and then I hurt my arm & shoulder and have been incapacitated for over 2 weeks. I hurt it stirring up 4 batches of Rice Krispy Bars to send to Iraq... NEVER stir that many at once! Stupid on my par???.... oh yes it was!

Krystal had "the cold" that's been going around but is doing much better. I swear Zinc is the BEST cold med. in the world!!! In fact, she and Candice are going to the Stampede tonight!
Candice took Krystal to Newport Harbor last Sunday. The tall ship Lady Washington was there for a few days. They paid to go out on a 3 hour "cruise" but it was foggy that day so the ship just tulled in the harbor. Krystal didn't care; she loved it!!! And why do you ask did she love it so much.... because this is one of the ships that was used in filming the movie, "Pirates of the Caribbean." Which is one of her favorite movies... right up there with Lord Of The Rings.
And anyone who knows Krystal, knows she LOVES anything & everything "pirate." She was able to help hoist the sales and tie off the line. That pretty much wiped her out and she just watched after that, but she loved being a part of the crew while she was could!
The temps have been in the 80's and 90's the past few days here so Krystal has been staying inside for the most part. The last time we had heat and winds like this (Halloween) she ended up in the hospital after being outside for a only a short time when she and Brandy were decorating the front yard.

We are getting busy putting together care packages for our boys in Iraq. Our first of many mailings will be tomorrow. If anyone wants to send care packages, please email me for further information.

Please keep all of our Marines and their families in your thoughts and prayers!

~j~j~j~j~j~

Love you all,
Ren

Saturday, January 21, 2006 3:17 AM CST

Jane passed away today... well, I guess it would be yesterday now as it is after midnight. She passed away Friday, January 20, 2006 at 11:00AM.

Thank you everyone for the prayers these past couple of weeks for Jane and our entire family...

~j~j~j~j~j~

Ren

Friday, January 20, 2006 6:03 AM CST

Krystal went into the neurologist this week. He changed her meds around a little as far as the time of day she takes them and all but no major med changes. Still trying to get her back into UCLA. She is kind of doing the roller coaster thing right now... having good days and bad days; but doing okay for the most part.

As some of you know, my sister in law Jane (Chuck's sister) was admitted to the hospital 2 weeks ago. She is in the end stages of liver and kidney failure; she has cirrhosis.
The drs. have tried everything they possibly could but they have not been able to help her.

Mark brought Jane home from the hospital Wednesday. Hospice came in and helped get everything in place and will be helping out. Her liver and kidney have shut down and the drs. said she "does not qualify" for dialysis and there is nothing else they can do for her. Her blood is too thin to even put a port in for it.
We were told she only has a very short time to live...

It was sooooo very difficult loosing Pyro...Carole (Chuck's mom) in Sept. and now we are going to loose Jane. It is very sad to watch someone who is only 42 years old dying from something that was so preventable...
:-(

Please keep our family in your prayers...

Thank you,

~j~j~j~j~j~

Ren

Monday, January 9, 2006 3:54 PM CST

Quick update...
A lot going on here on the home front... not all good, but some good so YAY for the good!!

1. Krystal went in for her post hospital stay appointments with the gastro. & endo. drs. last week and goes back to her neurologist this week. We are trying to get her back into her gastro. at UCLA as soon as possible also. She is unfortunately having to add more meds back into her daily regime. After the hospital stay in August she was down to like 7 pills a day but after the last 2 hospital stays in November and December she is now up to 14 pills a day. She has had to go back on the Zelnorm and also up a few of the other meds.

2. Krystal's Aunt Jane was admitted to the hospital last Wednesday; she is in ICU. She is in the final stages of liver and kidney failure. It is very sad... Please keep her and all of the family in your prayers.

3. "Our boys" deployed to Iraq again this weekend. Some left Saturday night and the rest left early this morning. If anyone is interested in supporting any of our marines during this deployment, please email me at my email listed below for details. We were able to spend some time with Bob in the Box and his mom and dad, Deanna and Terry, Saturday night. What truly awesome people they all are!! I was also fortunate in that I was able to meet Ben on Friday; another incredible marine. We spent some time with him last night/this morning before Kilo Co. deployed. His mom Gayle is a wonderful women also. Leanne and Marshall were able to come down to see their son Marshall Jr. off so we have been able to spend a little time together. Many of you have heard me talk of "Magic" before... Magic is Marsh Jr.

All three of these women have done such a wonderful job raising very decent, upstanding sons! Please keep all of our marines and their families in your prayers over the coming months.
Ladies, you have my utmost respect, admiration and gratitude! Thank you for raising such honorable young men who made the choice to represent and defend this incredible country of ours and what it stands for!
And thank you for allowing our family... and more specifically... thank you for allowing me to get to know your sons on a personal level. You know our home is always open to them!

Semper Fi!

~j~j~j~j~j~
Ren

1/12/06:
UPDATE ON JANE... Miracles do happen guys!!! OMG! Jane's kidneys have started functioning again. They moved her out of ICU yesterday and back into a "regular" room. Thank you all for the prayers!
~j~j~j~j~j~
Ren

Friday, December 23, 2005 0:33 AM CST

Krystal is home! YAY! They let her come home tonight. She is still not great, but good enough to NOT need to be in the hospital. Oh, and no C Diff.!! (If you have not read my last/previous journal entry from earlier this week, check it out... it will explain)
They gave her Reglan (for her Gastroparesis and vomiting) and she had a reaction. The first time they gave it to her she did not, but the second time, unfortunately she did.
As they were putting the Reglan in her IV I walked out of the room to go down the hall. When I returned a couple of minutes later they had the BP machine by her. She said her heart started pounding really hard as soon as they gave her the med. Her BP was okay 116/60, so we just monitored her. She got very tired and fell asleep. After a short while I noticed that her cheeks were so red she looked very sunburnt and I asked the nurse to check her BP again. It was 38/18. She thought the machine was wrong and rechecked it and it was 38/16. She looked at me, said "I'll be right back" and hurried out of the room. I started talking very calmly to Krystal and told her her BP was very low and was asking her how she was feeling. After a few minutes when they checked it again, her BP had gone back up to 90/60. They monitored very closely for some time after that. No rash, hives or anything else; just the red face and sudden BP drop. The nurse commented later how amazed they were that she was able to respond to me when I talked to her and also amazed that I remained totally calm and didn't freak out. I told her that I don't panic because it doesn't help Krystal. I do what I need to do to help her; be it get out of the way and let the nurses do their thing (as I did) or help if or when I can or am needed to help.
She was on 240mg. solu-medrol (or maybe it was solu-cortef; don't remember right now) so her white count is smacked pretty hard right now. They were very adamant when we left the hospital that she not be around people or out in public for a while as she is extremely susceptible right now to secondary infections.
So... we are home, and tonight we are going to just enjoy being in our own beds. Tomorrow, maybe we will put the Christmas decorations up... and maybe we won't. Candice and I ran and got a tree last night while Chuck sat in the hospital for a while with Krystal. Candice actually got it; I just went with her. :-) She insisted we have a tree here in case Krystal was able to be home. We decided we will decorate it on Christmas Eve... kind of like in the olden days; ya know. :-)

Candice... I know how much you like WA. but we are so glad you are home!! You have an amazing heart!! I know you have put your own needs and wants aside and are putting the needs of others first right now; and at times, it can not be an easy thing to do. But you always manage portray it like it is the simplest thing in the world. Daddy and I could not be more proud of you!!!! Thank you for your reliability and dependability. You are ALWAYS the first to step up if any one in the family needs anything or if any of your TBP's need anything!! :-)
You are the most amazing and caring sister; and I know that you will always be there for Krystal no matter what, and she for you. Grandpa K. and Pyro are smiling down from heaven bursting with pride.

To all of Krystal's friends who left her messages; thank you!
Catie, I know you can relate and thank you! You, Krystal, Bree, and Katie impress me with how you all deal with your Addison's and everything else that daily life brings your way. You are all four amazing women!
Kamisha... your letter was so heartfelt and touching. You and Krystal have been through so much through the years. You are a wonderful friend!

Jon... you are a good TBP and we all hope you have a very nice Chanukah with your family (Easton hopes so too... even if he doesn't say it! LOL!).
Easton... again, thank you for being here and for offering your help with K. (And yes Christmas is a good holiday!! LOL!)
Darren, Chad and Jeff... we hope you are enjoying your time with your families.
John, Chris and Jonathan... we hope your Christmas is quiet and NON-eventful!!!! I know it is difficult being so far from your families and friends.

We hope this holiday season finds you all in good health!
And please keep all of our troops over in Iraq in your prayers!!!

Merry Christmas & Happy Chanukah to all of our family and friends!

~j~j~j~j~j~

Love you all,
Ren

Monday, December 19, 2005 12:08 AM CST

Wow, I really like looking at this picture of Krystal and the guys! She looks so beautiful and was feeling SO good that day!!!

But once again, this past week has not been a good one... Krystal has been having major problems due to her Gastroparesis. I called the gastro. on Wednesday and they saw her that day. They gave her a new med to try but she didn't do well on it.
Friday night and again Saturday I thought we were headed to the evil room. She was vomiting so profusely and uncontrollably and became so weak that Candice had to physically help her from the bathroom to the bed. Not sure if it's from the med or a coincidence of timing because vomiting is not listed as a side effect from the med. but she has stopped taking it and I am calling the gastro. back this morning.

The gastro. dr. ordered a C Diff toxin screen because she was on antibiotics a few weeks ago and they want to be sure that she doesn't have that again... but she has not done that test yet. They don't think it's the C Diff. but just want to be sure...

I will keep you all posted.

~j~j~j~j~j~

Love you,
Ren

Mini Update... Wednesday, Dec. 21, 2005:
Krystal is back in the hospital... ended up in the evil room at Mission Hospital in Mission Viejo a couple of nights ago... and they admitted her. Low potassium, dehydrated, major vomiting, and gastro problems.

Will keep you all posted.

Jonnie... HAPPY BIRTHDAY today!!
Steven... HAPPY BIRTHDAY tomorrow!!

Love you all!

Ren

Friday, December 9, 2005 9:41 PM CST

Well, this week has turned out to be not such a good week... Krystal was unfortunately "subjected" to some unjust and undo stress and we all know what major stress does to a person with Addison's Disease... yep you guessed it. We spent the evening in the evil room AGAIN. She had such a horrendous migraine that they had to give her double the "normal" amount of dilauded in hopes of making it tolerable so she could go home and not need to be admitted AGAIN. Thankfully it worked and we were able to go home around 12:30AM. God I feel bad for her. The only thing she kept saying was, "Please put my IV somewhere so the bruise won't show... I'm going to the Marine Corp Ball next week."
Well, that has changed also... she is not going to be able to go to the ball after all. She is very saddened over this. Maybe next time...

Candice will be home Sunday... YAY!... which happens to be her birthday. Happy 25th sweetie!
Krystal's birthday is Monday... Happy 20th babe!
Love you both!!

Easton... thank you for going and bringing my girl home!
Darren... thank you for watching out for the lil sis!!!
Jeff... too bad you guys aren't going to be able to go to the ball. I know Krystal would have had a great time.
Jon and Chad... she still wants a hobbit! LOL!

~j~j~j~j~j~

Love you guys!

Ren

Monday, November 28, 2005 10:35 PM CST

I hope you all had a wonderful Thanksgiving!
Our home was not a quiet place by any means... and it was wonderful! We only ended up with a dozen people here, but it was very kicked back and relaxing. I told all of the guys that I truly wished they had been able to spend Thanksgiving with their families at home but since they were not able to, we were very glad that they were able to be here with us.
The generosity of people never ceases to amaze me... we had 2 turkeys given to us, an envelope was place in my mailbox at school titled, "I hope this helps feed some of our hungry heroes" with cash in it, and when I opened a letter from a very dear friend of mine there was a check enclosed and a note saying to help "feed our marines." Thank you everyone! It was so unexpected; each day I am amazed and impressed by the support I see for our troops!
The guys all had a good time... they shot pool, played video games and of course... played guitars! Frank... we need to get you down here again before they deploy!!!
After dinner the "kids" went to Dave and Buster's for the evening.
Thank you so very much Gail (my landlord & friend) for the new appliances in time for the holiday's.

As you can tell by the picture above, yesterday, we went to see "A Christmas Carol." Six of us went; the four in the picture above, Easton (who was being camera shy) and I. Chuck just wanted to stay home and chill. Candice... we really did miss you baby; but we will make sure we all go next year.
We had a really great time. Krystal was feeling so good and looking as beautiful as ever!! She has lost about 30 pounds and is of course feeling good about that also. She realizes it may last or may be short lived... but she actually has really good people around her who honestly DON'T CARE if she is "heavy" or not!!!
At the play, people would come up to the guys, say "Thank you," and then just walk away. One little girl asked the guys if they would take a picture with her. It was very heart warming!We went to lunch after the play and a waiter came over and told us that another table wanted to buy dessert for us and when we went to pay the bill for lunch, we were told that another table had picked that up also. The people wanted no thanks and had already left. It was just their way of saying thank you to the guys. As I said before, the generosity of people never ceases to amaze me. I think it is so wonderful how people are showing the guys their support.

Krystal is going to the Marine Corp. Ball in December with Jeff (pictured above) so we will have more pics. to post. She is really looking forward to it. Krystal, Jeff, John and Kristen went shooting at the range Saturday and had a blast! It was a very busy weekend indeed. She tires by afternoon/evening and this is nothing new, however, she is learning to pace herself throughout the day and if or when she's not feeling good... she stops and rests a while. The guys all look out for her so well and understand when she needs to slow down or just stop for a while.

Oh, and we hired an attorney today and started the appeal process for her SSI... please say a prayer and keep good thoughts going that it to all goes smoothly!!

~j~j~j~j~j~

Ren

Sunday, November 20, 2005 9:45 AM CST

Well, we had "Pryo's" memorial party a week ago on Saturday, Nov. 12th.
For the most part, all went well... :-) Krystal did well and was feeling pretty good until the last guest had departed... and then she crashed. She worked so hard on this party and was running on about 3 hours sleep. Way too much with her still recouping from the flu and pneumonia vaccine reactions. She slept from Sat. night at about 7:30pm until Tuesday afternoon... only getting up to eat and go to the bathroom.

Thank you to all of our friends and family who came!!!
Cousin Lindy & Joe, whom I had never met... what an amazing woman you are. :-) Thank you for driving so far to be with us.
Aunt Bobbie, people were amazed at just how much you and Carole look alike. Guess that comes with being sisters. :-)
Sharlee, Emily & Joe... I am so sorry you were not able to join us but I do understand. Thank you for the wonderfully touching thoughts you shared when you were here for Candice's graduation/going away party.
To Carole's "Parker family"... thank you for sharing your stories of work and friendship over the years with Carole. You are right... she's an amazing person!
To Jane and Mark's friends... thank you all for being here to help us celebrate Carole's life.
And to my family...
Ted, Carla, Jesse and Emily... You are awesome! I know how much you all loved Carole and how much she meant to you. And the fact that, even though Emily has been ill, you came all this way... that says a lot and really touched our hearts. Oh, and Carla... OMG, I do not know ANYONE else who could hold a conversation with Pyro as well as you could! LOL! You ROCK girl!!! I love you!
Neen & Frank... Thank you for all of the help and all the time you spent with me on the phone before the party. Neen, I totally apologize that this fell on your birthday... I hope you enjoyed the wonderful day Frank had planned for you!
David... Thank you for the card and phone call all the way from Montana. You're the best.
Sheila, John and Steven... I know Steven was exhausted from "playing" that morning and I so appreciate that you came. Steven... see what happens when you are so good that they put you on 2... not 1 but 2 varsity teams. :-) Never any resting time. Good thing the car is comfy to sleep in; huh? John, you are the epitome of a true gentleman... thank you for the flowers and thank you all for being here! Bobbit... you are my sanity... we have two choices in everyday life... laugh or cry... thank you for always keeping me smiling, laughing and finding the humor in everything. How ironic is it that between the two of us we have a complete set! LOL! You are the best little sister in the world!!!!
Josh and Crystal... Thank you for making sure Chuck and I ate... LOL! I am so glad you two were here. Now GET MARRIED ALREADY DAMN IT!!!!! Heeheehee...
My mom..... I love you mommy!!!!!!!! I am so thankful that you were here with me the night Pyro decided it was time for her to be with her mommy... and that you were able to be here for her party.
Easton... Thank you for everything! Thank you for being here with us when we received that very sad telephone call about Pyro. Your immediate caring and concern for the girls is just one of the many attributes that contribute to your admirable character; you are such a good brother. Thank you for all the running around you did to get ready for the party and for helping me with all the clean up afterwards. Oh, and thanks for sharing the Guinness with Chuck B. Heeheehee....

Brandy... Thank you for all the help in getting ready and then cleaning up after the party... oh, and thank you for taking care of K! :-)

James... To merely say thank you does not seem enough but I hope you know it is a very heartfelt thank you! We were overwhelmed with the incredible video production of Carole's life that you put together for our family. The countless hours spent on making this video are apparent. Your choice of music and photo compilation are true perfection. It is a truly amazing video and it touches our hearts immensely.
Dania... DO ~ You are an amazing human being, a true friend and wonderful sis. Carole was truly blessed that God brought you into her life. I know she was there with you during your struggles and you in turn were there with her during hers! You were each others strength when it was needed; and I thank you!!!! For so long, you & Sam have been the main source of stability in Sarah's life. You both have been, and continue to be, the place of solace for those in need... whether someone needs a place to vent, someone to just listen, or a shoulder to learn on; you and Sam are there. I know at times, this is not an easy task; but you continue on. Pyro and I shared many an hour talking about "her third daughter." She loved you very much and was so very proud of your accomplishments in life as a person, as a wife and as a mother. Your character, your morals, and your commitment to family and friends are admirable.
As Krystal said to you... Thank you for giving grandma another grandchild!!! She spoke of Brooke often and of how of much she loved her and would talk about all the little outfits she so wanted to make for her.
Thank you for being the wonderful daughter and amazing woman that Pyro saw, admired and so loved...

And last but by no mean least... Thank you Pyro... for blessing all of us with your wit and humor (as warped as it was), with your amazing smile, with your unconditional support and your unending love... I love you and I miss you so very much!

To all... May the wings of the angels envelop you, comfort you and keep you safe as you journey through life... ~j~j~j~j~j~

Ren

Sunday, November 6, 2005 11:41 AM CST

Krystal was in the hospital again... but only 2 days this time. YAY! We meet a very nice lady in the bed next to her and it turns out her daughter is friends with a girl Krystal knows. Small world...

She was/is dehydrated. First nurse couldn't find a vein, second one only tried to hit her once and couldn't get a vein... third one (insert arrogant bad word here) tried and dug deep till Krystal was in such pain and told him to stop (which she NEVER stops anyone because she says let them try so it gets over quicker)... fourth one looked and then they all looked on her arms, feet and neck and couldn't see any good veins. So, the dr. came in to start the IV on her neck, couldn't find a good vein on her feet or neck, ordered an ultrasound machine to help them and finally a nurse who always get hit her came on shift and was able to start one in her arm... blood spurted (it does every time she starts it) everywhere but she got it going!

Labs show low sodium, high RDW and acidosis so they admitted her. Got her in a room around 1AM...

They gave her a pneumonia and flu vaccine before she was discharged and she seems to be having a slight reaction to them so she is feeling like crap...

Candice is doing well in Washington and learning to adjust to "small town" living. LOL! But she loves it there.

Please keep Emily & Easton in your prayers...

Emily has an extremely bad case of Mono. which has affected her spleen. The dr. doesn't even want her out of bed. ~ Love you Em. ~

Easton has been pretty sick with I think the flu. He's not coming home till he's better because he doesn't want to get Krystal "more" sick; so he's staying out in AV.

~j~j~j~j~j~

Ren

Monday, November 7, 2005

Little update. Had to go back into the evil room yesterday. Krystal ended up with a really bad cold/respiratory thing going from the vaccines,her chest was feeling pretty tight and her upper back was hurting badly. The dr. was concerned about the back but checked and said her lungs are clear. YAY! He gave her an rx. antihistamine, pain pills and said that "normal" people can be sore for a few days and become slightly ill from these shots but that Krystal would probably take a few weeks to get over it the way her system is. But the positive is she got to come home! YAY! He was concerned he was going to need to readmit her and no one there wanted her to have to go through the IV attempts again. So, she is home and hanging in there.

We are having a "party" this weekend to celebrate Pyro's life... she wanted a party so we are having one damnit!
:-)

Thursday, October 6, 2005 9:08 AM CDT

Krystal is doing OK. Kind of have that roller coaster thing going right now with all the "emotional" events happening in her life. Sure would be a lot easier if emotional things didn't affect her as hard as they do....

Frank Sr. (Neen's father in law) passed way Tuesday night... please keep Neen, Frank and the rest of the family in your prayers.

Casper told Krystal his grandma is not doing well. Please keep his family in your prayers also.

Candice made it to Washington... YAY! Happy and sad emotions still.

~j~j~j~j~j~

Love,
Ren

Monday, October 3, 2005 7:30 PM CDT

"Pyro"... Grandma B. passed away last week... we are all shocked and obviously saddened. :-(

Candice left today to move to Washington... happy and sad emotions mixed.

I am too tired to write any more right now and will update when I can.

~j~j~j~j~j~

Love,
Ren

PS: Please keep Frank Sr. & Frank's family in your prayers.

Sunday, September 18, 2005 9:28 AM CDT

OK, first the medical update...

Krystal had a follow up apt. with her endo. last Friday. He is keeping her on the prednisone.
They started her on Creon 10 (brand for Pancrelipase) to hopefully help the gastro/stomach problems. Pancrelipase is a combination of three enzymes (proteins): lipase, protease, and amylase that is supposed to help the pancreas "do it's job" better.
She did really well for a few weeks with no almost no pain, but then a stomach pain started occurring on and off for a couple of weeks and the vomiting has started again. This past week hasn't been too bad as far as pain, now it's mostly the intermittent vomiting. So, I once again am pondering on which direction to go... we will give the Creon a try for a couple of weeks and see if it makes any difference.

Now, the rest of this is "personal" stuff...

Candice decided for sure... she is moving to Clarkston, Washington. She is moving Oct. 3rd. Understandably, I am happy and sad at the same time. She went up there a week ago and in 5 days found a cute little house to rent that is only 4 doors down from April (my niece) and Frank, worked out the business details with April to work at her salon doing massages and has a second job lined up as well. We are going to have a combination going away and graduation celebration at the house before she leaves. Email me if you would like details. :-) I am so extremely proud of her... but going to miss her so very much! I LOFF U SMILEY!!!

Darren (Nolan) and Jeff (Diegel) have been "playing" (guitars) in the garage almost nonstop for over a week; they are pretty good. I told them they need to meet Frank (Neen's Frank) and jam with him... they would have a blast. They set up their amps and whatnot and Chuck has been helping them with a bit of the electronics aspects of it all. They actually play very quietly, and they stop by 8:00PM. I talked with the neighbors and they said they can't even hear them play and not to worry; they are OK with them playing.

The other night, another Jeff came and sang with them for a while. Krystal set up a little system to help them record their music. The 3 boys were "playing" in the garage, Easton and Fed. were working on Fed's car in the driveway and this Escalade drives by, stops in the middle of the street, rolls down the windows and the kids were all excited and waving to the guys and the lady yells "Thank you, you guys!!" I LOVE when people acknowledge "my boys"; they SOOOO deserve it!!! It was very cool.

Friday was just one of those cracking up days... the attempt was made to do some serious playing... but, thanks to Candice, Bob P. (who decided that a cardboard box sitting in the garage was better served on his head than the floor!!!) and Krystal with the video camera, there was more hysterical laughter going on all night than anything else!! It was one of those, you had to be here kind of things. Two days later and we are all still laughing about it! Penny... dude, you are crazy! LOL! Oh Candice.... what did you start??!! LOL!!!!

