Journal

Journal entry by Debby Larimer

I just summed up the journey in "MY Story" but now I will share where I am at today.

Tomorrow I will be home from the hospital for two weeks and I am pleased that I am more stable. I have also not had an infection for over two weeks so I have been able to stay on the Cellcept.  This drug suppresses my immune system and when I have an active infection I need to be off of it so that my body can fight the infection.  The problem is that when I am off immunosuppression my disease is exacerbatted and my body is actively attacking itself at a cellular level.  The longest I have been able to stay on these drugs since March has been a few weeks before another infection emerges.  Then while on the antibiotics I need to be off the other.  In order for it to reach it's therapeutic level I may need to be on it for months at a time versus just weeks.   
This summer I have been amazed at how well the help in the home has worked out.  Having the attendant care program from the Center for Independant Living and the other supports such as nursing and therapies that are in place have made it possible for me to stay home.  "Home" may be changing because this house went on the market last week and we are hoping that a move to the Lehigh Valley can take place (the sooner the better).  There is better acute care there and I will be closer to Hershey Medical Center and Chris who can help me with the children.
I had some physical therapy this morning while the children were at church and the therapist was able to help stand me up holding onto the walker for almost 20 seconds without my knees buckling.  My visiting nurse, Amber has told me that my lungs are diminished and there is concern about them collapsing at the bases.  I am awaiting a return call from the Critical Care Pulmonologist on what tests he wants to run to check the status of my lungs.  I hope either he or his nurse will call me this week.  I have two visits scheduled at Hershey this month and I hope I will be strong enough for the trip.  I also will see the family doctor this Tuesday.
I am trying to stay strong and it is hard not to get discouraged at times when there are so many variation in my abilities.  This morning I needed help from the therapist transfering from the bed into my power chair and then this afternoon when Chris arrived (from Allentown) I needed less help....now tonight my neck muscles are weak so I am very wobbly and I am struggling to move my legs.  I never know how to plan or predict.  I have my bed in the dining room and I am trying to be out of the bed and in the chair for a longer period of time.  I want my sitting endurance to improve. 
Sometimes I hope that I will wake up and be restored back to the activity level that I once had a couple years ago.  This morning I cried when the children left for church because I wanted so much to be going as well.  I can't take that risk yet because I want to remain infection-free as long as I can and I also need to choose how to use that energy that I am granted for the day.  It matters so much that I am able to do what I can but sometimes I desire so much to be out of this house and involved more in the community and part of life outside these walls.  On the fourth I wished that I could take the children to a fireworks display like we did in the past.  I am trying to be thankful for what we can do together, but there are losses that I experience and many of those losses have to do with my changing abilities.

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Journal entry by Debby Larimer

Sleeping has been a real struggle for me.  Much of this is connected to the use of steroids and also the difficulty I have with breathing.  Sometimes I wake up gasping for air and with intense pain from the overworked muscles in the chest and diaphram.  The Myositis affects so many muscles that I once took for granted...not even realizing that it took muscle power and energy to breathe and simply move.  At the hospital recently they also did a 4 day inpatient stay of IV infusion steroids and the side effects from that often leave me spinning.
 
On top of that I feel the huge responsibility of keeping on top of being a parent and having to try to keep things running.  I need to rest at night and let Go and let GOD.  I DO HAVE help with the home, my care and the children but at the beginning and end of each day I know that I am the one who needs to make the decisions for the children and take care of them the best that I can. 

