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Welcome to Krystal's Web Page 
Krystal with her new red hair & one of Neen's Wolfhounds
(that's Neen in the background)
June 14, 2008
Yep! The hair is "VAMPIRE RED"!! :-) It works well with the Bloodrayne hair cut! But if you know Krystal, it is fitting!!
My response to people who comment about her hair or Candice's tattoos is this... Do you smoke or know anyone who does? Smoking hurts not only yourself but everyone you are around. It is medically proven that second hand smoke can harm others... but pink hair and tattoos will harm no one else!!! Six months ago Krystal's hair was falling out to the point that she was seriously considering shaving her head; so if she wants pink, or red or blue hair now and it makes her happy...
THEN SO BE IT!!!
This page has been created as a means to keep family and friends updated on Krystal's health and daily life.
If you or a loved one has been recently diagnosed (dx) with Addison's Disease the first thing I ask you to remember are these 4 words...
DILIGENCE, DETERMINATION, PERSEVERANCE AND PATIENCE... All of which we have found are necessary in learning to live with chronic illnesses!
The second is to NEVER stop researching and learning. You will learn much and you will become your loved one's BEST advocate... and I can guarantee you that at some point in time, YOU will be their life line!! You will know more than that nurse in the ER (or evil room as we jokingly call it) who will admit to you that she/he had only one paragraph in their nursing book about Addison's Disease and it was barely discussed in school or the doctor who looks at you and asks, "Well, what should we do for her this time?" It will be YOU who educates the medical community about Addison's Disease!!
And third but by no means any less important... please remember that EVERY Addisonian is different and unique!!! The medication regime that works for one person may not work for the next... but NEVER give up! Yes, honestly, you will get frustrated at times and that's okay... you are human! But you CAN do this!!!! Everything we have read says with "proper" meds. an Addisonian should lead a "normal" life... what they fail to realize is that MANY Addisonian's also have other medical conditions in conjunction with their Addison's, so you have to factor in everything else; and to date, we have not read any text that addresses the issues of living with multiple chronic illnesses.
Today is April 11, 2008... an anniversary of sorts... or maybe milestone would be a better word. It was 7 years ago today (Chuck's birthday) that Krystal was initially dx. with Addison's Disease. It was 7 years ago that we finally got answers as to why Krystal just could not get out of bed in the morning for school, why she couldn't make it through the day without being completely exhausted and why she would catch a cold and it would last 3 weeks instead of 3 days like everyone else.
We are where we are today because of 4 things:
DILIGENCE... with continual research, with the doctors, and with SSI.
DETERMINATION... to help our daughter live life.
PERSEVERANCE... by NEVER giving up and by NOT accepting negative answers from doctors, from school or from the SS office.
PATIENCE... in realizing that things take time.... as do results! We have learned that it is not always obtaining the answers as to what the "problem" is that require the most patience but rather the "treatment" of that illness or how to live with it that does.
In August of 2000 Krystal was diagnosed (dx.) with Hashimoto's Thyroiditis (Hypothyroid) and Vitiligo (pigment loss); both are autoimmune diseases. That same month she became ill with mononucleosis, which lingered for months. Instead of feeling better over time, she began to feel worse. After many doctor's visits and much time spent researching on the internet, at mom and dad's insistence, specialized blood tests were performed.
On April 11th, 2001, at the age of 15, Krystal was dx. with Autoimmune Addison's Disease; a very rare endocrine disorder (affects aprox. 1 in 100,000 people) which has caused her adrenal glands to quit working. Most people are dx with Addison's in their 30's, 40's or 50's... not as a teenager. The combination of autoimmune illnesses Krystal has is classified as APS type II (Autoimmune Polyglandular Syndrome) which basically means she has more than 2 autoimmune endocrine diseases.
Vitiligo in itself is not that rare and does not cause Krystal many problems. She is fortunate in that her Vitiligo is minimal and not very noticeable; but to have it in conjunction with Addison's IS rare. Only 10% of Addisonian's also have Vitiligo, which equates to only 1 in 1,000,000 people have both Addison's Disease and Vitiligo.
So Krystal literally is our in a million girl!! :-)
Since her initial diagnosis of Addison's, Hashimoto's, and Vitiligo, Krystal has been dx. with Insulin Intolerance/Resistance, P.O.T.S. (Postural Orthostatic Tachycardia Syndrome), chronic migraines, Gastroparesis, Tarsal Tunnel Syndrome and Osteopenia. She is also monitored for cataracts because she has "speckling" in/on her eyes, partially due to the continual need of increasing her steroids and now must deal with repeated bouts of kidney stones (3 episodes in 7 months) which her doctors are attributing to a couple of the meds she MUST take for her Addison's, migraines, Osteopenia and Gastroparesis.
Krystal was dx. with a DVT (deep vein thrombosis) in Nov., 2007 which was the result of a PICC line gone bad... the radiologist said almost the ENTIRE length of vein where the PICC line was is one huge clot! Please read the recent journal history for details on this.
Krystal is an inspiration to all who meet her. She has such a positive attitude and outlook on life. She of course has down days... who wouldn't!?! But overall... her upbeat attitude amazes everyone!
Our family is so blessed. We know the bond we share with one another is a unique gift from God and we thank Him each and every day for all of our family and friends.
Krystal's friends and our "extended family" are a special gift in themselves... words can not express how grateful we are for your friendship and love.
She... rather WE are so very fortunate to have such total (and unconditional) support from all of you.
Not everyone understands Krystal's Addison's Disease, but that doesn't stop any of her family or friends who cares about her from being there for her 100% and for this we thank you!!!
One last thought...
Always look for at least one positive in every situation you are in... Krystal does!!! Do not focus on the negative because that will not help your situation. Between Oct. 2007 & Jan. 2008 Krystal has been hospitalized 6 times and was in the Evil Room (ER) a few more, yet every time she found something to be positive about... usually it is educating nurses about her health issues and her Addison's in particular; which helps them the next time they have a patient with Addison's.
Please check out & consider using this link www.GoodSearch.com when looking for information on the internet. Every time you use the site, the National Adrenal Disease Foundation (NADF) benefits by your choosing them as the recipient! How cool is that! The more people who use the site, the more money that will go to providing information, education and support to persons with adrenal disease via NADF. Melanie and others at NADF work very hard on our behalf, and we need to do what we can to help NADF!!
Journal
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
Read Journal History
Hospital Information:
Links: http://www.nadf.us/diseases/addisons.htm National Adrenal Disease Foundation
http://www.aarda.org/ The American Autoimmune Related Diseases Asociation; Great site for autoimmune Q & A info.!
http://www.rarediseases.org/ National Organization for Rare Disorders
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