The girls, Darren, Jeff, & Easton, made dinner Wednesday (14th) for my birthday... it was awesome! Thank you kids!!! Chuck cleaned up the patio so I could chill out back (thank you honey). It was a beautiful day. I received the most wonderful cards from "my sons" (Mr.S, D-Nutz, and Animal; thank you boys), Krystal made the COOLEST signs that she put up all over the house and I ended the day with a massage from Candice! It was a great birthday. I had spent the entire day at the district office and went from one meeting to the next and got home about 6:30PM, but it ended really nicely!! AND THEN... I walk into work the next day and the girls have decorated my desk in my classroom; it was sooooooooo cool!!!! There were streamers and signs all in yellow (like my support our troops magnets I have EVERYWHERE! and which happens to be my favorite color) and red, white and blue BABY!!! WOO HOO!!! It was soooo cool... and I got flowers and rock star and Arby's and lemon cake! It was great! The day was rather comical... EVERY student who walked into my room that day and saw the decorations lost sight for a moment of the fact that they were there because they got in trouble.

John, Chris and Jonathan left to go back to Iraq a little over a week ago... John called on my birthday; it was midnight there! As always, please keep them in your thoughts and prayers!!!

Please continue to keep "Pyro" (Grandma B.) in your prayers. This emphysema sucks!

Also, please keep Jason, (my friend Loree's son) in your prayers... he is having a very tough time right now with medical problems and the drs. are still in the process of trying to get a definitive dx. for him!
Thank you!!!

~j~j~j~j~j~

Love you all,

Ren

PS: Many of you have emailed and inquired about Casper, and I am sorry that I have not answered your emails... so I thought I should let you all know.... Casper broke up with Krystal in July, in the midst of all of the evil room and hospital visits. It is a VERY long story that I will not go into detail here as there is no "positive" point or purpose... but I just wanted to let you, her "family" know that this happened. It was very, very difficult for her; but thanks to her wonderful sis, bro.'s, and friends...she is doing OK... she... we... wish him the best in life and hope he finds what he is looking for...

Saturday, August 20, 2005 1:10 PM CDT

Well, Krystal went back to the endo. for her "post hospital stay" check up. She is doing SOOOOOOO well right now compared to a month ago! Keep the good thoughts coming!!!! He is keeping her on this new med regime for another three weeks and then going to see her again and see how she's feeling. He's pondering adding back the Florinef as she is really craving salt and she is primary Addison's but he's thinking of starting her back on a smaller dose. She has lost 10 pounds and is feeling so much better so he is really trying to avoid anything that will contribute to weight gain but if it's needed/necessary, he won't hesitate to add it back in! Her arms were so bruised up from this last hospital stay (looks like she's a battered woman!) that he is not ordering labs right now... says her arms need a rest so he will see how she is doing in 3 weeks and go from there.

And now my personal notes....
I think most of you know, but for those who don't... Dusty and Easton have become Krystal's surrogate big brothers. We have officially... unofficially... adopted them both!! :-)
Candice, Dusty and Easton... You have been Krystal's back bone with everything she has been through these past 3 months (physically and emotionally) and I thank you from the bottom of my heart! She is so lucky to have the three of you here to help her and watch out for her like you do!! I love you all so very much!
Candice... I love you and you know I will back you with what ever decision you make regarding moving; I know this is not an easy decision for you, by any means. I love you Smiley Girl!
Dusty... I will miss your daily smart ass remarks to the TSP's... "the sister persons"! You crack me up! Barrel-O-What??? LOL! And I know Peeps will miss your heart to heart conversations! Your support has helped her more than you know.... thank you!
Easton... You know I love ya... so I say this with your very best interest at heart ~ slow down! AND NO MORE STUNTING ON ORTEGA!!!! LOL! But seriously... thank you for being such a good big brother to Peeps!
Easton and Dusty... you are ALWAYS there every time K needs anything; whether it's a shoulder to cry on because of bone head friends... or moral support while the nurses are "trying" to find one last good vein they can stick her in... and I find this to one of many be a truly amazing qualities you both posses!
OK, private joke for my boys... Easton, Dusty, Fed, Nolan.... Hmmmmm... Question of the day... how many marines would it take to "obtain" and/or "liberate" an individual from a "hostile environment"... and then ensconce said subject in an undisclosed location? Hehehe... it's those "big words" that get ya; you know?! :-) Hospital's are NOT always our friend... Evil Room is a fitting title at times!!!!!

TMP

We had a celebration for Dusty Thursday night... which continued Friday night... :-)
He starts his "terminal leave" today; which means he will no longer be on active duty in the marines; he's getting out. YAY DUSTY!! :-) And, yes, I know... once a marine, always a marine! Ooh Rah...
Bud Man, Bacardi Man, Nolan, North East Dago (yes, that's his real nickname), Redneck, Jonathan, Jerry, Casper, Doc, Hooker, Smiley, Peeps, Misha... the "final 2 day count" would be.... 72...
and 3 bottles-O-Fruity! :-)
Dusty has been to Hawaii, Japan, Guam, Haiti, the Philippines, and Iraq...
At 22 years old... I think he's done more than his share for our country in the last 4 years; don't you??
He is going home to Wisconsin next week. We will miss him dearly!!!

Please keep Pyro (Grandma B) and Jane in your prayers... they are both dealing with very difficult health issues right now! We love you both very much!
Jane... Be strong and hang in there girl!! You know we are here for you if we can help in any way!
Pyro... What can I say... you are the best MIL a girl could ever hope for! I am truly blessed that God put you in my life! I love you dearly!!!!

~j~j~j~j~j~

Ren

Friday, August 5, 2005 2:20 PM CDT

Hi guys!

Krystal came home from the hospital yesterday. After basically a week off of all of her meds. the dr. is only putting her back on a few.
Here's the new game plan... at this point it is a short term plan to see how she does.

1. We are trying a change in her main steroid from Cortef to Prednisone (worth a try)
2. Taking her off her other steroid Florinef. She has had a lot of weight gain and fluid retention lately so they are removing this drug to see how she does off of it but will monitor this closely!
3. Adding Meclizine for the nausea/dizziness.

After 2 days of taking the Meclizine they checked her Orthostatic BP; laying, sitting and standing. With her P.O.T.S. her BP falls/lowers upon her sitting or standing.... Well, for the first time in 2 years her BP actually went up when she sat up and then again when she stood up! YAY!!!!!!! Happy dance, happy dance, happy dance!!!!!!

The adrenal stim test proved as he thought it would with no stimulation what so ever.
Her prolactin levels came back in range telling us that it was another med causing a false reading.
We are waiting on the results of MANY more blood tests that will take upwards of two weeks to get the results back.

She is down to 12 pills a day max. (was at 26!) divided into 3 separate dosings; 7:30AM, 2:30PM and evening/night time.

So, for now here is the new med. regime:

Prednisone (steroid for Addison's):
7.5mg a day; 5mg. in the AM & 2.5mg. in the PM
Synthroid for hypothyroid:
100mcg. once a day
Topomax for headaches:
25mg. twice a day (upping to 50mg. twice day)
Protonix for gastro.:
40mg. once a day
Meclizine for nausea:
25mg. four times a day
Seasonale BC pills:
To control periods & vomiting that coincides w/period.
Clonasapam for anxiety/stress/headaches/sleep:
.5mg. in the evening

Keep your fingers crossed and say a prayer that all goes well!

Kamisha,
Thank you for being here for her; you are a great friend!!

Easton & Brandy,
Thank you for being at the hospital! I know how difficult it was seeing her in such pain during their many failed attempts at finding a vein they could use... but you hung in there. What an awesome bro. & an amazing friend she has in you two!! (Oh, and Easton.... Fed. says he's ready if we need to go covert... LOL!)

Dusty,
Thank you for the heartfelt thoughts while you were in the field.... but hey... last time baby! Let the official count down begin...14 days to terminal leave and counting!!
YAY for you Bud Man!! We are looking forward to "Dress Blues D Day"!! :-)

You guys know we love ya and have the utmost gratitude and respect for you.
Thank you, from the bottom of our hearts, for choosing to serve our country as you have and for all you have done for our country! You know we are here if you ever need anything!
TMP

As always, please keep the families of all the fallen heroes killed in Iraq in your prayers! Every loss of life is a tragedy... this week is no exception; it has been yet another extremely tragic week. :-(
Our hearts are saddened and our thoughts & prayers go out to all the families...

~j~j~j~j~j~

Ren

Saturday, July 30, 2005 3:42 PM CDT

Hi guys!
Check out the new pony... :-) A couple more on the photo page.

Well, here's the latest....

Krystal went into the Evil Room Wednesday afternoon and was admitted that night; she came home last night. She has been dealing with an very stressful situation (much to her dismay) in the last few weeks that has affected her emotionally, and the heat levels in general have zapped her physically.

Sooooo, here's what transpired over the last few days in the evil room and hospital...

Wednesday:
Went into Evil Room about 2:20pm because Krystal could barely walk... They gave her IV fluids, Anzemet for vomiting and Ketorolac for headache/pain. These are two new drugs she has not had before. I wrote down Krystal's "illnesses", meds. and allergies and gave it to them.
7 hours later when they couldn't decide if they should admit her or not, I asked the ER dr. to call Dr. F and let him decide if she should be admitted or not. 15 minutes later, we were told she was being admitted. We were then told that Dr. Duong would be her attending while she was in the hospital. They finally got her in a room around 11:30pm.

Thursday:
I went home and printed out a current list of Krystal's meds., allergies & reactions, etc... and I handed it to the dr. myself when he came in around 10AM. He said her labs were in range but he was waiting for the cortisol levels. I asked if he was going to give her her cortef and florinef and he said not till he got her cortisol results back. I asked if they were going to do the "med. withdrawal" and he said no; so I questioned his NOT administering the cortef and florinef. He said he wanted to wait for her labs to come back. I though... OK... so, I requested ALL copies of labs as they got them and he said sure, no problem. We signed the request form for labs. Thursday afternoon they came in with Decadron (8mg.) as a one time med. because her cortisol was next to nothing which I had to then explain once AGAIN to them that of course it was nonexistent because she had no steroids in her since TUESDAY because she kept vomiting them up and her body does not produce cortisol.... HELLO!!!! PRIMARY ADDISON'S DISEASE YOU DUMB SHITS! (Sorry!)
So, I asked if they were going to start IV steroids and was told no. I finally got a copy of her labs Thursday evening and noticed that her cortisol level from the night before was .33 in the ER and now was at <0.20. Also, her prolactin level was (range 2.8 - 29.9) was 62.13. When I questioned the prolactin level they called the dr. and he said that it was nothing to worry about because it was from her pituitary. OMG! Here I go again. As far as we know, she does not have a pituitary problem going on.... It's the other daughter with the tumor in her head.... bozos!!!!!!!!!!!! He also said no to another lab test that I inquired about.

Friday:
No steroids in the AM... when I questioned this, I was told the dr. had not ordered the steroids to be administered in the AM. I told them that I wanted to talk with the dr.
Labs were drawn in the AM. I asked for copies for about 4 hours... and finally found out that the floor didn't give the correct orders to the lab so she had only drawn an ACTH level. So, they had to draw again. When I asked if prolactin was being checked again they said no so I asked if they would please check with the dr. and ask him to recheck it. They came back and said that he said no to rechecking the prolactin as it would not change... (oh yes it will depending on the time of day! ARG!) and also told them NOT to give me any more copies of Krystal's lab results and that he would talk to me when he came in but that would not be until after 1:00pm. EXCUSE ME????? Don't give me copies of the lab results???? I DON'T THINK SO!!!! I promptly got on the phone to Dr. Fernandez's office and told them I didn't want this F'ing Dr. near my daughter again and that I felt he was compromising her health and well being. Dr. F happened to be on the phone with Dr. D while I was calling.
Dr. F. called me back instantly and I told him I no longer want Dr. D. treating Krystal as he was withholding her "normal" meds. and refusing me her labs after we signed release forms, etc... and then, through our discussion I found out that he had NOT told the ER dr. to admit her, but rather had suggested she be given the fluids she needed and be sent home until he could take charge of her case (he has been home with the flu) as I knew what to do for Krystal and could care for her at home. Also, he told me that he told Dr. D. to discharge her into his care and that he would take full responsibility for Krystal.

Unfortunately, he is going to be out of town this weekend and not available at all but neither he nor I want ANY other drs. trying to "fix" Krystal this weekend; because all they are doing is putting a bandaide so to speak on the problem and every time they suggest a med and I say it's been tried, they want to try it again anyway. ARG! Or, they won't give her what we know works... I kept saying compazine worked for the nausea but he wouldn't order it.

These drs. are not familiar with her history and what she has been through. It's like every time she goes in, a new dr. thinks he can instantly come up with a remedy or "cure all"... when the 7 specialists who are familiar with her case have not been able to!
So, when the nurse came in I told her I wanted the labs, we had signed a release/request for them and that legally they could not hold Krystal's records from Krystal!
Dr. Duong finally came in about 3PM and was all nice... he asked if I spoke with Dr. F. and I said yes. He said, so you are taking her home right.... I said YEP and I want her lab results! He said oh of course, and handed them to me. He then told me that her elevated prolactin was probably from another med. they gave her.... like the compazine. Again... dumbshit... He wouldn't give her the compazine; we asked for it! Whatever! I have no doubt that the elevated prolactin could be from a med. they gave her... but dude.... know what you gave her and didn't give her at least!

So, If Krystal can make it through the weekend without needing more fluids, I am to call Dr. Fernandez Monday morning at 7AM; before his office opens. We know she will need to be readmitted; but he will be here to monitor and take care of her. He wants to start the med. "withdrawal" process so he can do the testing we discussed. He himself will do this... no other dr. involvement! But he needs a straight week when he is here... we are looking at a 5 day time frame (Mon. - Fri.) if all goes well.

Marge, Shannon and Sue, What can I say... you are like my partners in crime; LOL!!
We are all traveling the same path; continually searching for answer for our kids. :-)
BUT DON'T MESS WITH THESE MOM'S!!! :-) Don't tell us there is nothing else that can be done, don't tell us our kids will just have to "learn to live with it," and do not... I repeat... DO NOT make us angry and say anything rude or derogatory about our kids; because then it's on baby!!!

Leanne (TMP 2) & Neen, Thank you both for your "research" time & abilities whenever I call from hospital rooms!

Hey Jimmy defish, Dick and Bob.... You guys ROCK baby!
And of course Aspen, Susanne, Marti, Doris, Shauna, Valerie, Penny, Karen, Loree', Gwen, JL, Robin, Dusty, Lenna, Patti, and everyone else that I am forgetting to mention right now from the Addison's boards..... Thanks for your continual guidance, support, concern!!!!!
What a plethora of knowledge there is on the boards; and on so many levels!
Again... YOU GUYS... AND LADIES... ROCK!!!!

Will let you know what happens Monday! Keep good thoughts and prayers going this weekend please!

~j~j~j~j~j~

Ren

OHHHHHHHHHHH.... Happy birthday T! And happy belated D~
Both my big brothers... Dave and Ted have July birthdays! YAY for you two. You are the bestest bothers in the world! Neen, Johnnie, and Bobbit.... you are the bestest sisters ever!! I love you all!!! And yes, I am aware that "bestest" is not a real word... :-)

Saturday, July 30, 2005 3:42 PM CDT

Well, here's the latest....

Krystal went into the Evil Room Wednesday afternoon and was admitted that night; she came home last night.

Here's what transpired over the last few days...

Wednesday:
Went into Evil Room about 2:20pm because Krystal could barely walk... They gave her IV fluids, Anzemet for vomiting and Ketorolac for headache/pain. These are two new drugs she has not had before. I wrote down Krystal's "illnesses", meds. and allergies and gave it to them.
7 hours later when they couldn't decide if they should admit her or not, I asked the ER dr. to call Dr. F and let him decide if she should be admitted or not. 15 minutes later, we were told she was being admitted. We were then told that Dr. Duong would be her attending while she was in the hospital. They finally got her in a room around 11:30pm.

Thursday:
I went home and printed out a current list of Krystal's meds., allergies & reactions, etc... and I handed it to the dr. myself when he came in around 10AM. He said her labs were in range but he was waiting for the cortisol levels. I asked if he was going to give her her cortef and florinef and he said not till he got her cortisol results back. I asked if they were going to do the "med. withdrawal" and he said no; so I questioned his NOT administering the cortef and florinef. He said he wanted to wait for her labs to come back. I though... OK... so, I requested ALL copies of labs as they got them and he said sure, no problem. We signed the request form for labs. Thursday afternoon they came in with Decadron (8mg.) as a one time med. because her cortisol was next to nothing which I had to then explain once AGAIN to them that of course it was nonexistent because she had no steroids in her since TUESDAY because she kept vomiting them up and her body does not produce cortisol.... HELLO!!!! PRIMARY ADDISON'S DISEASE YOU DUMB SHITS! (Sorry!)
So, I asked if they were going to start IV steroids and was told no. I finally got a copy of her labs Thursday evening and noticed that her cortisol level from the night before was .33 in the ER and now was at <0.20. Also, her prolactin level was (range 2.8 - 29.9) was 62.13. When I questioned the prolactin level they called the dr. and he said that it was nothing to worry about because it was from her pituitary. OMG! Here I go again. As far as we know, she does not have a pituitary problem going on.... It's the other daughter with the tumor in her head.... bozos!!!!!!!!!!!! He also said no to another lab test that I inquired about.

Friday:
No steroids in the AM... when I questioned this, I was told the dr. had not ordered the steroids to be administered in the AM. I told them that I wanted to talk with the dr.
Labs were drawn in the AM. I asked for copies for about 4 hours... and finally found out that the floor didn't give the correct orders to the lab so she had only drawn an ACTH level. So, they had to draw again. When I asked if prolactin was being checked again they said no so I asked if they would please check with the dr. and ask him to recheck it. They came back and said that he said no to rechecking the prolactin as it would not change... (oh yes it will depending on the time of day! ARG!) and also told them NOT to give me any more copies of Krystal's lab results and that he would talk to me when he came in but that would not be until after 1:00pm. EXCUSE ME????? Don't give me copies of the lab results???? I DON'T THINK SO!!!! I promptly got on the phone to Dr. Fernandez's office and told them I didn't want this F'ing Dr. near my daughter again and that I felt he was compromising her health and well being. Dr. F happened to be on the phone with Dr. D while I was calling.
Dr. F. called me back instantly and I told him I no longer want Dr. D. treating Krystal as he was withholding her "normal" meds. and refusing me her labs after we signed release forms, etc... and then, through our discussion I found out that he had NOT told the ER dr. to admit her, but rather had suggested she be given the fluids she needed and be sent home until he could take charge of her case (he has been home with the flu) as I knew what to do for Krystal and could care for her at home. Also, he told me that he told Dr. D. to discharge her into his care and that he would take full responsibility for Krystal.

Unfortunately, he is going to be out of town this weekend and not available at all but neither he nor I want ANY other drs. trying to "fix" Krystal this weekend; because all they are doing is putting a bandaide so to speak on the problem and every time they suggest a med and I say it's been tried, they want to try it again anyway. ARG! Or, they won't give her what we know works... I kept saying compazine worked for the nausea but he wouldn't order it.

These drs. are not familiar with her history and what she has been through. It's like every time she goes in, a new dr. thinks he can instantly come up with a remedy or "cure all"... when the 7 specialists who are familiar with her case have not been able to!
So, when the nurse came in I told her I wanted the labs, we had signed a release/request for them and that legally they could not hold Krystal's records from Krystal!
Dr. Duong finally came in about 3PM and was all nice... he asked if I spoke with Dr. F. and I said yes. He said, so you are taking her home right.... I said YEP and I want her lab results! He said oh of course, and handed them to me. He then told me that her elevated prolactin was probably from another med. they gave her.... like the compazine. Again... dumbshit... He wouldn't give her the compazine; we asked for it! Whatever! I have no doubt that the elevated prolactin could be from a med. they gave her... but dude.... know what you gave her and didn't give her at least!

So, If Krystal can make it through the weekend without needing more fluids, I am to call Dr. Fernandez Monday morning at 7AM; before his office opens. We know she will need to be readmitted; but he will be here to monitor and take care of her. He wants to start the med. "withdrawal" process so he can do the testing we discussed. He himself will do this... no other dr. involvement! But he needs a straight week when he is here... we are looking at a 5 day time frame (Mon. - Fri.) if all goes well.

Marge, Shannon and Sue, What can I say... you are like my partners in crime; LOL!!
We are all traveling the same path; continually searching for answer for our kids. :-)
BUT DON'T MESS WITH THESE MOM'S!!! :-) Don't tell us there is nothing else that can be done, don't tell us our kids will just have to "learn to live with it," and do not... I repeat... DO NOT make us angry and say anything rude or derogatory about our kids; because then it's on baby!!!

Leanne (TMP 2) & Neen, Thank you both for your "research" time & abilities whenever I call from hospital rooms!

Hey Jimmy defish, Dick and Bob.... You guys ROCK baby!
And of course Aspen, Susanne, Marti, Doris, Shauna, Valerie, Penny, Karen, Loree', Gwen, JL, Robin, Dusty, Lenna, Patti, and everyone else that I am forgetting to mention right now from the Addison's boards..... Thanks for your continual guidance, support, concern!!!!!
What a plethora of knowledge there is on the boards; and on so many levels!
Again... YOU GUYS... AND LADIES... ROCK!!!!

Will let you know what happens Monday! Keep good thoughts and prayers going this weekend please!

~j~j~j~j~j~

Ren

OHHHHHHHHHHH.... Happy birthday T! And happy belated D~
Both my big brothers... Dave and Ted have July birthdays! YAY for you two. You are the bestest bothers in the world!Neen, Johnnie, and Bobbit.... you are the bestest sisters ever!! I love you all!!!

Saturday, July 30, 2005 3:42 PM CDT

Well, here's the latest....
Krystal went into the Evil Room Wednesday afternoon and was admitted that night; she came home last night.

Here's what transpired over the last few days...

Wednesday:
Went into Evil Room about 2:20pm because Krystal could barely walk... They gave her IV fluids, Anzemet for vomiting and Ketorolac for headache/pain. These are two new drugs she has not had before. I wrote down Krystal's "illnesses", meds. and allergies and gave it to them.
7 hours later when they couldn't decide if they should admit her or not, I asked the ER dr. to call Dr. F and let him decide if she should be admitted or not. 15 minutes later, we were told she was being admitted. We were then told that Dr. Duong would be her attending while she was in the hospital. They finally got her in a room around 11:30pm.

Thursday:
I went home and printed out a current list of Krystal's meds., allergies & reactions, etc... and I handed it to the dr. myself when he came in around 10AM. He said her labs were in range but he was waiting for the cortisol levels. I asked if he was going to give her her cortef and florinef and he said not till he got her cortisol results back. I asked if they were going to do the "med. withdrawal" and he said no; so I questioned his NOT administering the cortef and florinef. He said he wanted to wait for her labs to come back. I though... OK... so, I requested ALL copies of labs as they got them and he said sure, no problem. We signed the request form for labs. Thursday afternoon they came in with Decadron (8mg.) as a one time med. because her cortisol was next to nothing which I had to then explain once AGAIN to them that of course it was nonexistent because she had no steroids in her since TUESDAY because she kept vomiting them up and her body does not produce cortisol.... HELLO!!!! PRIMARY ADDISON'S DISEASE YOU DUMB SHITS! (Sorry!)
So, I asked if they were going to start IV steroids and was told no. I finally got a copy of her labs Thursday evening and noticed that her cortisol level from the night before was .33 in the ER and now was at <0.20. Also, her prolactin level was (range 2.8 - 29.9) was 62.13. When I questioned the prolactin level they called the dr. and he said that it was nothing to worry about because it was from her pituitary. OMG! Here I go again. As far as we know, she does not have a pituitary problem going on.... It's the other daughter with the tumor in her head.... bozos!!!!!!!!!!!! He also said no to another lab test that I inquired about.