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Journal entry by Debby Larimer

This was a rough-er day than I had expected.  By the time the Occupational Therapist came at 11:00 I felt as though my energy was decreasing and my weakness and pain was increasing.  I really enjoyed this therapy session because I recognize how many people I have met because of illness and pain.   I get to know so many dynamic and caring people at the most vulnerable times and the circle of people in both the children's and my life has expanded.  Yes I would rather socialize on more equal levels like I used to and desire to again, but I still have been enriched. This dis-ease is a part of the journey God has given me and I am TRYING to live each day fully. 
One thing I also notice is that I hear this question a lot from therapists, nurses and doctors...."on a scale of one to ten what is your pain?"....well this has changed for me after having some serious surgeries, tests and entering new levels of disease.  What used to be a 10 (worst pain in lifetime) would now be lower and the new ten is something I probably would not have been able to bear a few years ago.  I say this because I continue to be amazed at how God prepares you for what may be ahead....  I have friends that I communicate with that live with the same illness who I am sure can relate.  I also know of some who have lost the battle with this disease.  I guess when I am sitting here tonight struggling with the more profound weakness and intensity of the pain that I can be glad that I am still able to battle it out and be that spectator in life.  
When I was first noticing the weakness in the beginning stages of the disease it stood out dramtically but now compared to the level of weakness it seems like strength I wish I had now.  When walking with a walker seemed like weakness, I now wish I was able to do that.  My hands struggle to hold a fork and a ring on my finger feels heavy; and pumping my ankle takes a lot of concentration. 
As a mother it feels like I am letting the children down by not being active but I am trying to convince myself that I still have a place in their lives when I still read with them, play a short board game, watch a movie or TALK.  We do a lot of talking together that perhaps I was too busy to do when I was very active.  Speaking of active...when I meet people for the first time I often tell them that I USED TO...rollerblade 10 miles, I was a long distance runner, diver and swimmer, etc. and I think I do this to prove I USED TO be someone.  I told the Occupational Therapist today that I pulled away from some friends because I do not want them to know me this way and she said that I should still invite relationship because people can know me where I am at.  But I also know that there are a few people who got to know me as a needier person and needed to pull as well.  It is not easy to be friends with someone that does not seem to get the "healing" that everyone prays for so it is natural to not know what to say or do for both the person that wants the healing (ME!!!!)or the one who has stood by for so long.
My attitude and mind-set, about the standstill with remaining sick without noting the hoped-for improvements, is not so good .  As I was confessing this it came to me to pray for a new heart-set (vs. mind set).  I hope it will come soon.
Tonight I am in a real stuggle as I feel a sort of a decline from last week, yet I know that I am also well enough to be at home. ..so that is good.   I just always am faced with the fear of being able to keep up at home and fearing that I will lose more than I gain.  Some of you know that I needed to be in a nursing home when rehabilation was not happening and I did not have resources in place at home.  I have more help now but that fear is often there and propells me to be working hard to get the children and I in an environment/home where I can better care for myself and the children (all on one floor).  I also can not WAIT TO TAKE A SHOWER.  Since I can not do the steps I need to take "bird-baths" with one of those lovely pink hospital basins. 
Enough said!  Thanks for reading this!

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Journal entry by Debby Larimer

Highlight today was using the powerchair to go outside with Brittany and Emily.  I felt happy during this time with them :)

I saw my family doctor today and he has been there for our whole family throughout this process. The steroids are causing my blood sugar to go up and I have needed coverage when this happens.  I am hoping that this will level out.  Steroids are not good when you are on them for a long time.  We also discussed heart related concerns.
The transfer in and out of the car is made easier by this transfer board that is like a "portable sliding board" that helps me get from point A to poing B with more ease.  
My occupational therapist will also be bringing someone from Susquehanna Mobility this friday to "fit" me for better support so when I am up my head and the trunk of my body will have better support.
So right at this moment, instead of feeling discouraged about what I cannot do I am thankful for "sliding" and "gliding" (in powerchair) 
People are helping me find avenues to explore greater independance.  I need to utilize these tools to hope to live out the day to it's fullest.   



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Journal entry by Debby Larimer

The nurse was here today and she could hear that my breath sounds and air flow is diminished in my lungs.  She called the doctor and will see what the pulmonologist wants to do.  Bloodwork was also ordered by the rheumatologist and the nurse can do that here in the home on her next visit.  I will wait and see what happens and I am just hoping my lungs will recover.  I have had a lot of difficulty with my lungs and the changes can take place very rapidly.  When my lung function was last evaluated I had 50% capacity.  That is like functioning on one lung.  I use 3 liters of oxygen and my saturations are staying up but I still have to work very hard to breathe.  My lung status has been an ongoing concern.  Changes, infection, collapse, enfusions etc can crop up and I am screeching away from my home and children.