Friday:
No steroids in the AM... when I questioned this, I was told the dr. had not ordered the steroids to be administered in the AM. I told them that I wanted to talk with the dr.
Labs were drawn in the AM. I asked for copies for about 4 hours... and finally found out that the floor didn't give the correct orders to the lab so she had only drawn an ACTH level. So, they had to draw again. When I asked if prolactin was being checked again they said no so I asked if they would please check with the dr. and ask him to recheck it. They came back and said that he said no to rechecking the prolactin as it would not change... (oh yes it will depending on the time of day! ARG!) and also told them NOT to give me any more copies of Krystal's lab results and that he would talk to me when he came in but that would not be until after 1:00pm. EXCUSE ME????? Don't give me copies of the lab results???? I DON'T THINK SO!!!! I promptly got on the phone to Dr. Fernandez's office and told them I didn't want this F'ing Dr. near my daughter again and that I felt he was compromising her health and well being. Dr. F happened to be on the phone with Dr. D while I was calling.
Dr. F. called me back instantly and I told him I no longer want Dr. D. treating Krystal as he was withholding her "normal" meds. and refusing me her labs after we signed release forms, etc... and then, through our discussion I found out that he had NOT told the ER dr. to admit her, but rather had suggested she be given the fluids she needed and be sent home until he could take charge of her case (he has been home with the flu) as I knew what to do for Krystal and could care for her at home. Also, he told me that he told Dr. D. to discharge her into his care and that he would take full responsibility for Krystal.

Unfortunately, he is going to be out of town this weekend and not available at all but neither he nor I want ANY other drs. trying to "fix" Krystal this weekend; because all they are doing is putting a bandaide so to speak on the problem and every time they suggest a med and I say it's been tried, they want to try it again anyway. ARG! Or, they won't give her what we know works... I kept saying compazine worked for the nausea but he wouldn't order it.

These drs. are not familiar with her history and what she has been through. It's like every time she goes in, a new dr. thinks he can instantly come up with a remedy or "cure all"... when the 7 specialists who are familiar with her case have not been able to!
So, when the nurse came in I told her I wanted the labs, we had signed a release/request for them and that legally they could not hold Krystal's records from Krystal!
Dr. Duong finally came in about 3PM and was all nice... he asked if I spoke with Dr. F. and I said yes. He said, so you are taking her home right.... I said YEP and I want her lab results! He said oh of course, and handed them to me. He then told me that her elevated prolactin was probably from another med. they gave her.... like the compazine. Again... dumbshit... He wouldn't give her the compazine; we asked for it! Whatever! I have no doubt that the elevated prolactin could be from a med. they gave her... but dude.... know what you gave her and didn't give her at least!

So, If Krystal can make it through the weekend without needing more fluids, I am to call Dr. Fernandez Monday morning at 7AM; before his office opens. We know she will need to be readmitted; but he will be here to monitor and take care of her. He wants to start the med. "withdrawal" process so he can do the testing we discussed. He himself will do this... no other dr. involvement! But he needs a straight week when he is here... we are looking at a 5 day time frame (Mon. - Fri.) if all goes well.

Marge, Shannon and Sue.... What can I say... you are like my partners in crime; LOL!! We are all traveling the same path searching for answer for our kids. :-)
BUT DON'T MESS WITH THE MOM'S BABY!!! :-) And do NOT make us angry.....

Leanne (TMP 2) & Neen, Thank you both for your "research" time & abilities whenever I call from hospital rooms!

Hey Jimmy defish, Dick and Bob.... You guys ROCK baby!
And of course Aspen, Susanne, Marti, Doris, Shauna, Valerie, Penny, Karen, Loree', Gwen, JL, Robin, Dusty, Lenna, Patti, and everyone else that I am forgetting to mention right now from the Addison's boards..... Thanks for your continual guidance, support, concern!!!!!
What a plethora of knowledge there is on the boards; and on so many levels!
Again... YOU GUYS... AND LADIES... ROCK!!!!

Will let you know what happens Monday! Keep good thoughts and prayers going this weekend please!

~j~j~j~j~j~

Ren

Friday, July 22, 2005 12:30 AM CDT

I have update the intro. message above and will have Candice put a new pic up later today... I think we need to put up a pic. of the "pony" :-)

Well, the dreaded trip down the ever so familiar evil road and into realm of "The Evil Room" has been an all to familiar trip this past week; we have been there 3 times!
Last week, We spent Monday night and then again Tuesday afternoon there. They were going to admit her but she had an appointment with her gastro. specialist at UCLA on Wednesday so they let her come home knowing that she really needed to go and see Dr. Chang as she is her main dr. now for gastro. problems. The apt. went well. Dr. Chang (UCLA dr.) made quite a few med. changes and she agreed with Dr. Fernandez that Krystal most certainly qualifies for permanent SS disability so I am now starting that long process. Say a prayer and keep your fingers crossed!

The evil room trip last night was another long one; over 5 hours. She was vomiting, headache, chest pains and pressure, and dehydrated; she was crashing. Her vomiting was so much so that she had nothing left, which of course turned into dry heaves which started the burning of/in the esophagus.

The nurse had a very difficult time starting her IV and even commented how dry she was. Her BP was 86/45 with a pulse of 87. They gave her fluids and sent her home. They also gave her 100mg. solucortef, IV compazine, and 2mg. Dilaudid. Her CO2 is low, and her white count and RDW are slightly elevated. We are on the way to her endo. now; will let you know what he says...

Love you all!

~j~j~j~j~j~

Ren

Oh... and Easton, you know she enjoyed the road trip you guys took her on last Saturday night much more than the Evil Room road trips!

Can't get much more "classic" than standing on top of a table singin and dancin with the Hooter's girls!!! You guys crack me up!!! :-) That is definitely what she needed!!
I know she and Brandy both had a blast!! Thank you!!... and thanks to the other guys too. :-) TMP

Mini Update... Saturday 7/23/05:
Went to the endo. apt. yesterday and he (Dr. Fernandez) wanted to talk with her UCLA dr. (Dr. Chang) ASAP. He said we need to do something else because this is not working and Krystal can not continue on like this.

He was going to try and get a hold of Dr. Chang yesterday afternoon and come up with a game plan. Right now Dr. Fernandez is SERIOUSLY thinking of putting Krystal in the hospital and taking her off of ALL of her meds. and starting from scratch. He said he thinks he wants try and "stim" her adrenals and see if anything at all happens but can not do that while she is on her steroids... which she must be on. He said he would admit her, as this MUST be done in the hospital where she could/would be monitored VERY closely because she would have to be off her droids for at least 2 days B/4 any testing could occur. He reassured us at least 4 times that she would be monitored VERY closely as she could crash.
He told us he is off till Tuesday but should she need to go into the Evil Room again this weekend to go to the hospital that he works out of and call him and he will probably have her admitted. If she makes it through the weekend he wants us to call him Tuesday morning and let him know how she is doing and see if he was able to talk with Dr. Chang.

I know she wasn't feeling well last night because Candice was going to take her to see Charlie and the Chocolate Factory (she wants to see this movie so badly!) and she said no... Candice said she will take her to the Stampede tonight for a little while if Krystal's up to it. Hopefully she will be feeling better tonight so she can get out of the house for a while...

Tuesday, July 12, 2005 1:35 PM CDT

Well, the dreaded trip down the ever so familiar evil road and into realm of "The Evil Room" has been an all to familiar trip this past week; we have been there 3 times!
Last week, We spent Monday night and then again Tuesday afternoon there. They were going to admit her but she had an appointment with her gastro. specialist at UCLA on Wednesday so they let her come home knowing that she really needed to go and see Dr. Chang as she is her main dr. now for gastro. problems. The apt. went well. Dr. Chang (UCLA dr.) made quite a few med. changes and she agreed with Dr. Fernandez that Krystal most certainly qualifies for permanent SS disability so I am now starting that long process. Say a prayer and keep your fingers crossed!

The evil room trip last night was another long one; over 5 hours. She was vomiting, headache, chest pains and pressure, and dehydrated; she was crashing. Her vomiting was so much so that she had nothing left, which of course turned into dry heaves which started the burning of/in the esophagus.

The nurse had a very difficult time starting her IV and even commented how dry she was. Her BP was 86/45 with a pulse of 87. They gave her fluids and sent her home. They also gave her 100mg. solucortef, IV compazine, and 2mg. Dilaudid. Her CO2 is low, and her white count and RDW are slightly elevated. We are on the way to her endo. now; will let you know what he says...

Love you all!

~j~j~j~j~j~

Ren

Oh... and Easton, you know she enjoyed the road trip you guys took her on last Saturday night much more than the Evil Room road trips!

Can't get much more "classic" than standing on top of a table singin and dancin with the Hooter's girls!!! You guys crack me up!!! :-) That is definitely what she needed!!
I know she and Brandy both had a blast!! Thank you!!... and thanks to the other guys too. :-) TMP

Friday, June 24, 2005 9:24 AM CDT

We once again went on a family outing of sorts; had to visit the Evil Room in the middle of the night last week. Krystal dropped a coffee table on her foot while cleaning out the garage in the afternoon. This was a new experience for us in the realm of Addison's Disease. This is the first time an "injury" has lead to a crash. Every web site I visit talks about injuries requiring additional meds and possible hospital visits... we now understand the significance of these statements. It wasn't a "serious" incident but enough so that we now know first hand how this chain of events can play out. The pain of the foot injury (not broken; yay!) triggered a headache which intensified quickly, turning into a migraine, which triggered uncontrollable vomiting that we could not get to stop, which lead to her crashing. The headache was so bad that she could not quit crying which of course intensifies a headache. She was feeling so crappy that I had to ask for a wheelchair to take her into the ER and the receptionist who went to the car with me looked at Krystal and I guess because she wasn't bleeding profusely or anything asked sarcastically what was wrong with her to which I replied Addison's Disease and a number of things at the moment. She then said, "And she can't walk in on her own?" I was NOT happy but I was good! :-) I nicely turned to her and told her, "No she can not. Oh, and by the way... you are being very rude and I don't appreciate it." Her charge nurse didn't appreciate the fact that she had said this to us either. :-) So, after anti-nausea meds. for the vomiting, 3 mg. Dilaudid for the migraine, and the standard fluids she always gets, our family outing ended with her being able to go home at 6:30AM.

Krystal had 2 dr apts this week.
1st apt. was with the neurologist...
She has been getting her migraines more frequently again and the maxalt is no longer helping them. This is an unfortunate setback as the headaches had nearly disappeared. STRESS IS NOT HER FRIEND!!
Dr. L has her on propranolol... i.e. enderol. The enderol is supposed to help lower her heart rate (which helps hr POTS) and help alleviate her headaches. When we were in the dr. office her pulse was 92 which is high considering the fact that she was feeling like total crap and she is on 160mg. enderol a day already. So, he's upping the enderol even more. She will take 80mg. 3 X a day. He wants her to add 40mg for 3 weeks and then add another 40mg. so she will take 80mg. 3 X a day.
He is adding another med. also that she wont actually start for another month because he wants the higher dose of the enderol in her system before adding the new med (topomax). One of the side effects of Topomax is possible weight loss so she can not wait to start it.

Her 2nd apt. was with her endo...
He upped one of her meds. and changed another. The phenergan is no longer working for the nausea so he is putting her on compazine instead.

We talked with her dr. at UCLA not too long ago and she made another med change also. Took away one that wasn't seeming to help.

All three drs. agree that her stress levels of late are really knocking her down.
Krystal finally realizes her health can not withstand such a strenuous emotional roller coaster ride and is working diligently on controlling this area.
Candice and the guys are all helping in this area...the girls went to the Stampede last Saturday night. They met up with some friends there and had a blast.
Krystal, Dusty and Easton now have an "official" date night... Thursday night after field day. We will just say that she is the designated driver to and from the movie theater and leave it at that... :-)
Casper brought over his bike thing Wednesday night (LOL... don't know what it's called) and hooked up the bike to make it stationary so Krystal can "ride" it in the house and exercise. She has been able to start walking in the evenings also. She and Casper took Arwen for a walk to the park Wednesday evening before he went out.

The temps. have warmed enough that it was time to put the air conditioner back in Krystal's room. Dusty and Easton were home (but then again, they are home most nights) so I asked them to help me move the air conditioner into her room cuz its too hard for me to get in from the garage. So, I went out to the garage moved everything out of the way so they could push/roll it in and they walked out there, took one look at it and Easton just picked it up and carried it in like it was nothing... YAY!

Thanks guys!
Love you all!
TMP

~j~j~j~j~j~
Ren

Saturday, May 28, 2005 2:23 PM CDT

Hi guys,

Sorry it's been so long between updates. Well, say a prayer and keep your fingers crossed... :-)

It has been a week since Krystal had any "major" vomiting. YAY!!!!!!!!!!!!

We have been increasing the new med. regime as the dr. instructed but for the first few weeks we saw no change and we were getting worried. But this last week has been so much better! So much so, that she has been able to start exercising again!
Casper got home from his trip last Sunday afternoon (5/22) and brought back his bike trainer; oh and some booyah and home made jam; yum! Thanks Debbie!! :-) He set the trainer up for Krystal and she has been riding every morning after he goes to work. She can't ride long, but she is trying. Just the fact that she is feeling well enough to start exercising is awesome! More YAY!!!! :-)

OK, after a conversation I had with a person online about Addison's and weight gain I need to vent and rant a little so here goes...
for simplicity sake, I am going to use Krystal as my example.

You know, it's a funny thing, Krystal MUST take her steroids... or she will die.
When she gets sick, she MUST have extra steroids... or she will die.
When she is given extra steroids (that save her life!) she is susceptible to secondary infections; which cause more problems, which cause her body to need the higher doses of steroids for a longer period of time.
And in turn the added steroids REALLY make her gain weight.
And when she puts on the weight... it stresses her out... which over the past year have learned...
STRESS is probably the hardest thing on a person with Addison's!!!!
I think... NO, I KNOW, stress drops her faster than anything!!!!
And anyone who has EVER gained weight from steroids knows... IT IS NOT AS SIMPLE AS EXERCISING to get the weight off!!! ARG!
People who don't live with Addison's themselves (or live with a person who has Addison's) ALWAYS misconstrue the situation and can be very overcritical; thinking a person with Addison's is being lazy, just not trying to exercise, doesn't care about their weight, etc...

With Addison's you must factor in a couple of important things...
To start with:
1. You don't have a lot of energy for any long period of time anyway... even when you are feeling good and "healthy". Your body does not have the physical ability to go, and go...
2. If you have "crashed" or have been in the hospital your energy level is even lower due to your body using most of it's energy "fighting" to get back to it's normal state.
3. It is MUCH more difficult to loose "steroid weight" (medically proven fact!) than weight you have gained from say overeating, or having a baby, etc...
4. When your energy is already low, and you try to exercise, you must go slow... you CAN NOT push your body like "normal" people do or you will crash and could end up back in the hospital; back at square one and gaining even more weight because will have to be put back on the higher steroids!
5. It IS going to take an Addisonian probably 5 times longer (if they are lucky) to loose the added steroid weight they have gained from being on higher doses of LIFE SAVING steroids!!!
6. Exercising drains an Addisonian MUCH faster than a healthy person's; making it PHYSICALLY impossible for them to do prolonged periods of exercising!

I am NOT talking about anabolic steroids like people take when they are trying to "buff up"...
I am talking about Glucocorticoids (hydrocortisone; i.e. Cortef) and Mineralocorticoids (Florinef)...
The kind of steroids an Addisonian MUST take every day of their life... or they will DIE!

So why is it that some people just don't get it??? No matter how many times you try and explain it to some people, THEY JUST DON'T GET IT!
She is NOT just being lazy; her body physically does NOT have the energy!
It is NOT a matter of "not trying" to loose the weight; it is a matter of not being ABLE to loose it as fast as "healthy" people can!
She DOES care about her weight; being overweight bothers HER more than it bothers YOU!... or anyone else!

OK, I'm done with my rant... :-)

Easton & Dusty,
We have had conversations about this ... and I must say, your understanding of the steroids and weight issues are impressive. Also, you guys asking about and trying to understand Krystal's Addison's Disease really shows what good friends you are. You guys are awesome people! Thanks for being such good friends.
Casper,
TSP... you know that your continual support and understanding play an essential part in Krystal's well-being! Thank you for caring like you do and for always being there for her!
TMP

Oh, if any of you have a little time, this site has some good info. about Addison's.

http://www.medicinenet.com/addison_disease/article.htm

I hope you all have a good weekend and PLEASE remember what Monday is all about... our fallen hero's and their sacrifice for us and our country!!
Please say a prayer for their families!!

~j~j~j~j~j~

Love you all!
Ren

Monday, May 9, 2005 7:56 PM CDT

Hi guys,

Well, we got Krystal into UCLA early!!! YAY!!!!!!!!!!!!!!! The dr. here was going to keep her in the hospital longer but we got a call that they had a cancellation at UCLA, so he released her so she could go there.

She crashed (Addison's crash) twice in the hospital; it was NOT a good hospital stay. The IV's kept infiltrating so she ended up with a new IV every day. At one point they brought in an ICU nurse and he did an ultrasound on her veins to find one he could hit. One week and 13 poke holes in the arms later she is home. Her right arm ended up with a couple of blood clots (which she is hot packing) from the stupid arrogant nurses. They REALLY piss me off some times.
On Thursday, as a nurse was trying to start an IV (4th IV), Krystal was upset and not feeling well and the nurse told her to stop crying or she wouldn't start the IV. Boy did I shoot her a look and she knew I was pissed so she followed it up with, "If you don't stop crying I will cry too." She then had the audacity to make a remark about the dog tags Krystal wears (an extra set of Casper's). She said, "Dog tags, why are you wearing dog tags? Dog tags are for dogs." I think she was trying to be funny but I was SO NOT HAPPY!!! I instantly, but diplomatically of course, told her she was wrong and let her know that the dog tags belonged to Krystal's boyfriend... the marine in the poster hanging on the wall (we made a huge poster with pics. of "Tink & Casper" for her hospital room) and that he had just got home for the second time from Iraq... Oh she knew I was not a happy camper! Oh yea, and afterwards, Easton wanted to go and have a talk with her too... hehehe... :-)

The UCLA dr. (Dr. Chang) seems very nice and she is VERY confident that she can help Krystal with her gastro. problems. She made a few med changes and added a couple new meds. too. We were told that this will take some time though so not to get discouraged; and if this regime does not work, there are other options to try. Sooooooo... YAY!!!!!!!!!!!!!!!!!!!!!!!!! Please say a prayer that this works as Krystal is still vomiting quite a bit. If we can get this under control it will really help in managing her Addison's.

She now starts the very frustrating, slow, and extremely difficult task of loosing the "steroid weight" she gained while in the hospital. They had her on 200mg. solu-cortef daily. Her norm is 25mg. a day which we had to taper her back down to. She had just lost the weight from her Oct./Nov. hospital stay so she is bummed about this new gain. Weight gain from steroids is very common and unavoidable (look at Jerry Lewis) and also very difficult to loose.
Krystal has asked Casper to help her exercise and loose the weigh when he gets home. He always tells her that her weight doesn't matter to him but he knows it bothers her. He is very encouraging and supportive.

Casper is home on leave in Wisconsin with his family for about 2 more weeks. Krystal was very disappointed that she was not able to go with him (that was the original plan) but she was so excited that he was able to go home and see his parents, sister Amy and all his relatives and friends. She talks with him all the time but of course, can't wait till he's home; she misses him terribly.

Please keep Shannon, Nick's mom, in your prayers. She has been very ill.

~j~j~j~j~j~

Love you all,
Ren

PS: Many of you have asked about the journal entry regarding 3/5 Kilo's homecoming day. If you click "Read Journal History" you will find it there. It is the first entry at the top of the page.

Sunday, April 24, 2005 8:20 PM CDT

Well, it took me a while, and this is extremely long, but here it is... this journal entry is about "our marines" and the homecoming. When you have the time, I hope you will read it!

Krystal and I were honored to also attend the 3/5 memorial service but for personal reasons, I will not be including anything about that day.

Krystal has put a link below to the homecoming pictures! YAY! :-) For some reason, if you use "slideshow" it only shows some of the pictures. You can scroll manually and view them all; many are redundant, but we have included them all any way. :-) Click the homecoming link below "View Guestbook"; NOT the "view photos" picture. She will be adding photos soon from the day a couple of the guys visited my school.

Krystal is hanging in there. She has "crashed" a few times since Casper got home (especially after trying to learn to snowboard) but it was kind of expected as we know that emotional stress, good or bad, will totally drain her. She has really upped her salt intake and it has helped a bit. Green olives are her "salt preference" of the week. :-) We are still just waiting for her UCLA apt. on May 11th.
~~~~~~~~~~~~~~~~

To my boys, Casper & Easton... and all of the other marines who I have had the honor of meeting (online or in person)... you are amazing men.
Jason A., I thank you and your men for giving us your time and sharing a part of yourself with our kids.
Jesse T., thank you for the many wonderful emails and letters!
Sgt. S., TZ, Magic, Dusty, Ben D., Bob P. and all the others Krystal or I have met recently... Welcome home boys! We missed you all and are so happy you are home with your loved ones! We are more proud of you than you will EVER know!!!
To all of you... Thank you from the bottom of our hearts for your service to our country!
You are all welcome in our home any time!!
Semper Fi gentlemen!!!

Raquel... Thank you for all of your help over the past few months and for including us as "family!" You are an amazing woman!
Gayle & Deanna... Thank you for the support and continual contact these past few months. I have not had the privilege of meeting your sons yet, but hope to soon. They are welcome in our home any time! You are both amazing moms and people! Thank you both for your friendship!
Deanna... If I am correct, I believe your husband was the first recipient of a lei at the homecoming; was he not? :-)
TSP 2... Girl, you are my saving grace; my Godsend! Thank you my friend! We have been through A LOT together over the past several months. I am thankful that we found each other and amazed every time we talk at the similarities! :-) Love you bunches!
Love,
TMP
OH! And TSP... Happy 21st birthday!!!!!!!!!!!!!!!!! Hope you enjoyed your snowboarding trip and your birthday dinner celebration; what you remember of it that is. :-)
Have a good time on your trip home to WI.; be safe!! Love, TMP
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The day was amazing; truly amazing! When we first arrived, we could see the families gathered, waiting for their marines to come home. The mood was as you would expect; incredibly upbeat and the scene was festive. There were hot dogs and sodas and even a Bounce House for the children.
People wandered about, introducing themselves to one another; forming instant bonds through the associations and friendships of their marines. Many of us, who for months now have frequented a "Marine parent & family" web site, hunted each other down; finally putting faces to those we had formed such bonds with over the past seven months. It was not as though we were meeting new friends for the first time, but rather seeing old friends we had not seen in some time. The camaraderie among the family and friends who were gathered here was extraordinary.

Candice went into her normal "protective sister mode" and watched over Krystal, as Krystal and her friend Charly began their self proclaimed task at hand ... handing out the red, white and blue leis, yellow "Support Our Troops" car magnets, and hand held flags we brought with us. They handed one to each person they passed. Their benevolence was exuding as the girls circulated through the crowd, their arms draped with the leis and carrying the car magnets in their hands. You could see the joy on their faces; their smiles beaming from ear to ear and their pride showing through a little more with each lei they handed out. People began approaching them, asking if they too could have a lei, a magnet or a flag. The girls handed them out as quickly as they could and within 10 minutes the 250 leis were no longer hanging from the girls arms and their hands were empty. The leis now hung with pride on the necks of marine moms, dads, children, family and friends... and dogs... yes, dogs! And the flags and magnets adorned clothing. IT WAS AWESOME! Krystal and Charly stood there looking around, smiling, wishing they had more leis to hand out.

Krystal looked incredible. She was so beautiful in her paisley top and blue jeans; but that is not what I mean by incredible. She had a look I had not seen in months. Her smile was amazing and her face had the most beautiful natural rosy color to it. She looked good physically, but for the first time in months she actually felt good. For those of you who suffer from Addison's Disease as Krystal does, or from any other "physically draining" disease, I know you will totally understand when I say, the excitement and anticipation at this point in the day were still in her favor. It had not yet begun to take over her body and drain her. The statement that is said to her on an almost daily basis, "You look good. You must be feeling better" was a truly accurate statement for the first time EVER! She looked good, was happy, and she felt good! I was so incredibly captivated by her happiness that I just stood there watching her.

When Krystal would disappear in a crowd or I could no longer see her, I would turn to Candice and ask her where Krystal was; knowing that- just as she always does, Candice knew exactly where Krystal was and how she was doing. She is such an amazing sister and always watches out for Krystal.

We had been waiting about an hour and a half when the first announcement was made that the buses were making their way towards the armory and should be arriving here within an hour. Candice found a place for Krystal to sit and rest. They and Arwen were hanging out there. The day was starting to take it's toll on Krystal just a bit.
I was standing talking with Sgt. A. when the announcement came over the bullhorn, "The buses have left the armory and will be here in approximately two minutes."
Most of us were already standing, but when that final announcement came, everyone got on their feet and moved to the edge of roadside. We knew the direction the buses would be coming from; it was the same road we had all driven down to get here. We stood there, all looking in the same direction, our eyes locked on that bend in the road, as if our stares would bring the buses to us a little quicker. We waited impatiently for our first glimpse of a bus to round the bend and head down that final stretch of road that would bring our marines home to us, and into the so many loving arms that awaited them; safe at last.

I stood there with Sgt. A., looking around at the excitement and happiness I was surrounded by, taking in all that the moment had to offer; knowing that I was about to become a part of history in the making. These marines of Kilo Company... the 3rd Battalion, 5th Marine Regiment were returning home from war; returning home from Fallujah, Iraq.
These were the very marines who pushed in and through Fallujah in November and December. Fallujah, the city we have all heard so much about and watched on the news almost daily. It is a city that we have all heard of and seen pictures of, yet our brains don't quite grasp the realistic concept of what actually transpired there, and we never will, because we were not there ourselves.

As I stood there, pondering these thoughts, a solemn feeling swept over me and only one thought ran through my mind... the moms & dads, brothers & sisters, wives, girlfriends, and children of 9 marines are sitting at home right now, knowing that these buses are pulling in today without their sons, husbands, brothers and fathers. They had said goodbye to their men 7 months earlier, as these very buses pulled away, with their marine, and now, these buses were returning... but their marine would not be walking off the bus into their waiting arms. How very sad I became at that moment. My heart was breaking for them; the sadness was overwhelming and the tears began to fall.

As the tears streamed down my face I realized that it was a mixture of joy and sorrow; of elation and guilt. Casper and Easton,"our marines," were home safe and I was so relieved and thrilled. Although, at the same time, I felt such a sense of sadness and guilt. The emotions interchanged as I felt the excitement and anticipation of waiting to see the buses drive up, yet, at the same time knowing that others were sitting home in the deepest of sorrows at that very moment. I took a moment, and quietly asked God to comfort each and every family member of the fallen heroes. These 9 heroes, complete strangers, who I never had the privileged or honor of meeting in person, will always have a very special place in my heart.

Then, in an instant, the cheers erupted as the first bus rounded the bend. This moment must have played out in everyone's mind at least a thousand times. It was very surreal. All of the anticipation and expectations were finally becoming a reality. Then another, and another. The clapping and cheers continued, and escalated. And with arms stretched out, the flags waved high as the buses, 4 in all, passed us and pulled into the parking lot.

The doors opened, the marines began to step off the buses and then it began... family members anxious to find their marine, quickly made their way through the crowds, looking, searching the faces of those who had just walked off the buses, trying to find their marine, until you would hear a scream, or see a girl run and jump into the arms of her man. And somehow, in the sea of desert cammies, Krystal saw Casper and quickly made her way to him. We found Easton shortly after.

This homecoming was one of the most amazing experiences I have ever had the privilege of being a part of. I know I will remember it for the rest of my life!

I have always had the greatest respect for our veterans; and for what they have given and gone through for our country and for us. Over the years as I was growing up, my dad shared many stories of his experiences in the army. I loved listening to his stories; but they were just that... stories that he was sharing with us. I guess in a way I could not comprehend the reality; having not been alive when this all took place.
Even as an adult, I did not fully understand what friends and family members go through when someone they care about is deployed to a country where there are hostile situations taking place. Well, not until now, that is. For the first time, not only in my life, but in my girls' lives as well, we know. It is no longer just a TV show, a news broadcast or a movie. It is now a reality; and it is our reality. We have experienced the feeling and emotions that go with having someone we care about go to war, knowing they are in harms way day in and day out and knowing that it is a real possibility and a reality that they may not come home.
It is not an experience I would wish on anyone. For the past 7 months, every time the phone would ring, or there was a knock on the door when we weren't expecting anyone to come by, or we would hear the sound of a car door slamming out front, my heart would drop. Before I would answer the phone I would look at the caller ID to see if it was a call from base. And every time I would walk to the door to open it, before I would answer the front door, I would say a quick prayer that there would NOT be men in uniform standing there.

The circumstances these marines were placed in, the experiences they have been through (some of which they will talk about; others, understandably, they will not), and the unthinkable conditions they had to live in... most of us will never understand. These men share a closeness, and have a such a bond that which we could not even begin to comprehend, they call each other brother; and rightfully so!

Each and every one of these marines is a hero, and should be treated as such. They all deserve the utmost respect and gratitude of each and every one us! Whether anyone thinks "we" should be in Iraq or not... our marines... our boys, our men, deserve our respect and our unending and unwavering support.

Thank you to all of our family, friends and neighbors who have shared this journey with us in one way or another, over the past 7 months. Thank you to everyone who supported our boys by sending letters and/or supplies to them while they were in Iraq; and for the daily emails and prayers by so many of you.
The show of support by our neighborhood since the boys got home has been amazing, and so very touching. From the huge "Hero" sign put up on the fence in the middle of the night, to the plant and thank you card left on our front porch; the brownies, the fruit, and the thank you cards that were left in our mailbox... all amazingly wonderful gestures. And to the many people who have just stopped by to say hi and thank you to Casper and Easton... we in return would like to say thank you! Your show of support has touched our hearts more than you can ever imagine.

We are truly blessed to have such wonderful family, friends, and neighbors whom care about us and "our marines," and have been there every step of the way while Casper and Easton were gone. Thank you from the bottom of our hearts!

Love you all!

~j~j~j~j~j~

Ren

Tuesday, April 12, 2005 12:17 AM CDT

Well, obviously, as you can tell by the new picture...

~~~~~~~~~~ CASPER IS HOME!!!!!!! ~~~~~~~~~~

Krystal is still on cloud nine. She has had a few down moments (vomiting & exhaustion wise) over the past week but for the most part she's done pretty good. Saturday night, we almost had to make the ever dreaded ER run, but she was able to avoid the visit to the "Evil Room." :-)
She got smacked in the forehead while playing with Arwen (lab) and got a pretty bad headache. That in combination with the excitement and lack of sleep, etc., kinda hit her all at once; but she was determined not to have to go in. My very good friend Leanne (TMP2) and her son "Magic" had come to visit. Magic was deployed with Casper. The boys were shooting pool so Krystal went and laid down. She didn't want any fuss over her and wanted Casper to be able to relax and enjoy himself. The extra steroids worked... YAY!

I know that this page is to update all of you, our family and friends, on Krystal's health but I am compelled to share my thoughts and experience with you regarding the homecoming last week...
hmmmm... think I might add it on here tonight. I think I shall ponder a while... :-)

~j~j~j~j~j~
Love you guys!
Ren

Thursday, April 7, 2005 7:56 AM CDT

TODAY IS THE DAY!!!!!!!!!

Casper comes home this afternoon!!! YAY!

I just had to share this with everyone.... just how amazing our neighborhood is...

Yesterday afternoon Chuck was out weeding and a car pulled up, a lady gets out (we don't know her) with a huge potted plant (Bromeliad) and said to Chuck, "I wanted to do this anonymously so I am just going to leave it on your doorstep." She said it was for "our" marine who is coming home. When Chuck asked if she wanted him to say who it was from, she replied, "Just someone in the neighborhood." She then put the plant and a beautiful thank you note on out front porch and left.
And then about 9:00pm we hear a loud sounds coming from outside, go out and someone had stapled up a huge banner probably 12 feet long that says, "Welcome Home, USA Hero!" We have no idea who put up the sign... Krystal was so touched and overwhelmed she just started crying!

OMG you guys! Isn't this awesome?!!!!

Thank you all for your continued support of Krystal and Casper (Brad) while he has been deployed! He is now on his way home! YAY!!!!!!!!!!!!

Love you guys!

TSP... WELCOME HOME SON!!! Love ya! TMP

~j~j~j~j~j~

Ren

Friday, April 1, 2005 8:25 AM CST

Well hello to the wonderful month of April!!! Woo hoo!!!!!

Quick update to let you all know that Krystal is doing pretty well. We are playing the waiting game now until her UCLA appointment. Physically, she's been doing pretty good... more good days than bad and we love it!!! She actually had an apt. with the endo. last week and he did a slight med change and it seems to have made a huge difference. YAY!!!! She goes back to him next Wednesday for a recheck.

Emotionally, she is doing OK but on a bit of a roller coaster right now... excitement and anticipation can be draining!