There are many variables with muscle control and movement and sometimes it feels as though there is a breakdown in communication with the muscles and I have to wait it out until I can make the next move.  I am in a difficult spot today perhaps because of overuse yesterday or activity at a cellular level.  The therapist came and she did some range of motion.  I had an increase in activity yesterday and I never know how that will affect things.  I have to TRY to challenge things or else I feel I will not be working in an upward manner.  I feel I am always fighting resistance....in other words I want to go up but something keeps pushing me down.  The therpists are explaining energy conservation.  How to use it and save it.  The balance is difficult to discern.  When to rest, wait and move.

I am more emotional when limitations are there because I never know what to expect.  The randomness of illness can really get me down.  I am very tired, very tired and it is not the kind of fatigue that allows me to sleep.. It takes a lot of work to rest.  I have been trying to get a period of sleep at night but i have not had good success on my own.  I can not use certain medications for sleep because they can further suppress my breathing.

I hope that I will begin to feel stronger today.  In certain situations I am powerless over this disease and I have to find ways to work with it.  I do not want this disease to define me.

Please pray that my lung status can improve
pray that the right connections will be made with the right doctors and at the right time
pray that we can find a the right housing and that this can happen while I am stable
pray that sleep will come easier

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Journal entry by Debby Larimer

The last few days I have been trying to think of what to journal as far as progress, changes or healing and sometimes it does not come in the ways that I expect.  Like everyone, there are the ups and downs in a day.  It just seems that sometimes things dramatically change.  I am managing to maintain at the level I am at and that is a plus.  I am tolerating the treatment plan and doing what I can each day to look for new ways to do activities of daily living.  
In the past, I expected a gradual incline of progress but now I am able to accept that there may always be the peaks among the valleys.  I am trying to utilize the good periods and prepare for the poor periods.
I had a longer period of sleep friday night and then last night I struggled through such tightness and pain with my breathing and did not sleep until the birds were chirping.  The new humid weather may be a factor in the increased shortness of breath.  I am still working with Hershey to make adjustments on how to address it all.   Sometimes I have to accept that there is not always a way to relieve the distress.  I struggle with the intensity of it all and often hope that something will make it all go away or improve.
I had a nice day yesterday when friends visited from Allentown and we celebrated two birthdays.  Laughter is a good medicine and there were happy times.  I have had other visitors this week that turned my heart toward joy.
We have had no showings to sell this home and I am not sure what will happen, but time will tell and I keep asking God to keep us in the center of His will.  Hudson Taylor, a well known missionary, said "God's work done in God's way, never lacks God's supply"  I am thankful that God has been very faithful everyday in the keeping and caring of the children and I.

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Journal entry by Debby Larimer

I can no longer live in a larger home with high maintanence and more than one story.  We were making it work (praise God) but it is getting more and more difficult.  When I was hospitalized throughout the month of May and then again in June the decision was made to TRY to move.  The house has been on the market for almost a month and there has been no showings or activity so I am discouraged today.  Many have validated my need to move and have offered their help in getting us ready.  We have packed boxes and I have made many phonecalls to prepare for the needs that this family will have in the area we are planning our move but we need to sell first.  The other discouraging and concerning matter is finding a home that will meet the needs that we have.  The realtor in the new area said finding a home for me will be like looking for a diamond.   I need to be able to get a wheelchair in and out of the house and rooms, 3 bedrooms, one level, and all within a price range that a single/non-working mother can afford.  A few have showed up that would have possibly worked but they sold.  I am believing that if moving is in the center of God's will then it will happen at the right time.  I SAY this but I am still very worried about how, when and if I can manage to actually do this...with the condition or things.