The countdown has begun...................

~~~~~~ 6 DAYS TILL CASPER COMES HOME!!!!!!!!!!!! ~~~~~~

We are all very excited. But I am a thinking that Krystal may be just a tad more excited than the rest of us! :-) Hmmmmm... ya think???!!! LOL!

TSP... have a safe trip home! TMP

Will keep you all posted!!!!

~j~j~j~j~j~

Love ya!
Ren

PS: Please keep Nick Snow in your prayers... he's having a rough time right now.

Friday, March 18, 2005 8:15 PM CST

Woo hoo!!!!!!! We finally got an appointment at UCLA!!!!!! Unfortunately, it's not till May 11th; but it's an appointment! I talked with the nurse there for some time and she put Krystal at the top of her list to call if they have a cancellation. YAY!!!!!!!!!!!!!!!!!!

HAPPY DANCE, HAPPY DANCE, HAPPY DANCE!!!!!!!!!!!!!

Krystal has been doing OK... not great but we get excited over "OK"; again... we'll take it! This week she's been pretty wiped out. We went to the Irish Festival last Sunday and stayed about 6 hours... that was too long. : ( She's been down since then. But the day was so fun and you just have to have a day like that once in a while!! We wanted to take Pyro to see her most favoritest (hehehe) singer in the whole wide word... Alex Beaton. What an incredible nice gentleman! If you like Scottish music you should check out his site. You can listen to samples of his music on some of his CD's. (and buy his music)
http://alexbeaton.com/
We got home around 7pm and Krystal went to bed and slept for almost 2 days straight; and since then, she's been asleep more than awake. Check out the picture on the photo page of Krystal, Grandma B. AKA "Pyro," and ALex Beaton. : )

We had 3 marines from 3/5 visit my school last week. Krystal came and helped us out. These guys are home because they were injured in Iraq and are recovering. We so appreciated them taking the time to come and visit with the students. What truly amazing men they are!!!! It was an awesome experience for all involved. We are hoping more marines will be able to visit when the rest of them return; which should be in LESS THAN 3 WEEKS!!!! YAY!!!
OH!!!!! Welcome home Robert! And thank you!!!! He's back from Iraq baby!!!! YAY!!!

TSP........ Peeps is counting down the days... as is anyone who drives by our house and sees her HUGE sign on the garage! We will put a picture on here soon! BE SAFE!... TMP

Will let you al know if we get Krystal into UCLA sooner!

Please say extra prayers for Renee's husband. Renee is a teacher (super nice lady!) at my school and is expecting her first child soon. Her husband was in a very serious motorcycle accident Wednesday and is in ICU!

Thank you all for your continued prayers and support!

~j~j~j~j~j~

Ren

Sunday, February 20, 2005 10:43 AM CST

Well, it is amazing but true... my daughter is speechless!
Actually, she has lost her voice. : ) She is now dealing with a sore throat and the bronchial "crap" that is going around.

She was released from the hospital Wednesday night and had the sore throat by Thursday night. By yesterday morning, the voice was history...
We have doubled up on her steroids for now to help her fight this. She saw Dr. Fernandez (endo.) Friday. Her BP was running about 87/48 and it kind of startled the nurse a bit... Heeheehee. I guess we are just used to the weird/low numbers.

She has not heard from Casper in a little over a week so she probably will this weekend. If he had access to a phone I know he would have called her; especially on or near Valentine's Day. What a way for her to spend her Valentine's Day... in the hospital. : (
One of the nurses she had remembered her from Oct./Nov. and commented that she was there when Casper called from Iraq last time and she would make sure the call got put through if he was able to call this time. : ) They are really good about that there. Not too good about a lot of other crap, but the phone calls from Iraq.... they do good with! YAY!

Will let you know as soon as we hear anything on/from UCLA.

Thank you all for your wonderful comments you always leave. And also for the continued well wishes, good thoughts and ongoing prayers for Krystal, Casper and all the guys in Iraq.

TSP... we are all counting down the days!!!
BE SAFE!
TMP

~j~j~j~j~j~

Ren

Wednesday, February 16, 2005 1:27 AM CST

Krystal is in the hospital again. Crashed big time Monday. 4 bags of fluids and the solu-medrol didn't help. Grandma B. and Krystal were in both in the ER at the same time. Grandma got to go home; Krystal had to stay. They gave her dilauted (sp?) and her bp dropped to 89/24 with a HR of 87. It's averaging about 90/38 HR 98 tonight.

OH!!! Her Gastro. is referring her to UCLA finally. (The two are a coincidence of timing).
He said he thinks she might be a candidate for a procedure where they put a pace makers in the stomach. How weird is that?!!!

I'm so tired I need to lay down for a few hours B/4 heading back to the hospital. I'll try and fill in the blanks tomorrow night!

Please keep Grandma B in your prayers. And of course, Casper, TZ, Magic, Weston (Easton), and all the guys in Iraq too.

~j~j~j~j~j~

Ren

Thursday, 2/17/05
Krystal is home!!!!!!!!!! They released her last night. YAY!!!! I will update more later... off to work now! : )

Happy dance, happy dance, happy dance!!!!

Thank you all for your continued prayers for Krystal (and for Casper too)!

~j~j~j~j~j~

Ren

Sunday, February 6, 2005 3:44 AM CST

Well, I have started to update this numerous times this week and each and every time I get frustrated and it turns into more of a bitch session than an informational update; so I just delete it. I guess I shall try again...

We got the test results back on the last two tests. The 24 hour PH test showed high levels & the motility study showed that Krystal's esophagus is spasming. The dr. said it's like having charlie horses of the esophagus. I asked if he knows what is causing all these problems and he said, "No." He now has her trying peppermint; he says it is known to soothe the esoph. and hoped it would help the nausea and vomiting. WELL, IT'S NOT WORKING! ARG! Krystal went over a week without any vomiting and was feeling so well and now she's back to throwing up just about everything she eats.
We totally expected the dr. to refer her to UCLA when he got the results but he didn't. I even asked him if he was going to but he wanted to try the peppermint thing. She is supposed to give it two weeks but this is just ridiculous. I am calling him Monday to get her back in there! She was so sick last night we were just about to make yet another trip into the ER but the anti-nausea meds. worked. She really hates having to take them because they put her to sleep. SO all she is doing is sleeping the days and nights away. She says the ONLY good thing about sleeping her days and nights away is when she's awake it's just that much closer to the day Casper comes home.
She was doing OK today and then as soon as she ate, she threw up. She is so frustrated right now and I can not blame her! We need to get this taken care of. BY 8PM she was sitting on the bed debating if she needed to go into the ER or not. I think part of the problem is she is partially dehydrated continually from the vomiting so her body is just not able to get back to 100%.

I will let you know how the next week goes...

Ohhhhhh.... tomorrow is Super Bowl; well, technically today since it is 2AM right now. You know what that means... YEP! New commercials! YAY! : ) LOL!

As always, please keep Casper and all of our guys from 3/5 Kilo in your prayers.
TSP, BE SAFE! TMP

Also, my friend's daughter is in the hospital having a very rough time right now... please keep her and her family in your prayers!

~j~j~j~j~j~

Ren

Sunday, January 30, 2005 12:05 AM CST

"Tonight I have lit three candles.
One for our Troops whom we should support regardless of our political views;
One for our Fallen Heroes and their families;
And one for the people of Iraq, whom today, for the first time, are voting as a free people.
May God bless you and yours.
P.S. I lit one just for Annette and her family, because she is the type of wonderful mother I hope to be someday. God bless you all." (A post by Krystal on a "marine family" web site she posts on.)

In the midst of ongoing tests and awaiting results, Krystal's focus is, as always, on others. What an amazing daughter I have!
Well, actually both of my girls are quite amazing. Candice has started a troop support group on a site she frequents also, calling it "Proud to be an American." The site name is of course inspired by the Lee Greenwood song of the same name.
I could not be more proud of my girls! :-)

Krystal had the esophageal motility test and the 24 hour PH test Thursday/Friday. The motility test was first. It was a rough one; she had troubles with the tube (1/8" dia.) in her nose/throat. After the dr. finished the motility test, he removed the tube, she threw up a few times (which is a major bummer in itself as she had gone over a week without throwing up) and then it was on to the 24 hr. PH test.
He inserted another tube, this one smaller (1/16" dia.), with wires and sensors in it. She said the 24 hour test was one of the worst tests she has had to endure. The tube they put in her nose & down her throat really bothered her and made her very nauseous. She had to take vicodin in order to tolerate the tube for the required 24 hours. She really hates having to take any more meds than she already takes but she would not have been able to keep the tube in without the meds.
Dr. Marks said he would have the results to Dr. Adamany Monday so if we don't hear from Dr. A. by Tues. or Wed. we are to call him.

Will let you all know as soon as we hear anything.

The elections in Iraq are over... but please continue to pray for the safety of our troops and for the people of Iraq.
Also, please keep Annette (the lady that Krystal mentioned above) and her family in your prayers. She is a very dear person and a wonderful mom who lost her oldest son, marine Lance Corporal Chris Adlesperger (20 yrs. old) on Dec. 9th. Chris was KIA in Iraq; he was with 3/5 Kilo Co.

A student at my school, writing a get well card to WIA (wounded in action) marines of 3/5 Kilo Co., put it so well...

"Away with Superman... you guys are the REAL heroes!" Semper Fi!!

Casper,
TSP... you, Magic, TZ, Easton, Robert and the thousands of others serving in Iraq... you guys ARE our heroes!!!!!
BE SAFE!!!!
TMP

Another prayer request: Jarrod, the great nephew of my very dear friend Marti, is in the hospital in very serious condition; he has encephalitis. Please keep Jarrod and their entire family in your prayers.
~j~j~j~j~j~

Ren

OOOOHHHHHH!!!!!!!!!!!!!!!!!!....
HAPPY ANNIVERSARY T & C... 34 years today baby!! Woo hoo!! Way to go guys!

Sunday, January 23, 2005 9:40 AM CST

Today is day 7! 7 days of no vomiting!
Woohoo!!! YAY!!!!!!!!!!

Last night was not the best and she had to take her anti-nausea meds but they worked. So, we count it as a good day. : )
Friday afternoon she got to talk with one of Casper's friends and then Friday evening we talked with another one for about an hour. That was very cool. And then Saturday morning she talked with Casper. So, see, overall it's been a good week!
She has not been vomiting, she's been able to go out and garden 3 or 4 days, got in a bit of exercise, and ended the week by talking with her honey... life has been good to her this week. Let's keep it going! She is counting the weeks & days till Casper comes home, she misses him so much; and he her. The first thing he asks about is how she is and what's new with the drs. He is such a good person!

Please keep good thoughts going for Krysatl and for her Casper! The elections are coming up in Iraq and I think we all need to say a few extra prayers for all of our boys over there!

I really like the saying below "Moments in Life"... I told Krystal this is her & Casper's saying because when she met Casper her door of happiness was opened. When she realized he was standing in that open doorway her whole life changed. He makes her heart smile and she does the same for his. They are both very lucky they found each other. And the line about the happiest of people... well, we all know Krystal always tries to make the best of every situation she is put in and I think it goes without saying that Casper is having to do the same right now with where he is at and what he is having to do and deal with.

Casper...
TSP, you and all your men, Be careful and BE SAFE... We are all so proud of all of you and miss you very much! Come home safely! TMP

~j~j~j~j~j~

Ren

MOMENTS IN LIFE

There are moments in life when you miss someone so much that you just want to pick them from your dreams and hug them for real!

When the door of happiness closes, another opens; but often times we look so
long at the closed door that we don't see the one which has been opened for us.

Don't go for looks; they can deceive.
Don't go for wealth; even that fades away.
Go for someone who makes you smile, because it takes only a smile to make a dark day seem bright.

Find the one that makes your heart smile.

Dream what you want to dream; go where you want to go; be what you want to be, because you have only one life and one chance to do all the things you want to do.

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.

The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.

The brightest future will always be based on a forgotten past; you can't go forward in life until you let go of your past failures and heartaches.

Wednesday, January 19, 2005 10:12 PM CST

Way quick update!!! Just had to share this...

LIFE IS GOOD BABY!!

NO PUKING FOR THE LAST 3 DAYS!!! YAY!!!!!!!!!! Now THAT is awesome!!

This is a first since Krystal was in the hospital that she has not thrown up on a daily basis! WOO WOO BABY!!! And she is feeling better! She has even been able to walk and run a little yesterday and today. Makes me wonder if all of this ties into the bacterial infection in some way. Hmmmmmm.......

Keep good thoughts going for her (and for Casper and the guys too)!!!!

~j~j~j~j~j~

Ren

Wednesday, January 12, 2005 5:45 PM CST

Hi guys!

If this entry makes no sense, see my entry dated Jan. 7th for an explanation of the tests going on.

We got a couple of Krystal's test results back today. The gastric emptying and the sitz marker study; both were abnormal. The emptying test showed food still in her stomach 90 minutes after she ate; none had cleared. The sitz study showed "markers" in her colon after 5 days; all should have been gone. One more test to do; the 24 hour motility test. I talked with the drs. office yesterday and they moved it up to Jan. 27th and if they have a cancellation next week, they will call. They wanted to do it tomorrow but Krystal needs to be off of 2 of her meds. for a week B/4 they can do the test so she stopped the meds today and we have to wait till next week.
We think if she has to wait till Feb. she will end up in the hospital before then. When we get those results back the dr. said he thinks he wants to refer Krystal to UCLA as they have specialists for this there.
She is so weak; I am a bit concerned. I even had to help her walk to the car when we left the dr. office yesterday. She can not keep anything down; not food, not liquids... nothing. But she is still not loosing weight which, from what I have been reading up on, seems to go with a couple of the things the drs. are looking at as possible problems.
I know she's feeling pretty bad because she actually asked me to stay home from work today with her; and that's a first.

Upbeat note...
Casper called last night! He's doing OK.
Krystal said it was so good to actually hear his voice; the sound of his voice really comforts her. :-) We are all looking forward to when he can finally come home; whenever that may be. It really helps her when they are able to talk on line, especially when she gets to see his face. And on those rare occasions that he is able to get to a phone & call... those moments are priceless! He is aware of how much it helps Krystal and tries to contact her as often as he can. Even with all he is having to do and deal with half way around the world, he's so good about checking on her. Personally, I think it helps them both when they can talk. : )
The nursing staff and Krystal's drs. ask about Casper every time she goes in for a dr. visit.
We know it will be beneficial to Krystal's health once Casper is home; but for now she is doing OK dealing with everything. We are so lucky to have such a close family; it really makes a difference having everyone around for support!

Thank you guys; you are the greatest family anyone could ever ask for!!! It is such a comfort to know that if we ever needed you, one phone call is all it would take and any one of you would be here in a matter of minutes! We love you all so much!

And TSP... thank you from the bottom of my heart! You know we love you and are oh so proud of you! As always, you and your boyz BE SAFE! TMP

I will update after her next test or sooner if there are any changes.

Please keep good thoughts and prayers going for all of our men & women who are deployed and for their safe return home!!!

Also, please keep Grandma B. in your prayers... she's having a very rough time with her emphysema right now. She really is one of the most amazing and unselfish women I know! I am truly blessed in the MIL department; ya know?! : ) We love you Pyro!!

~j~j~j~j~j~

Ren

Friday, January 7, 2005 8:29 AM CST

Hi guys,

Here's the latest... There have been no more episodes with vomiting & blood since the ER trip in the 23rd. YAY!! If you did not see/read my journal entry dated Dec. 23rd you might want to check it out; it will help you understand this entry better. : )

We went into Dr. Adamany (gastro. dr.) on Monday. He ordered a new group of tests to see if we/he can figure out this vomiting problem as it still continues.
So, Wednesday she started with the first one; a sitzmark study. I had to take Krystal in to the office and the nurse gave her this huge pill/capsule filled with these little rings (that looked like rubber bands for braces) called markers. We wait 5 days and then she gets an X-ray (Monday) of her abdomen. They will note the location of the markers that appear on the X-ray picture and count them. Based on this information, a formula can be used to calculate her bowel transit time; which is he time it takes for food to travel through the digestive tract.

Yesterday (Thursday) she had a nuclear gastric emptying test to measure how quickly food leaves the stomach. She had to eat a scrambled egg sandwich that had a radioactive "substance" mixed in it. They made her wear rubber gloves and told her not to touch the food with her bare hands or drop it on the floor... hehehe (but it was OK to put inside her body???). They then measure (for 90 minutes) the rate of emptying of the stomach with a gamma camera.

We go in next week for these results. He has also ordered a24 hour esophageal PH study & esophageal motility study. Those are scheduled for February 10th. A 24-hour esophageal pH study measures how much stomach acid backs up into the food pipe in 24 hours.
The esophageal motility study is a 30 to 45 minute procedure that measures pressure and muscle tone in the esophagus by means of a probe.

I copied this from a site for the esophageal PH study: "The nurse will spray your throat with a topical anesthetic and she will use an anesthetic lubricant on the small, flexible pH tube. The tube is 1/8 inch in diameter: about 1/3 the diameter of a pencil. This tube is gently placed into one nostril and guided into your esophagus. The end of the tube is positioned precisely 2 inches above the diaphragm, where acid sensing occurs. After the pH catheter is placed, the catheter is secured with small pieces of silk tape to the end of your nose and the side of your face. The catheter is attached to a "Walkman" type recorder that is worn on a belt, which is provided. You will not be able to bathe or shower with this catheter in place. Some patients find this catheter does not interfere with their normal activities; others find it to be annoying..." OK, crack me up... could be annoying... or could not??? Wow, now THAT'S an intelligent comment!

Anyway, this is the latest... as always, will keep you posted! : )

Latest Casper news... Krystal talked with him a couple of days ago; he's doing OK. Very tired and achy but hanging in there! He is having to carry a lot more weight than he was before.
Those weapons and ammo can be oh so heavy. : (

Casper... BE SAFE TSP! You know how very proud we all are of you and we are keeping you, TZ, Magic, and all your men in our prayers every day! We all love ya and miss ya! TMP

~j~j~j~j~j~

Ren

Thursday, December 30, 2004 10:03 PM CST

Well, Happy New Year... almost!

As people always take this time of year to "reflect" I thought I would take this time to say a little something to Krystal's girlfriends...

Krystal is so excited. Kamisha (one of her bestest friends) is coming out from Pennsylvania to visit her dad this week and she and Krystal will be able to see each other! It's been a long time since they have seen each other and they have been talking about this visit for some time... Krystal is REALLY looking forward to it!! It is an important time for them. It's kind of a "make up, put the past behind us, hang out with one of my best friends" kind of time! YAY!
Krystal really needs one of her best frinds to hang out with (in person) right now; she has had such a hard time lately with her health. This will be a good... no... a GREAT thing for both of them!! It's an essential healing & re-bonding time for Krystal and Kamisha.

I'm glad Krystal has a few good friends she can count on! Jenna, Brianna Kamisha, and Katie... you girls are the best! Thank you girls!!

Jenna,
Thank you for ALWAYS being there for Krystal... you are awesome! The way you will show up and just lay around and hang out with her, and when she was in the hospital... dude... you guys REALLY got into those coloring books! Now THAT was awesome! Girl... YOU ROCK!

Brianna,
You are so far away but you manage to keep in contact, checking in on Krystal; seeing how she is feeling... you have been such a good friend since 4th grade! Thank you!

Kamisha,
You two have been really good friends since high school. Krystal showed you what a good friend and person she is a couple of years ago and now, with you coming to visit... I think you two are back on track! Right on girl!!

Katie,
No one can understand or relate to Krystal and what she deals with on a daily basis more than you!!! Having Addison's can be hard enough to live/deal with; but when you add in the other health issues you both deal with, it amazes me the positive attitude you both have! I would not wish Addison's Disease on anyone, but I thank God every day that He brought you and Krystal together!!! Even though you are in another state, I know your daily talks and chats are helpful to both of you.
Thank you... not only for the "Addison's advise" you continual give and help Krystal with, but thank you for being such a good friend and for helping Krystal through this difficult time while Casper is gone. I know Casper is as thankful as I am that Krystal has you!!
You you are always in my prayers. I wish from the bottom of my heart that I could heal you both!! Hun, you know I am here for you any time you need; 24/7! Love you Katie!

Girls... you know I love you all and I thank you each for being such a good friend to Krystal and for being such caring people.

~j~j~j~j~j~

TMP

Saturday, December 25, 2004 2:43 PM CST

Merry Christmas!!!

I hope everyone is having a wonderful day! Krystal is feeling better today. YAY!!! She slept from about 2pm yesterday afternoon until the phone rang at 5:25am this morning. Yes, it was a Christmas call from Iraq. : ) Casper sounded very good and said he is doing well... Another YAY!!! It was raining there; well, pouring. Krystal said she could hear the rain in the background. They were able to talk for about 5 - 10 minutes.

He finally received packages we sent almost a month ago. Now, with the holidays about over, mail will hopefully start getting there a bit faster. We mailed all the boxes to the marines from my school kids yesterday; 50 boxes and 15 large envelopes. It took 2 postal clerks 2 hours to process all of our boxes. They didn't mind at all. They all thought it was awesome that we were mailing stuff to the guys.

Well, I'm going back to bed... I have a terrible cold. I didn't even make it to Neen & Frank's yesterday. In fact Krystal and I stayed home and slept while Candice and Chuck went there. We were bummed but I just couldn't make it... there's always next year. : )

Merry Christmas!!!

~j~j~j~j~j~

Ren

Thursday, December 23, 2004 0:26 AM CST

OK, round two I guess...

Krystal has been vomiting on and off since she was released from the hospital Nov. 4th. She has been having trouble keeping anything down; can't even keep water down. It is very sporadic; not any certain food that causes it. She had not been loosing the weight she gained from the extra steroids but the drs. were glad & did not want her dropping weight with all the vomiting.
Well, Monday night she started vomiting really badly for over 2 hours straight and there was blood in it. Gastro. said to take her in so we did. They had to hit her 3 times before they could start her IV and then twice to get the blood draw. THEN, they came back cuz the blood hemolized when they drew it so they had to draw it all over again! ARG!!! 3 hours later they sent her home saying her gastro. said to see him the next morning.

So, Tuesday morning after 3 phone attempts I finally got a hold of the gastro's nurse and she said the ER dr. was supposed to have admitted Krystal the night before; that the dr. did not want her to go home. I told her that the ER dr. said her gastro. (Donner) said to send her home. I swear, the right hand did not know what the left was doing!! So, the nurse said to take her back and have her admitted... OK... ???????

Well, after MULTIPLE phone calls and discussions with 3 different drs. I decided to change gastro. drs. mid-stream!!! New dr. & new hospital. Well, actually, she's been to this dr. before & to Mission Hospital too. We went back to the gastro. we really like; Dr. Adamany. She had gone to Donner cuz he's who she saw when she was in the hospital with the C Diff.

Anyway, Dr. Adamany (new dr.) was very surprised that they had not given Krystal anything for the stomach, etc. the night before so he started her on yet another med. The vomiting slowed down yesterday & no more blood so they think maybe she slightly ripped/tore her esophagus from so much vomiting over the past month and that is what the blood was from.
The new med. is Nexium. So far , so good. No vomiting today!!!!!!!!!! Woo hoo baby!!!!! She's not feeling well though; slight fever, drained and tired; and she's dropped 10 pounds since Sunday so that's draining her too. We are keeping her pretty medicated on phenergan (anti-nausea med.) and it makes her tired but it works! The drs. try really hard to keep her out of hospital whenever possible as she seems to "acquire" more problems when she's in there. So, if we can keep the vomiting under control she won't have to spend Christmas in the hospital. But if she does... hey, no biggie!! : )

Krystal talked with Casper on-line Sunday. She has not talked with him on the phone in a while. He and his squad are "hanging out" in town... yeah, that's it... hanging out... riiiiiiiight... Anyway, hopefully, he will be back in camp this weekend so she'll get to talk with him. Who knows, with it being Christmas and all, maybe he'll even get to call!! But if not, she loves being able to talk with him on line; especially if he has web cam available. She always relaxes so much more once she has talked with Casper and knows he's OK.

We are mailing out boxes to marines tomorrow; we have close to 40 boxes to mail!!! The guys at the post office love us! Kids, parents, & staff donated items and money for the marines. I bought a few things the guys asked for and the rest of the cash goes for postage. 40 boxes at $8.00 a box... hmmm; think I'm going to be at the post office a while. Oh well, it's all good! It's for a good reason!

Well, sorry this turned out to be so long... but believe it or not, this is actually the short version of how the week has been going. : )

Talk to ya soon!

Love,
Ren

Casper,
TSP... you BE SAFE!! And tell TBP (TZ) and my dirty dozen to be safe also!!!!!
Love ya! TMP

Wednesday, December 15, 2004 10:37 PM CST

Well, we were back into the endo. Monday. Krystal has been continually throwing up since last Thursday and is having a very rough time. He ordered more blood tests so when we left his office at 6pm he sent her directly to the lab; 10 vials this time! She needs to go in for a nuclear food clearing test of some sort now too.

Her stress levels are rather high, which you all know can quite easily end her up back in the hospital. I guess Addison's is kind of the epitome of the saying stress can kill you. Hmmm..... kind of weird when you think about it.
She is so very worried about Casper; his company has lost 9 men to date; 6 in the past week alone. We have cried for these men and their families many times over the past 6 days. It is so very difficult. When we hear and read that he/they are literally in the city it just tears you up inside. We received a letter today from one of the guys who was KIA last week... it is just so sad. I am going to try and get the letter to his mom.
Krystal found a "mom & dad" board she visits for family members of 3/5 and it really helps her a lot. The people there are amazingly supportive of one another!

As always, please keep Casper and all of the men of 3/5 in your prayers!

Casper... BE SAFE!!!!
You know we all are so proud of you and support you 150 percent!!!!
We love ya hun! TMP

Well, I can hear Krystal throwing up so I better go check on her.

Will update when I have any new news.

Ren

Friday, November 26, 2004 7:33 PM CST

Latest ultrasound showed an area in Krystal's upper left arm that is having a blood flow "problem" so she was sent to a vascular specialist/surgeon; Dr. William Wallace. He ordered labs to see if there's any blood clotting problems gong on and is going to monitor her for 3 months and then repeat the ultrasound. He thinks this problem will resolve itself but is going to take time. YAY!! Happy daaaaaaance, happy daaaaaance, happy daaaaance!!! More YAY!!! Ohhhh... and a Woo-woo baby!!!! : )

She's still feeling pretty crappy. This dr. told said the same as the others... it's going to take quite a while for her to feel "good."

We went shopping today so she could finish her Christmas shopping for Casper. We are mailing Christmas gifts to Iraq tomorrow for Casper & 11 other guys who we are affectionately calling our "dirty dozen." : ) Casper said he would pick out some guys for our dirty dozen group. We are sending mostly "needed" items but there are a couple of fun things too! We are also mailing boxes for another 16 marines who sent letters to kids from my school. OMG, I think we have 15 to 20 boxes to mail!!!! We know they probably won't get there in time for Christmas; but we can try!!!
Krystal has not heard from Casper since the 17th. Please keep him, everyone from Kilo 3/5, and all of the guys in Fallujah in your prayers!

Casper, as always... BE SAFE! TMP

We hope everyone had an enjoyable Thanksgiving Day!!!

~j~j~j~j~j~

Ren

Dec. 6, 2004:
Mini update... Krystal has been doing OK. She was nauseous and a little pukey in the middle of the night Sat./Sun. morning. She is still having a bit of pain in her arm if she tries to do much of anything so she is really having to be careful. She is spending most of her time writing letters to Casper, reading incoming letters from marines, and sorting up care package items to send them. We are making another "post office" run today and expect to do the same on Thursday or Friday. The temp. drops into the 20's and 30's during night in Fallujah now; so we are sending hand warmers they can put in their gloves during the night. If anyone has items to send over, please email me and I will make arrangements to get them from you. We are now trying to buy everything in "trial sizes" so we have more items for more marines. And now that it is cooler we can send candy and cookies! We are making cookies this week to send.
Aunt Bobbie... thank you sooooo much for the stuff you left at Grandma B's house; the guys will appreciate it all so much!
Grandma B... thank you so much for the sewing/mending items! You girls ROCK!!!!!
Krystal was able to talk (on the actual phone!!!) with Casper Saturday night! YAY!!!!! He's doing OK. That's what he tells her... like he would tell her any different even if he wasn't?! : )

As always, please keep Casper and all the guys in Fallujah in your prayers!!!!

And please keep Nick Snow and his family in your prayers. Nick has had a long battle with cancer and added Addison's to his list of medical conditions a couple of years ago!
For the first time in 9 years Nick is "officially" cancer free"!! Woo hoo baby!!! You can view/read Nick's page at:

http://www2.caringbridge.org/ca/nicksnow/index.htm

~j~j~j~j~j~

Ren

Saturday, November 20, 2004 11:10 AM CST

Sorry it's been so long since updating, our internet has been up & down; mostly down. And sorry, but this is going to be long in order to accurately update the events of this past week; so I am going to do this in chronological order for simplicity sake...

Friday night, Nov. 12th:
We noticed a vein in Krystal's arm looked kind of bruised. By Sunday night it was worse.

Monday, Nov. 15th:
Went into endo and he suspected a blood clot from the IV's that infiltrated. They said usually blood clots happen/show up much quicker than this. But then again, we all know that my girl is NOT your typical or "usual" person. : ) The vein has formed what they call a "cord;" which is basically the vein is hardened. He ordered a STAT Doppler ultrasound. While the tech was doing the ultrasound he told her to let him know if he pushed too hard on her arm and hurt her. Krystal, in her AMAZINGLY always positive attitude responded with, 'Hey, I look at it as I'm getting a free neck and arm massage." : )

They found 3 blood clots in her left arm. She has 2 clots that are totally occlusive in the lower arm and 1 in the upper arm that is partial. The good news is they are subcutaneous; right under the skin. YAY! If they were in deep veins it would be much worse. We have been hot packing her arm, she's taking aspirin to thin the blood and drinking lots of water. He ordered some STAT labs also.

Thursday, Nov. 18th:
Back to the gastro. for the 2 week follow up after hospital discharge. All went well. Krystal told him the Zelnorm is REALLY helping & that she hasn't felt this good, gastro-wise, in almost 3 years. YAY!!! So, he's keeping her on it and he said if it stops helping there is a brand new drug out he will put her on; it starts with an "X" but I don't remember the name of it right now. He gave her a list of foods to eat and avoid which will be very helpful! Some of the foods that totally seemed like they would be OK are on the major do NOT eat list.
He is starting her on a new (less expensive) pro-biotic called "Flora Q." More YAY!!! Ohhhh... and even a Woo-hoo!!!! : )

Friday, Nov. 19th:
Back to the endo. to recheck blood clots. Her arm is the same. He ordered a follow up re-check Doppler for Monday to see if the clots have moved, or changed in size at all. Also, ordered a Doppler of the right arm (the arm she had the picc line in) to rule out any clots there. Debating sending her to a hematologist.

Got the labs back; potassium is in range but dropped again to the low end so he's upping her potassium again.

Also got back the last of the labs he had ordered while she was in the hospital; they were send outs so they took a while to get the results back.
Her IgG was kind of low and her IgA & IgM were in range but at the low end.

IgG was 610 range is 768 - 1632
IgA was 070 range is 68 - 378
IgM was 098 range is 98 60 - 263

IgG; Immunoglobulin G: The major antibody found in the blood that can enter tissues. It coats germs, helping other cells to seek and destroy them. It is the main antibody defense against bacteria.

IgA; Immunoglobulin A: A type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract.

IgM; Immunoglobulin M: An antibody that remains in the bloodstream where it can kill bacteria that enter the blood stream. It is the main antibody involved in fighting blood infections and triggering production of IgG.

Dr. Fernandez is going to talk with an immunologist named Dr. Sugar, not sure of the spelling but that's how you say his name, : ) about Krystal and will call me. He made sure he had my work, home and cell numbers so he could get a hold of me after he talks with Dr. S. We are hoping the IgG, etc. are low because of her recent infection/illness.

She is still having the night time clammy/sweating thing going on. That's been ongoing for months though. Also, she still has the weight gain from the increased steroids while in the hospital. We all know that the weight will go back down; it always does... but it takes times! The weight gain is the one thing that really bothers her more than anything. She keeps saying she wants to "looking good" for Casper... I keep telling her not to stress over it and just focus on "feeling" better because the weight will come off. And Casper keeps telling her she looks good to him. He really is a very supportive boyfriend! She writes him every day & keeps saying he is going to get tired of receiving so many letters from her. : ) I think they are lucky to have each other. Can't tell I like him; can ya... ; )
Krystal heard from Casper this week; he's OK. WOO WOO BABY!!!!!!!!!!!!!!!!!!!!! He continually tells her not to worry about him that he's OK; but of course, she will worry until he's back home!
Please keep Casper, the guys of 3/5 Kilo Co., and all of the guys in Fallujah in your prayers... they have been through a lot... actually, way too much... in the last few weeks!!!
~j~j~j~j~j~

Candice is hoping Krystal feels better before her birthday; she wants to take her to the Stampede (fav. country dancing place). Candice went there last night. I guess they do a certain "thing" where all the marines and/or their girlfriends go out on the dance floor for a certain "boot in your ass" Toby Keith song and a bit o patriotic music; I love it!! Candice told Krystal she went out on the floor for Casper!
That's my girl!!! : )

Will update after the ultrasounds on Monday...

Ren

And Casper, as always... BE SAFE!
TMP

Sunday, November 7, 2004 11:15 AM CST

Well, I am finally getting around to updating this. Sorry... been a bit tired these last few days! : )

Krystal came home Thursday, Nov. 4th! YAY!!! She gets rather drained quite easily, but that's to be expected. She wants to just go, go, go, but can't and that's frustrating for her. The mind id willing but the body is not yet able. : ) It's going to take time.

We made a trip to the post office yesterday (we were only there about 15 minutes) to mail Casper a box and that pretty much wore her out. I told her I would go mail it for her, but she really wants to be the one mailing his things over. We came home and watched a video and rested after that; "White Chicks"... funny movie! : )

They removed the picc line before she left the hospital because the inflammation/phlebitis was just getting worse. They had hoped to leave it in for a few months for lab draws, etc. as her arms/veins are shot right now from all the draws and IV's blowing while she was in the hospital; but decided it better to remove it. Marge (no guys, I'm not loosing it and calling mom by her first name... this Marge is my friend in Chicago; her son Nick has Addison's) reminded me of another "Addisonian" who had problems with their picc line but I have not had a chance to research it yet.

I have now talked with 3 other people who have had C Diff. My girlfriend Gail had it in the Spring and was quite ill with it also! This stuff is scary! Krystal finishes up the Vancomycin (antibiotic) tomorrow. Keep your fingers crossed that the C Diff. does not come back! Finally, all seems to be on track with all of this.
Oh, and for those of you who had asked... the C Diff. is not related to, caused from, or has anything to do with her Addison's. It is related to the antibiotic (Cipro) she was on in September. Anyone can become afflicted/infected with this bacterium...

Thank you all again for ALL of the prayers and support we have had throughout this ordeal!!! Everyone has been awesome!!!!!

Dave, thank you for the continual calls checking up on Krystal and for the continued prayers!

April, thanks so much for the call at the hospital!

Everyone at HL and HO... thank you so much for all the emails and words of wisdom!!

YOU GUYS ROCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ren

PS: Some of you asked me what a picc line is. Here are 2 web sites that describe it.

http://health.discovery.com/encyclopedias/3017.html

http://www.cancerbacup.org.uk/Site/QAs/569

Wednesday, November 3, 2004 7:55 PM CST

She's still in... :( Dr. came by a little while ago and said MAYBE tomorrow if they can get the nausea under control and take care of a couple of other things; but he's not holding his breath.

Thought she was going to come home today but she now has "mechanical phlebitis" in her arm where the picc line is. Basically, the catheter is irritating the vein. They are hot packing it for 24 hours. She is also running a slight fever and her pulse is running between 100 - 118. So, if they can get all of this straightened out by tomorrow, she'll come home.

Her attitude and spirit are wonderful!!! She spends her time drawing, coloring (her favorite is a "Casper" coloring book from everyone at my school) and writing letters to Casper. : )

OHHHHHHH!!!! She got to vote yesterday!!! YAY!!!!!
She was soooooooooooo happy!!!! They had a way of doing emergency absentee voting through the hospital.

Marge, thanks so much for the call (now THAT... was awesome) and the flowers! She received them this afternoon after you had called!

Ann, OMG Girl!!! YOU ROCK!!! She is totally loving the bear in cammies, the Casper in cammies, Casper vehicle, etc... and oh yes, we can not forget the candy and especially the SALT LICK!!! YOU CRACK US UP!!! Sooo, when do we leave for Iraq??? We gonna go for the right one or the left one? Heeheehee....

Doris, thanks for the web site. I printed out some of the info.!

Krystal asked that I say thank you to EVERYONE who has posted on the boards, signed her web page, sent emails, and sent gifts, flowers and care packages. I print out the emails and posts and take them to the hospital for her to read. : )

OK, need to get back to the hospital. IF there are any typos here... oh well! Just a bit tired tonight!

Keep your fingers crossed that tomorrow will be her "coming out" day from the hospital... : )

Ren

FRIDAY 11/5/04:
KRYSTAL IS HOME!!! YAY!!! She came home yesterday afternoon. They removed the picc line before she came home; the inflammation/phlebitis was getting worse. I will update more later; way too tired and way too to much to get done around the house right now.
Ren

Tuesday, November 2, 2004 7:08 AM CST

Krystal is back in the hospital; started vomiting again yesterday. She is at Saddleback.
They are going to start a picc (sp.?) line on her today and run her IV through that. They will also be able to draw any blood they need through that so they don't have to keep poking her as they had to "re-do" her IV 4 times last week because it/they kept infiltrating. Her poor arms are so swollen and sore.

I really don't know much at this point but will let you all know what's going on as soon as I do. The endo. and gastro. drs. are working together very closely on all of this.
The gastro. is starting her on Zelnorm; a new drug for the IBS stuff. He really thinks it will help her.

Casper, if you call tell the nurses where you are calling from (basically, same protocol as last week) and the nurses will put your call through. Candice emailed you Krystal's new number at the hospital. TMP

Marge & Marti... thank you for all your help and for posting for me! YOU GIRLS ROCK !!!!

Karen & Robin... DITTO... YOU ROCK!!! Thank you soooo much!!!!

Joni (both of you), Corey, Deanna, Kathy... and EVERYONE at work... words can not begin to express how much all of your help and support means to us!!!!
Thank you from the bottom of my heart!!!!!

Ren
PS: Coffee is our friend!!!!!! : )
PSS: Krystal's biggest concern right now is that she really wants to vote today!!! : )

Sunday, October 31, 2004 8:32 AM CST

Krystal is home!!! YAY!!! Still not feeling well, but she's home. I realize that this is going to take a while. The drs. said as long as she's not vomiting or having diarrhea she could come home as I can take care of her just as well here. She is not feeling too well right now; says she hurts everywhere.
Arwen (Krystal's dog; black lab mix) is so glad to have her mommy home. She's her "Bobo" dog... well, unless Casper walks in the house then it's all about daddy. Arwen even writes Casper letters in Iraq.

The gastro. dr. came in Friday afternoon. He switched Krystal to the vancomycin. They gave her 4 doses before letting her come home yesterday afternoon. If the vomiting, diarrhea, or fever return I have to take her back in. I had a hard time filling the rx. for the vanco.; the first 2 pharmacies I tried did not have it.

Candice was amazing while Krystal was in the hospital. She worked all day, would then come to the hospital for an hour of "sister" time ( they would eat dinner together and then sit and color together when Krystal was up to it) and then she was off to school until 11:00pm every night. She is going to school to be a massage therapist. So far on her first two tests she has scored 90 on both tests! YAY Candice!!!! Keep it up girl! We are SOOOOOOOO proud of you!!!!

I am now going to make an attempt to get the house cleaned. Oh how I wish I had a maid right now : ) and oh how I wish Star Buck's delivered!!! : ) Probably just as well they don't; I would go broke!!! I don't think my traditional 2 Venti Hazelnut Latte's would suffice. Yesterday from the time we walked in the door until Candice and I were done running around picking up rx. and what not (about 3 hours total time) Candice and I "shared" 6 Rock Stars and I drank 2 or 3 Pepsi's. Can anyone say caffeine over-drive!
I think I am safe to say that the tiredness has set in... No worries though, I am peachy this morning; I have Chuck's coffee! He puts probably 10 - 12 tablespoons of coffee grounds in it. Now that'll keep me going... get urrr doooone!!!!!

I left school (work) last Monday to take Krystal to the ER and have been out since then. I feel so badly for not being able to be there as I know others are having to do my job and they are all so busy already. Everyone there has been so amazing though. I have some very good friends!! I truly work with the best group of people. Thank you all!!!

Thank you to everyone who sent emails and posted on the Addison's boards. You guys are my rock! Karen M.... thank you for your info. I am printing it out and going to talk with the gastro. about it. And no, I'm not talking/typing to myself... I may be tired, but not so tired as to type to myself. However, I have been known to do this... : )
This Karen M. is an Addison's friend who lives in another state. : ) Also, thank you Robin for all of your info.! What a plethora of knowledge you are! : )

Thank you to all, for the prayers for Neen (sis) while she was in the hospital week before last. Hers was good news; her cancer has NOT returned!!! YAY!! But her gastro. problems continue... NOT YAY. : (

Thank you also for the continued prayers for my girlfriend Gail. Her cancer treatments continue. She is without a doubt one of the strongest women I know; and such a GREAT person & mom!!!

Please continue to keep Krystal (and as always, Casper) in your prayers.

OK, time to "drug the baby"... heeheehee : )

Ren

Friday, October 29, 2004 11:11 AM CDT

Doc was in this morning. Krystal's not feeling any better so he's having a gastro. dr. come in to see her this afternoon and decide if they want to try Vancomyicin; the other antibiotic. He said it could be taking longer for everything to work because of her Addison's and other health issues she's dealing with; makes sense. I know when she even gets a cold it takes her longer to recover. Hmmm... maybe she'll go home tomorrow!????
So, check it out... on Monday in the ER they started an IV; left hand, just above her wrist. Had to change it Monday night cuz the area was turning red. Moved it up to just below the bend of her arm.
Tuesday the 2nd IV infiltrated the vein; so they had to take it out and start a new one on her right arm just below the bend of her arm..
Thursday the 3rd IV infiltrated the vein, so they had to move it again. So, so far she has had 4 IV's, labs drawn 9 times (one of which the 1st tech couldn't get enough blood so another nurse had to come back and do it again) and a blood culture where they draw out of both arms for the same test. I think they hit a vein on the first try only 3 times so far!! ARG!!!!

Thank you to everyone who has emailed or posted a message to Krystal on this page. I am going to print them out and take them to her at the hospital.

We put pictures up on the wall in her hospital room of her and Casper. Everyone who walks in looks at them and immediately comments, "Oh, we heard about the call all the way from Iraq."
They even have a note posted by the phones, in case he calls again, to put him through to her. They want to make sure if someone answers the phone who normally doesn't, that she will get the call. They are being so nice about that!: )
And a special thank you for all the prayers! Cuz ya know how much I believe in the power of prayer!!

OK, back to the hospital now... : )

Love you all!

~j~j~j~j~j~

Ren
PS: Those of you who have not read anything this week... please read the journal history to see what all's going on. : )

Thursday, October 28, 2004 2:38 PM CDT

OK, real quick cuz I'm so tired but need to get back to the hospital...

Krystal does NOT have the flu... she tested positive for C Diff (Clostridium difficile toxin). Basically, it's from the antibiotic Cipro that they gave her a few weeks back to kill the bacterial overgrowth she had. This new bacteria grew and is releasing toxins in her body; basically poisoning her. She is in isolation at the hospital. She is having a very rough time with the vomiting and diarrhea. I was told there are only 2 kinds of antibiotics that can kill the C diff. bacteria. They have her on Flagyl 250mg. 4 times a day. We have not seen any improvement yet but the dr. said she should be feeling better by tomorrow... say a prayer! : ) If not, he is calling in another doctor.

She is so very weak and drained and tired. I feel so badly for her!

Need to run.

Ren

Oh!!!!...
The night nurses were awesome night before last... Candice was able to get a message to Casper that Krystal was in the hospital. He was able to get a phone and call Krystal; and they put the call through to her room at 12:30AM!!!!! It really made her day.

Casper, thank you!!! You are such a good person... and a great boyfriend! : )

BE SAFE!!!!!

~j~j~j~j~j~

TMP

Tuesday, October 26, 2004 8:21 AM CDT

Krystal was admitted to the hospital yesterday.

Here's the basics... might be the flu but not sure yet. She had 103 fever, vomiting, diarrhea, BP 93/38, elevated white count, & low glucose count and her oxygen level was only at 60%. They put her on oxygen, drew 5 vials of blood, took a chest X-ray and then drew 2 HUGE vials (one from each arm) for a blood culture to check for a bacterial infection. That test takes 48 hours to get back the results.

Last night even after giving her 200mg. solucortef the vomiting and diarrhea continued. She was having a rough time so they gave her fenergan and it helped.

I just spoke with her nurse at 6AM this morning and she said she did well through the night; fever is down, temp is almost back to normal. No vomiting or diarrhea through the night (because they gave her fenergan) & she slept most of the night. They are rechecking her labs again this morning to see what her white count is. The dr. said if the white count is down today and no more vomiting, etc... she can come home; if not then she stays and we go from there. Keep your fingers crossed!!!

They only allow phone calls until 9PM but I explained that Casper is in Iraq and is very limited on when he can contact Krystal. They said if he should call, they will put the call through to her any time day or night... now how cool is that of them?!! More than likely he won't be able to but I thought that it was pretty nice of them to say that!!!

OK, need to get back to the hospital. Will update this afternoon...

Casper, read Peep's IM msg. that Smiley put up for you. You can try calling my cell but I have to turn it off while I'm in her room. TMP

Please keep Krystal (and Casper) in your prayers!

Thank you!!

~j~j~j~j~j~

Ren

Monday, October 18, 2004 9:23 AM CDT

We went into the gastro. & got the results of the EGD; negative. So, no Celiac Disease! YAY!!! The dr. told her to stop taking the Bentyl; said it may be contributing to her intestinal problem as it actually slows down the digestion process. 2 less pills a day... again YAY! She started the probiotics (good bacteria), it smells and looks like yeast. NOT YAY!!! However, her acid reflux has started again so don't know if that's from stopping the Bentyl or a coincidence of timing. We will give it a few days and if it continues I'll call the gastro. and see what he says.

She goes back into the neurologist tomorrow for her migraines. He had her up to 100mg. propranolol, taking it 3 times a day (40, 40, and 20) but she backed it down to 80mg. (40 & 40) because when she took the dose at night she was not feeling well. And for the life of me (and her) neither one of us can remember what the problem was at night. We are such dorks!
Casper... do you remember what it was????? Guess we've had a few too many things on the brain lately.

Krystal's endo. said he wants her to get the flu shot this year which blew us out of the water. He has always said no because of her combination of health issues. But this year he wants her to have it. Of course he does... the one time it's no where to be found! ARG!!!!

The 8th grade kids at my school wrote letters to about 50 marines in Iraq. One of the teachers and I wrote "generic" letters that we are sending to all of the guys along with a questionnaire that we hope they will send back. We figured it was the quickest, easiest way for them to respond if they have time. : ) Krystal has been sitting all night addressing and stuffing envelopes with letters to ALL of the marines of 3/5 Kilo company; 160 of them!!! What a good girlfriend she is! : ) She was able to talk with Casper last night. I was laying in bed and heard the computer "moo." It's the funniest damn thing; she has it set so when Casper signs on, the computer moos. That way if she's in her room, she can hear that he's on line so she won't miss a chance of talking with him. It sure makes her day when she can talk with and sometimes see him; plus, then she knows he's OK. And when she's feeling like crap it really helps her to be able to talk with him for a while. She never asks him about what's going on over there cuz she doesn't want to put him in a situation; and he probably can't say anyway. She knows he will tell her what he can, when he can.
She's counting down the time till she has her Casper pillow : ) back. She can tell you in months, weeks, days...

Casper... as always, BE SAFE!!! TMP

PLEASE keep Casper and all of our men and women in your prayers!!

~j~j~j~j~j~

Ren

Wednesday 10/20/04: Went to the neurologist yesterday. He's keeping her on 80mg. of propranolol. He also gave her an rx. for Maxalt. Last time we were in, he gave her samples of it to try, and it seemed to work pretty good. I guess it's kind of pricey. He said usually the insurance company will only allow 6 or 9 (can't remember which) pills a month and if we want more we have to pay for it out of our pocket! Geez! Oh well, if it takes the headaches away... then that's the route we go. : ) Actually, we are lucky, Maxalt is one of only 3 "triptan" drugs that is on the list of meds. that insurance will cover. YAY! So, we will get the 9 and hope that's all she needs.
She goes back in 6 weeks for a recheck.

Wow... I checked Costco for the Maxalt... 30 pill costs $453.00!

Monday, October 11, 2004 8:36 AM CDT

Still no word on the EGD results. I will, once again, attempt to get these today.
Krystal has a really bad cold right now so is not feeling too well; she got sick Saturday night. We doubled her steroids this weekend and it seems to have helped.
Thought we were going to have to take her in Saturday night. After she ate, she vomited profusely 5 or 6 times. If the vomiting had continued any longer, we would have had to of gone in; probably should have then, but she was able to keep the steroids down so we decided to wait.
Candice, as she always does, kept checking on her. She asked if she could get her anything and all Krystal wanted was her "Casper pillow." : )
Soooooooo... yesterday Candice got her a bouquet of Star Gazer Lilies (because they are her favorite & to remind her of the flowers Casper had sent) and a new stuffed caterpillar (stuffed with little foam balls). It is so cool! They named it Inchy VonWormBert... I'll explain the name some other time. : )

We went and visited Nemo Saturday (B/4 Krystal got sick) at the Naval hospital in San Diego. He is doing pretty good. He has already had 6 surgeries on his arm and has more to go. They had to put a pin in because he is missing about an inch of bone... it's somewhere in Iraq. He also has major damage to 6 tendons. He has a long road to recovery ahead of him!

Casper was able to call (on the phone!) last Wednesday morning and talk with Krystal for a couple of minutes. That was totally cool! He really can't say anything about where he's at or what's going on but they talk about other stuff... which is cool.

Casper... BE SAFE!!! TMP

PLEASE keep Casper and all of our men and women in your prayers!!

~j~j~j~j~j~

Ren

Friday, October 1, 2004 0:43 AM CDT

Today was the endoscopy. It went pretty well as far as the procedure itself goes. They found loose lower esophageal sphincter, consistent with GERD.
Pronunciation: (LOH-wur uh-saw-fuh-JEE-ul SFEENK-tur)
The muscle between the esophagus and stomach. When a person swallows, this muscle relaxes to let food pass from the esophagus to the stomach. It stays closed at other times to keep stomach contents from flowing back into the esophagus.
Gastroesophageal Reflux Disease (GERD)
Pronunciation: (GAH-stroh-eh-SAW-fuh-JEE-ul REE-fluks duh-zeez)
Flow of the stomach's contents back up into the esophagus. Happens when the muscle between the esophagus and the stomach (the lower esophageal sphincter) is weak or relaxes when it shouldn't. May cause esophagitis. Also called esophageal reflux or reflux

The dr. took some biopsies and we should have those results in 4 days. We got the results of the hydrogen breath test and Krystal does have SIBO (small intestine bacteria over growth). Sooooo, once again, she will start antibiotics (Cipro) for 10 days and then she will need to go on probiotics (good bacteria) to fight the bad bacteria.
The dr. is having her start VSL#3. Here's what the info. pamphlet says about it:
"VSL#3(TM) is a patented probiotic preparation of eight live freeze-dried lactic acid bacterial species. VSL#3 contains significantly greater concentration of live bacteria (at least 3x10 (11) viable cells/gm) than traditional probiotic preparations and contains several bacterial species as compared to traditional probiotic preparations, which usually contain no more than 2 or 3 bacterial species. VSL#3 contains 4 strains of lactobacilli, 3 strains of bifidobacteria and 1 strain of Streptococcus salivarius."

The dr's. office gave me a web site that I can purchase the VSL through; he said it's the cheapest place they know of to purchase it. The company will Fed-ex it to us frozen/cold. It looks like it will run about $150 a month. It's not covered by insurance as it is considered a "dietary supplement." The dr. said it most likely will be a "long term" treatment, but if it work that's fine!!!! : )

Will let you all know when we get the biopsy results!

Casper update: Peeps finally talked with Casper last night. It really does her wonders when she gets a chance to talk with him. He is OK, but "working" looooooong hours. They have been there almost 3 weeks and already Nemo (Tony) was injured and is coming home tomorrow. :( Thank God he's going to be OK! We sure wish Casper was coming home tomorrow. It is unbelievable how much the worry consumes you at times!
Casper... BE SAFE!!!!! TMP!

OK.... I am too tired right now to continue. Will keep you all posted! : )

~j~j~j~j~j~

Ren

Sunday night: Krystal is not feeling well at all!!! Her lower back is hurting. We are hpoing it's not her kidneys!!!!! She has a low fever, drained, and the back pain... : ( not a good thing!
CNN is having a special on presidents and their health issues... they will be having a bit on Kennedy. I know you are all aware he had Addison's! Hope you caught the special!

Thursday morning: The back pain is gone; YAY!!! She's been doing OK since Tuesday night; just very tired. Casper called yesterday morning so it totally made her day! : )
Ren

Saturday, September 25, 2004 4:36 AM CDT

We went to the new gastro. dr. Thursday and Krystal REALLY liked him! YEA!!! One of the first questions he asked her when she explained her "problems" and how long she had been dealing with them was, "And were you told you would just have to deal with it and learn to live with it?" She told him , "Yep!" His reply was basically that he doesn't work that way and he will do everything he can to figure out what's gong on now and find a way to help her feel better!! Again, we say... YEA!!!!!!!!!!!

He ordered labs, is sending her for a hydrogen breath test (in LA... yuck! but oh well) next Tuesday and next Thursday he is doing an endoscopy. One of the things he said he is checking for is bacteria in her intestines. There is an "outpatient" type surgery office connected to the gastro. office so she won't have to go to the hospital to have the endoscopy done. And yet another... "YEA!!!!"

She's not feeling too well so I hope they figure out something quickly. The headaches continue and the weight gain is REALLY bothering her. She's so cute; she says she doesn't want to look "bad" for Casper but doesn't care what anyone else thinks. : ) I honestly don't think she could look bad in his eyes... : )

The last time Peeps heard from Casper he was very busy, "working" 16 hours a day so he doesn't have much down time to contact anyone. Please continue to keep him and all the guys/girls over there in your prayers!

Casper... BE SAFE!!!!! : ) TMP

~j~j~j~j~j~

Ren

MIni update: Wed. 9/29/04: One down, one to go. She did the hydrogen breath test yesterday; we will get the results today. No problems with the test itself but as she was not to drink anything after midnight the night before (not even water) she was not feeling too well towards the end of the test. Tomorrow is the endoscopy... in Mission Viejo; no more driving to LA.... LA (or at least the part we were in) sucked!! No other way to put it. : )

Saturday, September 18, 2004 10:57 PM CDT

Hi guys!

Well, been a long week. Went to the endo. Monday to get lab results; he said everything looked pretty good.
He's referring her to a new gastrointerologist for the pain, bloating, gas, etc. that she's been having.
She has an apt. with the new guy next Thurs. 9/23; hopefully he can help! She is really bloated, bad gas (no matter what she eats) and hungry ALL the time.

She was doing pretty good most of the week and then late Thursday night she got sick. She was not feeling well at all and started in with the vomiting, etc. We almost took her into the ER that night. We debated but she said she just wanted to lay down and try and sleep. So, she laid in her room all bundled up in Casper's "Fox" sweatshirt and fell asleep. She said if that happens again I should take her in cuz she was feeling pretty bad. She's feeling much better today.

On a brighter note... Casper had flowers delivered here Monday for her (2 days after he left). She was sooooooo surprised; it was very cool!!! They are beautiful. It is a HUGE pink & white bouquet of lilies, gerbera daisies, etc. It has bright pink Star Gazer lilies in it too; they are her favorite. She put a couple pics. of them on the photo page; check it out!

Today marks one week of Casper being gone. She misses him so much (obviously) but says he's worth waiting for and she will wait as long as necessary. My baby is growing up! My TLC has begun it's transformation as well; we now have 3... yes 3! "Marine stickers" on the back window. Imagine that... me who hates refrigerator magnets and stickers; and now I have 3. I actually don't mind them though and Krystal loves them! It's the simple things in life that make each day a little bit easier to handle; ya know?! : ) She was able to talk with Casper on line and it made her day; I think it made his also! : )

Will let you all know how the gastro. apt. goes Thursday! Think good thoughts and please, as always, keep Casper and all of the guy in your prayers!

~j~j~j~j~j~

Ren

Saturday, September 11, 2004 11:27 PM CDT

Today was not an easy one. Casper left for Iraq; for the second time. We were able to go to base to see him off. It was rather hot and draining but Krystal made it through with an extra 20mg. Cortef. She started with an extra 10 but needed more.

Her endo. apt. is Monday so we will go over lab results.
She needs to go back into her gastro. too as she is having a lot of "stomach" problems.

Grandma B. is home from the hospital. Thanks for all the good thoughts and prayers.

Please keep all of our guys and girls in Iraq in your prayers!!!!!

~j~j~j~j~j~

Ren

Friday, September 3, 2004 0:22 AM CDT

OMG!!! : ) What a great week; no vomiting! Woo woo baby!!
Still dealing with the headaches and major tiredness but no vomiting! Krystal finally felt good enough to have her lab work done.
Wonder if it has anything to do with Casper; the new boyfriend ;) Hmmm... : ) : )

I need to call the endo. tomorrow to get an appointment to go over the results. A couple of things are out of range but not too many; so it's a good week.
She saw the neurologist today. He upped the beta blocker again, and gave her an rx. for the migraines. All in all, it was a good appointment. Her BP and pulse were really good... YEA!!!! She goes back in a month.

The tattoo's looking pretty good; healing a little slow, but nicely. Sean's going to touch it up when it's all the way healed.
I think he's going to touch up Casper's this weekend; his is totally healed. He needs to get it done now as he's leaving to go back to Iraq (2nd time there!) next week. : (

Will let you all know what the endo. says about the lab results as soon as we hear anything.

Ren

Casper: It's so nice to see Krystal smiling and happy again. Thank you for treating her with such respect and showing her how a girlfriend deserves to be and should be treated! TMP

Sunday, August 22, 2004 4:19 PM CDT

Well... she did it. Or rather, THEY did it! She and Casper (Brad) got their tattoos... *sigh*

Oh well; she's 18 so not much I can say. She said it tickled for about the first 30 seconds... and then it hurt... alot!
It's on her lower back in the center; just above her butt.
She got a Claddagh ring; she used to have a real Claddagh ring that Candice gave her but it's been "misplaced." Still hoping it will show up. It's Irish; for her Irish heritage. A Claddagh Ring is a ring with two hands clasping a crowned heart, usually given as a token of love or friendship. The crown has one big blue stone on the center point; which she says is for Candice and herself. On each side of the center stone there are smaller stones. The first ones are lavender; 1 each for Chuck and I. Next are pink stones; 1 for each grandma and finally on each end are blues stones; 1 for each grandpa. It actually came out pretty good. She did not get the hands part of it done yet. Sean wanted to see how she "reacts" before doing too much. So, if she has too bad of a reaction it will stay as it is now; which still looks good.

She got her tattoo first and then Casper got his. I had to work so I was not around for the most part; which is a good thing. Ewwwww... Candice and Casper were here. Casper sat with her the entire time to make sure she was doing OK and getting her extra meds. when she needed them; which she did. She ended up taking an extra 20mg. Cortef (10mg. before they started and then another 10mg. about half way through). It was a bit "rougher" on her than she anticipated but she is glad she got it done.
Casper got his "Casper" the ghost next and Krystal kept him company : ) while he got his. It turned out really nice also. He wanted to get it before he went back to Iraq (which is in a few weeks). Sean did a really good job on both of them. I am asking Casper put pics. on here so check out the photo page. The pics. were taken right after they got them done so they are still a bit on the pink/red side... will put new one's up in a couple of weeks when they are a bit more "healed." : )

She's having a bit of a rough time now though. I think her body is "fighting" the tattoo... but it's really hard to say if it's the tattoo or just her health problems in general. She knew there was a chance that this might happen and she has debated for over a year if she would get the tattoo or not. But obviously, she decided to go ahead with it. She was on antibiotics for 2 weeks prior to getting the tattoo so we thought it was probably a good time to get it if she was going to.
I think the decision was partially that it kind of put her in control of her body for a change; if even for just a short time. And lately, with all of the ER visits and drama in the last 4 months, she really needed that feeling of control. : )

: )

Ren

Thursday, August 12, 2004 12:35 AM CDT

Hi guys! This entry is a bit long... but oh well. : )

Well, we did Vegas! Quite an experience... I even gambled and won 10 cents! Woo woo baby!!! I rock! It averaged 105 to 115 the entire week. It's a much dryer heat then home, but guess that's to be expected when you live 10 minutes from the beach; huh?! : )
It didn't feel as hot outside as it actually was which in itself was kinda bad for Krystal because she would be outside doing OK and then all of a sudden the heat would smack her down.
She almost made it through the entire week... but ended up in the ER the night before we left.
She went out Wednesday... she was on a mission...
She had picked up a couple things for Casper but was collecting "playing cards" to send him while he's in Iraq. She had a few of the guys with us "collecting" cards for him too; it was rather comical! Anyway, she had been out for a couple of hours Wednesday (got a cool mirror for Neen) and went back to the hotel to rest. Around 5pm we (over 2,000 CSEA members) "marched" on the Aladdin Hotel/Casino in support of some of their workers who have been trying to get a contract for 3 years. About 15 minutes after we left our hotel Krystal called my cell to see where we were; she had decided to join us. She was passing water out to so many people and having a great time helping out. She was/is our unofficial "water girl." Unfortunately, with over 2,000 people picketing on the sidewalks it took us longer to get back to our hotel than we realized it would; and by the time we got back she was wiped out. We had ridden to Vegas with our friend David, so I didn't have a car. I couldn't get any of our group on their cells so I ended up calling the hotel security and they came to the room. After going rounds with the guy if the paramedics should be called or not, we got a cab and got to an emergency clinic within minutes. She ended up needing 2 bags fluid, 125mg. Solu-medrol, Imitrex for her migraine and Phenergan. We were out within 4 hours...

It took her a while to bounce back this time; almost a full week. She was in the ER a week ago Wednesday and Tuesday was the first day she "felt good." She even commented on how good she was feeling in the afternoon. She was smiling, and happy and having a really good day.

And then... she almost ended up back in the ER Tuesday night; but that was due to emotional stress thanks to a VERY RUDE phone call from one of her ex-boyfriend's friends... which there is no point of even going into. We have found that the emotional stress affects her so much faster than the physical stress does; it's amazing.
Luckily, Candice (being the oh so good big sister that she always is when Krystal's sick) sat with her; there are some things and times that you just need a sister for... and not mom... which I totally understand! They "drugged" Krystal (heeheehee), and sat and talked which was nice.

Candice has quite an interesting view of "stupid people" and the childish, drama ridden games that some people seem to thrive upon.
She also realizes (as does Krystal) the value of GOOD friends. Thank you Smiley for always being there for your little sis!
Krystal is so lucky that she has a couple really good friends who are always here for her when she needs them; Jenna and Casper. They are her two best friends!!

Jenna came over Tuesday night and the girls hung out till about 2 or 3 in the morning. Jenna is diabetic and has such understanding of what Krystal goes through. She is ALWAYS there if Krystal is having a rough time and needs her. She is such an amazing friend! Thanks Jenna!!!

The same holds true for Casper. He is always checking on his "lil sis." as he calls her. Thanks Casper!!! He and Krystal have such a good time just hanging out. He took her shooting a couple of weeks ago; she has never been and loved it! You should see their targets... : ) She can't wait to go again. She is really going to miss him when he goes back to Iraq next month.
Casper just had his wisdom teeth pulled Tuesday, so he's out of commission for a few days; poor guy. : ( But they managed to text message each other yesterday... and he's a happy camper right now thanks to Vicodin... : )
He's kinda like being "drunk in publi...k" right now... ; )

Krystal's other two really good friends don't live in CA. any more. Brianna is living in Chicago now and Kamisha lives in Pennsylvania.

Well, off to see if our cucumbers and dill came in; time to make dill pickles! Supposed to go camping today but waiting to hear on the cucs first...

Hope everyone's keeping cool in this heat we are having... OH!, and don't forget to dump that standing water. We don't want to hear of anyone else battling the West Nile Virus!!!!

Ren

Wednesday, July 28, 2004 5:31 PM CDT

Well, I took Krystal to the dr. yesterday. She has a bacterial infection. He put her on Z Pak (zithromax antibiotic) for two weeks. The insurance wasn't going to pay for it because you are only supposed to take it for like 4 or 5 days. But her dr. said that will not be long enough for her; he wants her on them for 14 days straight. Her BP is low today... was down to 90/40 earlier. She is not able to keep any food down.... not even water. It's a major effort to keep her meds. down. She's been sleeping all day.

We are supposed to go to Las Vegas Friday for my CSEA convention till next Thursday. We are hoping the antibiotic starts helping by tomorrow... but at this point, it doesn't look like we will be going. Oh well, no biggie...

Ren

Mini update!!!! 7/29/04:
OK, we're going... leaving Friday about 9am; riding with our friend David (Sharon's hubby). If all goes well, we will be back next Thursday evening... if she has problems, we'll be back sooner... : )

Monday, July 26, 2004 5:36 PM CDT

Well, she's sick again... damn! Her endo. wants to see her tomorrow. Not sure if it's a virus or her Addison's. She got sick Saturday, had almost a 102 temp... remember her normal temp. runs a degree low so she actually had about a 103 temp.
BP was pretty low yesterday; like 80/50 and she was throwing up throughout the night last night.

Candice took her dancing last Wednesday at the Crazy Horse. She had an OK time but was a bit lonely so she walked around the Spectrum by herself for a bit...
They went to the Stampede Friday night; Casper went with them; which was pretty cool of him considering he doesn't like country music/dancing. She enjoyed herself much more having a friend with her; someone to talk with and all!
She really looks forward to going dancing; it's about the only time she gets out of the house!

She was able to make the fishing trip Saturday;3/4 day trip. She, Chuck, and Casper went... they had a great day... caught their limit... I guess she fell asleep around 11am though. When they got home from fishing she took a shower and laid down; was asleep before 5pm Saturday and slept till about 10pm last night, got up for a few, and laid back down till almost 1am.... and then the vomiting began. She is totally drained and exhausted... thank goodness the "kids" helped me keep an eye on her yesterday so I could run get Advil from the store for her. Thanks guys! : )

Well, need to go check on her.

As always, I'll keep ya posted! : )
Ren

Tuesday, July 20, 2004 3:28 PM CDT

HI guys!

Went back to the neurologist this morning.

Regarding her sleeping so much... he thinks it is just taking time for her body to acclimate to the drug as the sleeping can be a side effect of it. He was happy with her BP; it was 102/61 & her pulse was 70.

They discussed her "stress levels" of late and the fact that she's still getting the sudden migraines.
But as the headaches are not as often, he's keeping Krystal at the same dose of the Propranolol. He told her at her last visit that this would take time...
So, she goes back in 6 weeks unless she has problems. YEAH!!! : )

Other than that, she's doing OK. Very tired and sleeping A LOT, but considering the heat right now... she's not doing too bad. She's been hibernating in her room with the air conditioning on most of the time... : )

She actually just came in from laying out for about 15 minutes... too hot outside; so once again, she's back in her room, laying down, with the air on...
I think this portable air conditioner is the best thing we have ever bought!!!

Ren

Monday, July 12, 2004 4:58 PM CDT

I just spoke with Krystal's neurologist. Her BP and pulse have been running really low since Friday.

She's been having readings like:
87/49 P 66
84/59 P 76
100/59 P 63
84/53 P 66
Her BP runs low normally, but not this low; and her pulse is usually right around 100 minimum.

Today she's running around 100/60 P 78 which is better. The neuro. wants me to monitor her throughout the week and call him immediately if it goes back down and stays down. She is very tired and sleeping A LOT. He said the tiredness could be from the new med.

She rented some videos yesterday so she is just going to try and relax, watch some movies tonight and not stress over all of this. : )

We took Krystal's best friend Brianna to the airport yesterday; she went to Chicago. She's visiting her sister for a few months. Krystal is really going to miss her.

I think the movie watching/relaxing is a good idea right now... : )

Thanks to EVERYONE at Healinglight and HopeOasis for the advise and suggestions over the weekend! You guys are lifesavers!!!

Scooby, thank you for calling or emailing every morning to make sure she took her meds.
Casper & Alex, thank you for always calling to see how she's doing.
That is very cool of all of you!! : ) TMP

Will let you know how the week goes...

Ren

Thursday, July 8, 2004 6:14 PM CDT

Hi guys,

Quick update...

Candice's foot is still sore but healing; the bruise is finally going away... damn deer! : ) But it's not so bad that she couldn't make her weekly trip to the Crazy Horse last night! : ) She didn't/couldn't dance but was able to hang out with friends. We are ALL still laughing about her "run in" (literally) with the deer... damn deer! : )

Krystal's having a bit of a rough week; we finally got all her new rx's so she started the iron pills yesterday. I KNOW the iron will really help her to fell better and help her energy level. She didn't even get up till 2:40pm today and had to lay back down an hour later. She got another really bad headache last night; I think she still has it today... the new med. the neuro. gave her for the migraines takes a while to work I guess...
We went up to the Spectrum last night to look for a pair of "good" sunglasses at the Oakley store but were unable to find a pair. She wasn't feeling too well so we couldn't stay there all that long. The sunlight causes almost instant headaches lately... but that should improve once the new med. kicks in.
We had so much fun at Neen's last weekend; it was very relaxing!! Think we need to do that more often! Swimming... horse shoes... good food & drink... the guys were even swinging golf clubs. Thanks Neen & Frank! It was really nice!

Well, that's it for now. Hope you all are having a nice week...

OH!!!!!!!!! Grandma B... or now better known as "Pyro" (I'll explain the name some other time), has an apt. with the pulmonary surgeon next Friday, the 16th. PLEASE keep good thoughts going for her!!!!!!!!!!!!!!! : )

Ren

OH, OH... DOUBLE OH!!!
HAPPY BIRTHDAY BIG BROTHER!!! That would be my bro. David for those of you who don't know!!!!!! : ) : ) : )

Thursday, July 1, 2004 12:38 AM CDT

Went to the neurologist...he does NOT think Krystal has MS!
Woo Woo BABY!!!!!!!!!!!!! YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HAPPY DANCE, HAPPY DANCE, HAPPY DANCE!!!

He looked at the spot on the MRI and said we will watch it and redo an MRI in about a year... : )

Krystal really likes this doctor! When she described her headaches, he told her they are migraines; we didn't even realize that. He then commented on how often she "sighs" and breathes in deep... again, we had not realized this. He checked her BP laying vs. standing... yes it dropped on standing; always does. : )

After a lengthy conversation and exam here's the bottom line...
He is starting Krystal on yet another new med.; a beta-blocker called Propranolol. He straight up told her that he hates adding another med. to her regime but that he thinks it will benefit her; and if not then she will of course stop taking it.
He thinks the Propranolol will help the headaches, BP, heart rate, etc... but it will be a slow process and take time. So we shall see.

She has been on quite an emotional roller coaster this past month; which of course is not good at all and definitely has not helped her health issues. But now, for many reasons, it looks like things will calm down. She is done with school, we are finally getting some answers to health questions and she has some VERY good friends (and sister) who are looking out for her "physical and mental" well-being 24/7!!!

We are having a slumber party of sorts here this weekend... the guys on base have a 96 for the holiday weekend and we invited "a few" of them to stay here... better than sitting in a room on base all weekend; ya know. : ) And Chuck and I don't mind at all. If our kids were far from home we would be so happy if they had a home to go to... Good thing I have a big living room...
Chuck is going to help one of the guys hook up some speakers in his car tomorrow. He was wanting to take Scooby fishing last Friday but that never panned out; bummer... I think a couple of the guys are going to ride their bikes to the beach down the creek trails today or tomorrow... it's a bit of a way on the trails but then again... their marines, they can handle it. : )

Well, I hope everyone has a wonderful 4th of July weekend! And for ANYONE who did not read the story of our "encounter" with the deer the other night... be sure to check out my last journal entry... we are STILL giving Candice a hard time about it!!!!!!! And laughing our asses off!!!!!

Ren

OHHHHHHH.... we just found out that Grandma B's dr. thinks she is a candidate for Lung Reduction Surgery... please keep good thoughts going for her and that the surgeon says,"Yes!" She's the best!!!!

Tuesday, June 29, 2004 9:21 AM CDT

The neurologist's office called yesterday and had a cancellation today so Krystal goes in to see him at 3:00PM today! We are so glad she does not have to wait another 2 weeks!!! Will let you know what he says as soon as I can!!

OK, and on the totally bizarre side and this has NOTHING to do with her Addison's...

We were taking home one of the girl's friend's, Casper, to base last night about 10:30PM. The road was kinda dark but not too bad. We pass a sign that says watch for "wildlife" and just as Candice is saying to watch for deer... one runs out of the bushes. I DID NOT HIT THE DEER!!! IT HIT ME!!! It ran into the side of my car! OMG!!! The girls were screaming; it was insane! As soon as I stopped, Casper and the girls jumped out of the car an ran back towards the deer. As Candice is running up to the deer, it jumps up, runs around in a circle a couple of times, runs into the bushes and then it CHARGED Candice! It stepped on her foot and then ran between her legs and ran off!!! Another car almost hit the deer and stopped.

The guys in that car get out, ask if Candice is OK, and then she, through her tears, tells them yes, but she thinks the deer is hurt. As Krystal is trying to get Candice back in the car (for a change, she took care of Candice instead of Candice having to take care of her), OMG, we look up and ALL 3 marines were out in the bushes trying to make sure the deer was OK; you should have seen them!!!
The driver of the other car even angled his car so his headlights were shining in the bushes so they could see. They were soooooooo nice; all 3 were so helpful! They concluded that the deer was alright (and if they were lying, I don't want to know!), so it helped "lighten" the atmosphere as Candice was extremely upset. When we got back on the road heading to the barracks we lost it... laughing at Candice and making jokes! OMG, my daughter got run over by a reindeer... and then on the way home, of course the girls went into the Bill Engval routine of, "There are 3 ways to kill a deer..."

Candice's toes are pretty bruised and hurt her pretty bad... but luckily she just got her toes stepped on... isn't the first time, probably won't be the last. Krystal told her she has some serious thrill issues... heeheehee!!!

Candice had to call and tell Grandma K. about the ordeal; and grandma started laughing at Candice asking her what the hell she was doing chasing a deer in the middle of night on a marine base. Krystal was laughing and saying it was Grandpa messing with Candice, and she could hear grandpa in her head laughing his butt off!!

I guess it was just one of those, you just had to be there moments...

Thursday, June 24, 2004 9:53 PM CDT

Went to the endo. today for MRI & lab results; Krystal's anemic. Her ferritin was bottomed out; range is 10.3 to 282.1 and her reading was 10.3; so now she starts on iron.

The MRI looked good for the most part, except one of the impressions/findings said "Nonspecific bright signal intensity focus in the left periventricular white matter." Dr. F. said that this would not be of any concern if she had been totally healthy over the past year but he just wants to make sure everything is OK.
He said the "white matter" is not unusual for elderly people but as she is just 18 and not been well and in the ER twice in the past two weeks, he wants it checked out.

He vaguely mentioned/mumbled that it is also a symptom/sign of MS. Krystal picked it up immediately and asked if she now has or is getting MS. He STRONGLY told her that he does NOT think she has MS!!!! but he is referring her to a neurologist to read the results as a neurologist deals with this type of MRI more than he does and he wants to see if the neurologist can figure out what's going on. He told us to get the actual film to take to the neurologist so he can look at the pictures rather than just read a report.

Yesterday, Mattie Stapanek passed away; many people know him from Oprah or the Jerry Lewis telethons; he was 13. Krystal was very saddened when she heard the news; as were we all. I mention this because Mattie is the person who has inspired Krystal's positive attitude with her Addison's and all the other illnesses she deals with. Our thoughts and prayers go out to Mattie's family and friends.

What an inspirational young man!!!!

~j~j~j~j~j~

Ren

PS: Krystal updated the photo page!

Personal note...
Scooby, thank you for hanging in there with Peeps through all of this. You are one hell of a good person!!! TMP

Friday 7/25/04: Just got an apt. with the neurologist for July 9th...

Sunday, June 20, 2004 11:22 AM CDT

Mornin all! : )

Quick addendum to this past weeks events...

Took Krystal into Dr. Fernandez on Thursday. She should be feeling better than she is after getting the fluids and steroids in the ER Monday night but she's still pretty drained. She commented that her hair is still coming out by the hand/brushfuls too.

When the nurse checked her BP it was like 100/60; he asked if she always ran that low... new nurse. : )
Dr. F. ordered more labs, a chest x-ray, and an MRI of her brain and of her pituitary gland. The labs are standard to check all of her levels. The x-ray is because she has had an annoying cough for 3 or 4 months now, and the MRI is to see if she has a pituitary tumor (like her big sis!). He put her on an antibiotic thinking there might be an underlying secondary infection going on with the cough.

His office sat on hold for 1 & 1/2 hours to get approval for the MRI; but they got it. When the MRI tech. tried to inject the dye for the MRI, he of course blew her vein and she got a HUGE bruise from it. We had to go back in Friday and have them check it. We have noticed that she has been bruising easily and the bruises last a really long time. The tech. said she bled very easily and very badly; like an elderly person who is on coumadin or aspirin would.... Krystal said he had a bit of a time trying to stop the bleeding.

She goes back into Dr. F. this week for the results; will let you know what he says. He also said is going to "re-evaluate" all of the labs/tests that have been done since her dx. of Addison's because at this point he is perplexed and admits she is not a typical or classic Addisonian... hmmmmm...... ya think? : ) Actually he is a GREAT dr. and we really like and trust him!

Yesterday she and Candice went to the beach for a few hours for Emily's birthday (cousin). HAPPY 16th BIRTHDAY EM!!!!! Woo Woo baby!!!!! As soon as they walked in the house she fell asleep... actually, they both did. : )

Hope you all have a great week; it looks to be a busy one for us. We are busily preparing for a wedding reception here next weekend (Sunday) for Chuck's sister Jane who is getting married Friday.

Well, Happy Father's Day today to all the dads! : )

And again, HAPPY 16TH BIRTHDAY EMILY!!!!!!!!!!!!!!!!!

Ren

Tuesday, June 15, 2004 7:46 PM CDT

Well, it's been one hell of a week; no other way to word it!

Last Thursday was graduation... Bryan took Krystal to the morning practice (he was able to get the day off work; thank you USMC!) and the heat made her sick so they had to leave. As they were leaving, a campus supervisor stopped them and gave them an extremely hard time and would not let Krystal leave campus because she did not have her school ID with her; which Krystal explained having not attended classes on campus for the last couple of years, she doesn't have one. Didn't matter; Krystal had to stay and Scooby had to go as he was not a student there. Krystal ended up VERY upset and crying on top of already not feeling well, and had to stress dose right there on the spot. She and Scooby called me on the cell. I tried to explain that due to Krystal's medical condition she needed to leave and Scooby needed to stay with her because he knew how to take care of/treat her condition. I even asked her to call the office and verify what I was saying; which she would not. So, I went to the school and "took care of business." : ) Actually, I'm still taking care of business!! DO NOT PISS OFF THE MOTHER PERSON!!!!! Damn!

Scooby took her home and she rested until time to go to the commencement. We double dosed her meds, she felt better, and the graduation ceremony went well. Party at home afterwards was great! Krystal was so excited; Grandpa B was able to make it. He is the only person she called personally to invite. It meant so much to her that he was here! Thank you grandpa!!!!

She was pretty tired Friday.

Saturday was Grandma K's birthday party; total fun at Neen's new house w/pool. : ) Very cool house Neen & Frank!!!

She was pretty drained Sunday due to the "circumstances" of the week and was still totally drained last night, despite our upping her meds throughout the weekend so the decision was made to take her in.

So, back into the ER we went. They were so busy. She had to wait over 30 minutes just to get triaged; 3 hours after we arrived, they finally took her back to a bed. We were there about 5 hours. They were going to admit her but decided not to when the fluids & steroids helped. The 2 blood levels that were out last time she was in the ER (2 weeks ago) were WNL so that was GREAT! Her white count is up but that could just be from the added steroids (hoping!). She is totally exhausted and sleeping now.
She and Scooby were supposed to go to the movies tonight; guess that will have to wait for another day.

We really need to figure out what's going on. It's like she's on a major roller coaster right now. She looks and feels great and then an hour later she is drop dead tired and totally exhausted. One day she can go for hours and hours; another day she lasts maybe an hour. Hmmmm........ go figure!

So now, once again, I am awaiting a call from her endo. to see what he wants to do this time... : ) Will let you know what he says.

Ren

Wednesday, June 2, 2004 12:45 AM CDT

Had to take Krystal into the ER last night. She got rather dehydrated over the weekend and I just could not pull her out of it. : (
A bit too much physical & emotional stress going on over the past few days and her body just can not handle the stress. Most Addisonians I know are the same... stress is the worst and most common factor in their going into a crisis. We tried massive amounts of water, Gatorade, and of course, upping her Cortef. But each extra dose of Cortef just seemed to be a very short term, temporary "pick me up" and then a couple of hours later she would crash again. I called her endo. and he said take her in.

Candice even showed/taught Scooby (Bryan) "The Candice Comfort Method for Warming of The Peeps" strategy for hospital/ER visits; just in case Candice is ever not there to warm Krystal up. Heeheehee...

They normally give her 1 bag (1 liter) of saline fluids but the dr. gave her 2 this time; I was VERY surprised she needed 2! I think it might have had something to do with the fact that her BP & P (blood pressure & pulse) were bouncing around a bit.
B/4 we went in, it was fluctuating from 127/82 to 97/63. Her P was between 80 & 98 at home and in the ER it was down to 70; which for Krystal is VERY low! They ran labs (they always have to run labs to check her electrolytes, etc...) and a couple of the results were out of range. Her AST & ALT (Liver function tests) were a bit out of range but the ER Dr. was not overly worried. He told me to call her regular endo. today and he would follow up; all other labs were WNL (within normal limits). I faxed her endo. her lab results earlier and am waiting for him to call.

Krystal's nurse, Christina, was awesome! She hit Krystal's vein on the first try! Woo Woo baby!!!
When she asked Krystal if she needed anything, Krystal replied, "Just my salsa."
I smiled and explained that she meant "The boyfriend."

Oh, and yea, as always, she was in a private room due to her immune/susceptibility factors and the fact that there were probably 6 people in there vomiting all over the place... oh the aroma...

When we first got Krystal checked in I asked if there was somewhere other than the main waiting room that Krystal could sit in as there were 3 or 4 people sitting out there vomiting and I explained the whole vomiting can cause a crisis, life threatening situations, blah, blah, blah, Addison's stuff to the BOZO. She told us there was nowhere else to sit but she would give her a paper mask. I know this won't surprise anyone but I managed to find a "secluded" area down the hallway for Krystal to sit in.

Well, I am falling asleep sitting here so I think I'll try and take a little nap; I've been sleeping about 2 or 3 hours a night max. the last 3 night... but it's all good! Give me a quick nap and a few Rock Stars and I'll be good to go!! : )

Krystal is sleeping now; we were at the hospital almost all night.
Candice is sleeping too...

Scooby had to be at work on base at 7AM this morning. The poor guy has not had any sleep at all. Thank God marines are tough! : )
He is definitely getting a picture of what Krystal's life is like...
He really takes good care of her when they are out anywhere; he always makes sure she has her meds., reminds her to take them, etc...boy, he scores major Brownie point with TMP (me) for that! I know I don't have to worry about her when she's with him.
Candice is actually the only person I have COMPLETE confidence in when it comes to taking care of Krystal in a medical situation, because she's always been there and has dealt first hand with Krystal in a crash and in a crisis; but Scooby is climbing that later very quickly. It's quite a relief. : )

Will keep you all posted!

Love you!
Ren
PS: Grandma B is in the hospital again with "lung" problems... PLEASE keep her in your prayers!! She really is the bestest (yes, I know it's not a real word) mother in law in the world!!!! : )
I really luff her!! (again, yes, I know it's not spelled correct) : )

Thursday, May 27, 2004 8:41 AM CDT

Well, prom went very well! Thank you Candice for putting up the picture of Peeps and Scooby! : )
We will get a couple more up in the next day or so.
She/they had a very good time; only stayed a couple of hours though. They went to Grandma K's house when they left prom. Krystal wanted her to see them all dressed up. She was going to call & go by Grandma B's also, but it was very late so they were not able to stop by and see her. But she sent her pics.!

Krystal said they stopped to get gas on the way up and a guy at the gas station started talking to Bryan (yes, he has already been to Iraq) and asked him if he could shake his hand. Now, how very cool is that?! And in my opinion that is EXACTLY how it should be. Candice received a phone call from a very good friend of hers a couple of days ago that is in Iraq. He was hurt and is in the hospital for about a month and then will go back out in the field. He's there till Sept. or Oct.; just turned 20 a few months ago! A girl from Krystal's work just told me yesterday that her husband is leaving to GO BACK! It's is 3rd deployment to Iraq!! Please keep all of the guys/girls that are over there in your prayers!

Krystal went into the endo. Tuesday. Her globulin count is slightly low (kidney stuff) but he is just going to monitor for now as most of her other levels were good. A bit concerned that her MPV (mean platelet volume) has been on the high side for so long; a over a year now. But her cholesterol was fantastic! : )
He upped her synthroid and is having her start chromium picolinate and B-12 lozenges to see if it helps her energy level. He will recheck the globulin and other labs in 3 months.

She seems to be getting "drained" very quickly lately; has had a few crashes in the last month. I told her she NEEDS to start telling us/Bryan when she's starting to drop. She is trying to "be normal" and keep up and just go out and do "regular people" stuff and it's smacking her in the face so to speak! I am sure it is quite frustrating for her.

She received an academic achievement award last week at the high school. It was for "over coming adversity and meeting her academic and personal goals in high school." Oh wait... proud mom moment coming on! Yep, there it is!
Krystal is graduating on June 10th. We are just doing a small "family" thing at the house afterwards. We realize that as it's a week day (and graduation is at 4PM) that most family and friends will not be able to attend. If anyone would like to come to the graduation or come by the house afterwards, by please email me at the address listed below and I will give you directions!

Ren

Friday, May 21, 2004 5:06 AM CDT

OK.... I KNOW THIS IS MY SISTER'S PAGE AND ALL, BUT, I WOULD LIKE TO TAKE A MOMENT AND LET YOU ALL KNOW OF THE WONDERFUL MOTHER THAT I HAVE. TODAY.... WELL ACTUALLY YESTERDAY.. KRYSTAL AND I ATTENDED A FUNCTION BEING HELD BY CAPISTRANO UNIFIED SCHOOL DISTRICT. THIS FUNCTION IS THE ANNUAL CLASSIFIED EMPLOYEE AWARDS. YOU SEE, ONCE EVERY YEAR PEOPLE ARE ABLE TO NOMINATE A FELLOW CLASSIFIED CO-WORKER FOR THIS AWARD. THIS AWARD STANDS FOR THE EMPLOYEES THAT GO ABOVE AND BEYOND THE CALL OF DUTY. OUT OF 86 NOMINEES ONLY 7 PEOPLE WILL GET THE AWARD. ALL THOUGH MY MOM DID NOT HAVE THE FORTUNE OF RECEIVING THE AWARD THIS YEAR SHE TRULY DESERVED IT. WHERE DO I START??

MY MOM IS AN OPPORTUNITY ASSISTANT, BASICALLY SHE IS THE ONE WHO KEEPS KIDS ON TRACK WHEN THEY GET SENT TO DETENTION OR ARE SUSPENDED BUT KEPT AT SCHOOL. SHE IS ALWAYS THERE MAKING SURE HER WORK IS FINISHED. MY MOM ALSO DOES THE ENTIRE CALENDAR FOR HER SCHOOL. SHE ALSO DOES SOME OTHER STUFF BUT I AM NOT TO SURE WHAT IT IS. AND BESIDES ALL OF THAT SHE IS THE CSEA (CLASSIFIED SCHOOL EMPLOYEES ASSOCIATION) TREASURER. AND LET ME TELL YOU.. THAT IS A FULL TIME JOB IN ITSELF SOMETIMES. SHE ATTENDS MEETINGS 2 TIMES A MONTH TO KEEP UP DATED ON WHAT IS GOING ON DISTRICT AND STATE WIDE. SHE IS ALSO ON TWO COMMITTES FOR THE CLASSIFIED EMPLOYEES. AND NOW TO TOP IT ALL OFF, YOU ALL KNOW OR HAVE READ ABOUT MY SISTER KRYSTAL.

WELL, LET ME TELL YOU.... ON TOP OF EVERYTHING I JUST TOLD YOU ABOUT MY MOM... SHE SOME HOW FINDS TIME TO RUN MY SISTER TO AND FROM THE DOCTORS, MANAGE THE HOUSE HOLD, GET MY SISTERS MEDS. IN ORDER, KEEP UP WITH ALL OF YOU, SHE KEEPS CURRENT ON MY SISTERS LAB WORK, AND LAST BUT NOT LEAST SHE FINDS TIME IN HER BUSY SCHEDULE FOR US... HER FAMILY. I JUST WANT EVERYONE TO KNOW WHAT AN AMAZING PERSON MY MOTHER REALLY IS. THANK YOU FOR TAKING THE TIME TO READ THIS. THERE IS A PICTURE OF MY MOM AND US IN KRYSTALS PHOTO ALBUM.

LOVE ALWAYZ, CANDICE

Friday, May 7, 2004 10:16 PM CDT

Well, I must say that the past week or so has been good. My lil sis (Krystal) is finally happy for once in her life!!! For you all who don't know her.. she is 18 and has not been to school in the last 3 years. My sister has a bunch of different autoimmune diseases, Addisons, Hashimotos, Vitiligo, POTS, Hypoglycema among the few. Krystal has not been allowed (by doctors orders) to go to school. So you can imagine what she has not been able to experience. She finally got her ID in the mail about a month ago. So I have been trying to take her out so she can meet people. Maybe meet some new friends. Well, I took her out last weekend and she met a guy. YEAH!!!!!!!! She was so excited. My sis is very shy so she would not go talk to him. The funny thing was that my friend told me that the guy was to shy to talk to her. Anyway... they ended up talking and hanging out, and low and behold my sis has a boyfriend!!!!!!!! I am so glad to see her happy for the first time in such a long time. The other night he asked her to prom!! Which Krystal thought she would never be able to go to. And now she is going. His name is Bryan. He is 20 and he is a LCPL in the Marine Corps. They are totally into each other and have so much in common it is great. And on a different note. Krystal Is going to be able to graduate this year with the rest of San Clemente High School. For those of you that know my sis please drop her a note here and let her know how excited you are for her and those people that might happen to read this you can comment too. If any of you have any questions PLEASE do not hesitate to ask!!!!!!

Love You All, Candice

Sunday, May 2, 2004 11:50 AM CDT

Been a busy couple of weeks. We had the best time at our anniversary celebration; 25 years! Woo woo baby!! Many thanks to my brothers, sisters and mom for the GREAT dinner!!! It was so nice and relaxing. The girls made really cute guest gifts for everyone. It was awesome!

Candice has been taking Krystal dancing with her on Saturday's to the Stampede in Temecula; country dancing of course. They are really enjoying the time together. It's so nice that they are able to go together now that Krystal's 18. Krystal learned very quickly that she needs extra meds. B/4 they go in. It wipes her out a bit the next day but she really enjoys it. I wish there was a place a bit closer to home; the Stampede is an hour away. Oh well. : )

The temperatures have been up this past week and are supposed to really go up today and for the next few days so I don't think Krystal will be doing much outside. I bought 8 bottles of Gatorade yesterday and am sure they will be gone by next weekend. She's still not feeling too good. She gets drained very quickly. It's quite easy to tell when she's not feeling well; she is as pale as a ghost! We are finally going to be able to get her labs drawn tomorrow morning. Will let you know how it goes.

Ren

OHHHHHH!!! 2 THINGS!!!

1. Candice and Krystal went to Disneyland/Calif. Adventure last Monday for the premiere day of Tower of Terror. They said it is so scary and soooo cool!!! : )

and # 2...

HAPPY 18TH BIRTHDAY RACH (April 30th)!!!! You go Miss Princess!! hope it was a great day!!! We love you!!

Sunday, April 18, 2004 10:28 AM CDT

I have talked with Carol; the "new" Addison's mom a couple of times. She lives VERY close to us. We talked about getting the girls together... I truly believes they would be of great support to each other. Krystal gave her her IM screen name so the girls can talk to each other on line.

Krystal finally received her California ID in the mail Friday; 4 months after trying to get it! Geez...
So, it was time for Krystal's right of passage into the (almost) adult world. Candice took her out so she could buy something that you have to be 18 to buy; so she could get carded! : ) No, no cigarettes!! She got her first Lotto ticket. Gee, I think I've bought Lotto ticket a whole 4 times in the last 3 years.

Candice took Krystal country dancing Friday night down in Temecula at The Stampede. She took an extra 10mg Cortef B/4 they went in. She had a blast. But last night she was really dragging. But it's all good... she had so much fun. She knows it's trial and error with her meds. when it comes to bumping up her dose. She said next time she thinks she will need to take the 10mg. B/4 they go in and then maybe another 5 a little later in the evening.

Krystal has learned that there is no set dosage when it comes to taking extra Cortef; she has to really stop and "feel" how her body is feeling at the time and make a total judgment call on the amount to take. She's learning...

On a different note... this Wednesday Chuck and I will celebrate our 25th anniversary! Actually, we are celebrating next Saturday; but April 21st is the actual day! Pretty cool; huh??!!

Ren

Tuesday, April 13, 2004 10:25 AM CDT

I took Krystal to the Ophthalmologist yesterday. She said Krystal has an allergy going; told us to get/try flaxseed for it. If that doesn’t work she gave us a prescription in which the main “ingredient” is flaxseed. She wants her to try the “real stuff” first because with the rx. Krystal would have to take up to 8 pills a day and she already takes enough pills!

She gave her reading glasses; said she now is slightly far sided with a stigmatism. She also reiterated that Krystal ALWAYS needs to wear sunglasses when she is outside.

As far as the cataract goes it was good news & bad…
Good news is she said there is no change; it has not become any worse! WOO WOO BABY!!!!!!
Bad news is she now has cataracts in both eyes; not just one.
I think we will focus (hehehe) on the good news!

Krystal’s hypoglycemia seems to be hitting her really hard right now for some reason; has been for the last week or so. I can’t figure out why??? Hmmmm… I am contacting friends who have diabetes and or hypoglycemia to ask questions.

I had a message on my answering machine yesterday about a mom whose 16 yr. old was just dx. with Addison’s and would really like talk with another mom! Naturally, I said ‘Of course!”

Well, break is over; need to get to work.

Take care,
Ren

Sunday, April 11, 2004 10:14 AM CDT

Wow! April 11th already!! Happy Easter everyone. It's also Chuck's birthday today; happy birthday honey! : )

Today is the "anniversary" of Krystal's Addison's diagnosis; 3 years ago today we finally started getting solid answers. Not the answers we would have hoped for; but at least it gave us a sense of focus and direction. Krystal was sick for over three years before that. You know, I don't know if the correct way to say it is she was sick or was getting sick but for three years she was continually feeling worse with no answers as to why except "she's a teenager" or "it's from the mono."

Over a year ago, I was having a conversation with a wonderful lady named Dee. She and I were talking about Krystal. I told Dee, "I truly believe in my heart that God will not give us more than we can handle." I live by this saying every day of my life.
Dee agreed that God won't give us more than we can handle; but then replied, "Oh honey, God did not do this to your baby... but HE WILL be there to help you through this!" And you know, when I thought about it, Dee was right.

So, we (Chuck, Krystal, Candice and I) have the attitude that we will just remain positive, learn as much as we can, and try and help as many others as possible along the way.

I have been able to talk with a few other "moms" who have children with Addison's. There are not many because most people who have Addison's are diagnosed "later" in life : ) but there are a few of us.
My very good friend Marge and I have shared many an experience... we both have teenagers with Addison's and we both have dogs that ate our teenagers steroids!! Now, that was NOT a fun experience for either of us... now of course it's funny... but at the time, not so funny! : )
My friend Carole W. (another mom of a teenager dealing with illness) is a plethora of knowledge about the thyroid and has been a great help! We have swapped ideas and suggestions on many health issues.

It's so very nice & helpful to be able to talk with others; mom's of "Addisonians" and also people who themselves live with Addison's on a daily basis.
I am continually hearing of and learning about so many different illnesses; it amazes me.

I have learned of people with Addison's who had pituitary adenomas (pit. tumors) like Candice has and they have shed quite a bit of light on that subject; which has been most helpful!! I think Candice needs to get a recheck of her tumor.
She's having a bit of a tough time right now also and a lot of the signs point to possible tumor growth.
We shall see...

Well, I hope everyone has a very relaxing & peaceful Easter day.

We are back to work/school tomorrow!

Ren

Tuesday, April 6, 2004 11:18 AM CDT

Krystal is feeling so much better!!! Woo Woo!!!!
She even asked me to take her to her work yesterday. She works at an animal hospital a couple of miles away. She has been off since around Christmas; when she started the fevers and all.
Krystal talked with Denna, the girl who does the scheduling, about coming back to work. Denna is going to try and schedule her a morning or two during the week; kind of ease her back into the swing of things. The week-day shifts are shorter than the weekends and she can schedule her on a day when there is another person working with her in case she's not feeling well. I thought that was so nice of her. And the morning shift is much better than the afternoon; Krystal really can not handle the heat.
Every time I've talked with the dr. there he always asks how Krystal is doing/feeling. And Deanna and all of the girls (and guy) who work there are the nicest people; they are always watching out to make sure Krystal is feeling OK. Krystal is so excited about going back to work.

Krystal was talking on the computer with Amanda (cousin) yesterday who is in Slovenia (other side of the world!) with Campus Crusades on a Christian outreach mission. At least I think that's what it's called. : )
Amanda told Krystal she has been sick with the "Euro flu" 7 times in 6 months. Krystal laughed and said that she (Krystal) has been "healthy" 7 times in 6 months.

I received an email from my friend Shauna who has Addison's and a few of the other illnesses that Krystal has. She has given me a lot of "first hand" information about hypoglycemia that I could have never found in print; I know because I tried! It has been MOST helpful! Thanks Shauna!!!
She and I were talking about a common misconception that goes along with Addison's. The most common complaint I have read from people with Addison's is no family and/or friend support. Thank goodness Krystal has both! The thing is... a lot of what you read about Addison's says a person can lead a "normal" life with proper steroid replacement. What it rarely says is that more often than not, people with Addison's end up with many other illnesses to contend with at the same time.
People assume that because you look healthy you must be healthy/feeling good. Or because you were doing great yesterday; you should be doing great today.
Shauna made a comment; she said, "Only we know what it's like to live in our bodies - nobody else does, nor do they understand the extremes of how bad we can feel (or how we appreciate feeling normal every now and again)."

Maybe this is part of the reason Krystal has such a positive outlook; she appreciates the good days so much more than you or I could ever understand. Hmmm... thanks for the insight Shauna! : )

Ren

Friday, April 2, 2004 9:10 PM CST

Well, this week hasn't gone exactly as we planned. I wasn't able to make the dr. apts. and we had to cancel the blood draw. Krystal is down again with the sore throat and all. She needs the "regular" labs drawn when she's not sick. She feels like crap. We're having a bit of a hard time finding meds to help her right now. Between her allergic reactions and med interactions it's not fun. I'm sure it would be much easier if she was only dealing with one illness but that's not here nor there; ya know?! Thought we were heading back into the ER yesterday; her BP was dropping pretty low, around 90/50 with her pulse up towards 120 again. But, once again, she was able to avoid that nightmare!

The week started out amazing. Monday afternoon was soooo cool! Three kids from my school won a drawing to attend a meet and greet with Blink 182. Our ASB director was not able to go so I went in her place. She told me I could take Krystal. Candice went with also as she knew where we needed to go. It was great; only 22 students and the adults who brought them. Only one guy from the band was able to be there; Tom DeLonge. He was so nice and quite interesting. Found out he is very interested in politics. Krystal and I stayed in the back of the room during the Q & A as this was for the school kids. She videotaped it though. At the end, when the students were taking photos and getting autographs, the girl who was in charge (Mollie) told Candice and Krystal to go get photos taken with Tom. I was glad it was almost over; Krystal was starting to crash and had to bump her cortef (steroid). She was getting pretty pale, but she made it. It still amazes me how quickly she goes down... less than 15 minutes this time. The cortef worked and she was able to take a couple of pictures with Tom and we were even able to have a brief conversation with him. He told Krystal his favorite president is JFK so he had heard of Addison's. It's kind of cool when people know about Addison's. The pictures aren't that good but we will try and put them on here so you all can see.
Tom's the daddy of a 20 month old. He and I had a brief "parent" conversation about how amazing it is to be a parent. What an extremely nice guy he is!! It totally made Krystal's year! The highlight of most girls in high school is senior prom but Krystal's will definitely be that she got to meet Tom DeLonge; so it's all good!!
Oh wait, guess it's kind of hard to go to a prom when you can't even go to school... but hey... she WILL be graduating in June!!! Woo Woo!!!!!
I know all of our family and friends (especially those who have Addison's) are aware of what an accomplishment this is for Krystal. The last 4 years have been very difficult for her.

I know that Maggie (ASB director) has no idea just how much it actually meant to Krystal to be allowed to go to this. I definitely need to show her the pictures. I was able to share with 3 of my very good friends at school about how exciting it was for Krystal. Two of my friends, Joni & Kathy are 2 of the most amazing teachers I have ever met. In fact, Kathy just won teacher of the year for MS for our entire district which says a lot in itself. Kathy & Joni are so there for the kids; always fighting for the underdog and trying to figure out how to help them all! Joni and a few other teachers are taking 60 8th grade students to DC this week. Wow!! They are, each in their own right, amazing teachers and amazing women; definitely what every parent wants and hopes for in a teacher for their children. My other friend (another Joni) is my office mgr. She was so excited that Krystal got to go. She has been so supportive; whenever I need to miss work for Krystal's dr. apts. and lab draws she is the first to say "go." She even drove me home to take Krystal to the ER the last time Krystal needed to go in. My administrators are the same way! I work with amazing people. Every single person that I have worked with this year at my new school impresses me!

It is so much easier to take care of Krystal when I can totally focus on her when I have to miss work to take her in for labs or whatever; and not sit the whole time worrying about how long the appointment is taking and what will be said when I return to school. I love my job and I love the people I work with.

Well, need to recheck her BP and temp... will let you know if she ends up having to go in this weekend! Keep good thoughts going!

Ren

Saturday, March 27, 2004 11:08 AM CST

Well, just a quickie update...

The ringing in Krystal's ears has become so bothersome that she has asked if she can go in and get it checked. It's also time for her recheck with the Ophthalmologist to see if there has been any progression of the "speckling" in her eye they have been monitoring (for cataract). Time for another blood draw for the endo also.

Looks like the next few weeks might be a little busy... and draining for Krystal. Good thing it's "Spring Break" in another week! : )

Ren
OH!!!! Happy Birthday Bobbitt!!!! : )

Saturday, March 13, 2004 12:42 AM CST

Well, we finally got all of the lab reports back. The Epstein Barr panel was positive; but that's no surprise. All other tests were negative; which, of course, is great. It is once again, that oh so familiar, double edged sword. It is such a relief to hear that the tests are negative; it's total elation... for about 10 seconds. And then, it's right back to wondering what's causing Krystal to feel so poorly? The frustration level and feeling of helplessness at times is unfathomable. However, I thank God those moments are very rare and short lived. I would say that 99f the time we remain focused on the task at hand, which of course, is getting Krystal feeling well!

She was doing pretty good for a couple of weeks there. She's been going to her Grandma K's house (my mom) a lot lately up in Huntington Beach. She tries to help her around the house and just be company for grandma. They both enjoy it. When mom and dad lived up in Oregon Krystal would go visit them whenever she could. For her 13th birthday, all she wanted was to go visit grandma and grandpa in Oregon. She had a blast!

She's been dealing with a cough and sore throat for a few weeks. I took her in for it week before last. Turned out she had a bronchial infection. They gave her zithromax and within 2 days she was much better and felt good for a few days. We were even able to go on a picnic; it was great! And then this little heat wave descended upon us while she was back up at mom's. She called me about 9:00PM Monday night and was not feeling well. Her BP was up, her pulse low, she was very nauseous, and her IBS had set in... is that a nice way to convey what I'm trying to say? :)
Luckily, she can now tell when she's getting dehydrated and can usually tell how much extra steroids she needs. I went and picked her up, brought her home, and she managed to sidestep that ER visit which was truly a blessing; especially after that last ER fiasco. I HATE nurses that are so arrogant when it comes to sticking someone else with a needle. I think every time a nurse has attitude and is saying she can hit a vein but then blows it, the patient should be allowed to try and hit the nurse's veins. hee hee... Bruises from a blown vein are not a pretty site and can be rather painful.

When Krystal was in the ER in January her BP was all over the place from 60 over something to 203 over something. She could not warm up; even with 3 blankets on her. So what did Candice do???? Climbed up on that bed, flopped down on top of Krystal, and cuddled with her. Warmed Krystal right up!

The heat/humidity affects Krystal much more now than when she was first diagnosed with Addison's; I don't know why that is. Last year was very rough on her and this year is staring out no different. Hmmm... I am going to check into buying one of those "portable" air conditioners you can move from room to room. Last year I waited too long and they were sold out. I got a little "window" unit but it wouldn't work with her window. Besides, we can put the portable unit in any room she's in. My friend Susanne turned me on to the portable units at Home Depot... thanks Susanne!

You know, I also need to thank Krystal's Aunt Didi for suggesting we set up this page for Peeps and Aunt Neen for forwarding me the info.! Thank you girls... YOU ROCK!!!!

Krystal is very blessed to have so many people who love and care about her. The support she has from our entire family is amazing. I read so many stories of people with Addison's who have no family support what so ever and it just breaks my heart. Also, the support I have received over the last 3 years from so many on the Addison's bulletin boards is phenomenal! I have formed many special friendships. Again, a thank you to Neen for finding the healinglight board for me!

If anyone ever has any questions please do not hesitate to email me. If I do not know the answer to your question, I will ask my reinforcements; the ever so knowledgeable people on the bulletin boards I frequent... they have been my lifeline!
Aspen's board www.healinglight.com was the first board I visited. I never would have made it this far without healinglight. Thank you Aspen!
Recently, my very good friend Doris (and her husband Vern) started another board www.hopeoasis.org
It too is amazing! And they just started a teen/young adult forum also. Krystal was going to be a part of the that forum but has just not been up to it. There are so many sites out there that I visit but these two are my favorite. The knowledge and experience of everyone on these boards is mind boggling. I encourage everyone to visit these boards and ask questions!
I will write more about my "lifelines" at another time as I did not intend for this journal entry to be so long; sorry. : )

Ren

Friday, March 5, 2004 9:14 PM CST

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