I have successfully been treated for one month with the new auto-immune drug.  This is a victory and hopefully it can reach it's therapuetic level.  I will be having some labs done tomorrow to make sure the meds. are not creating any unwanted side effects.
I will be continuing my therapies today and will see the nurse tomorrow.  I am scheduled to get further evaluated for mobility needs.  The appointment last friday was one step closer.

I am taking one breath at a time and managing.  I still need to be able to sleep at night.

I will be going to Hershey Medical Center on friday for testing to follow-up the thyroid cancer that I have been monitored and treated for since last August.  My surgery was in Sept 08' and they will check to make sure that there is no activity in the glands or area.  These trips are very difficult for me because it takes 2 1/2 to 3 hours each way.  I travel in a medical transport and I am able to take an attendant with me.  If we move to where it is planned, I will only be an hour or so away and this will make it easier.  I have another trip to Hershey on July 29, Aug 11 and more after that so I would appreciate your prayers for the tests and treatment I will be receiving.

THANK you for standing by me.

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Journal entry by Debby Larimer

I am so moved by the comments and messages of support I get.  You do not know how much it means to be CONNECTED to people.  I feel very encouraged and feel that I can still have relationships with people that want to care and share this journey with me.  It helps us to get to know one another well.   

This day started out with the hope of a good day but the course it took was more concerning.  I started with a fever later this afternoon and I am weak"er".  I am not noticing a sign of infections so I am still with hope.  My muscles are more fatigued and my neck muscles are weak making my endurance being up more difficult.

I came across this verse that I never noted before today.  It is in Job 2:10b.  It says "Should we accept only the good things from the hand of God and never anything bad?" (New Living Translation) It gives me a broader perspective beyond trying to find personal comfort and helps me to see that even though God is able to rescue us from suffering that He also allows it.  I can accept it and grow with it or keep wrestling with all the whys?  I also need to look away from the bad I see coming out of diseases and look at the good that has come because of it.
One blessing I have received is the ways people have helped me at the most vulnerable and difficult times.  I have learned to trust people and receive from others in ways I was too scared or proud to expereince before all of this.  

I am hoping to get some rest and praying that my health is restored to a managable level for tomorrow   

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Journal entry by Debby Larimer

I am so perplexed at times when I have such sudden declines that have no direct connection.  Today my hands are very much affected and typing is a task right now.  I felt blessed with some sleep last night but awakened very weak this morning.  The left side of my body which is the non dominant side seems to become more affected when the weakness is more profound.  The heaviness through out my body makes every move so much more difficult and I am working so much harder at doing what I have to do to get some motion.  I never know how long these flare ups will last or where things are headed.  I have to just wait and see.  I feel that I have been very stable for the past three weeks and I am thankful.  The occupational therapist came and was very helpful.  She did something called myofascial to my arms, hands and neck and this helped to stimulate things within the muscles.

The heat makes breathing more labored but I am taking precautions and thankful that I am staying out of distress.

Tomorrow I am going to Hershey for the followup thyroid cancer testing and I am not feeling as concerned about the testing and hoping for a good report.  I have begun to not like to see "hospitals" and seeing them gives me a sinking feeling.  I am hoping that I have strength for the trip and that there is no evidence of cancer or suspious growths or nodules!

Please pray for strength within this weakness and the courage to want to keep up the day to day fight.

Thanks for letting me share my story here.  It helps me to know that it is ok to share and that others care enough to listen and read on.

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Journal entry by Debby Larimer


I made it to and from Hershey Medical Center. The doctor should have the test results next week.  I am exhausted and hoping that rest will come. 

I started with a respiratory infection and the on call doctor stopped the Cellcept (Immunosuppressant) and called in an antibiotic. I am hoping I can fight it off.

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Journal entry by Debby Larimer

It has been nice to be back in my home where I have been able to rest.  Home and community is always the best place to heal. I’ve been a bit more tired and I’m still experiencing tightness and restriction with breathing.
I  got a call from one of the doctors I saw while in the hospital. She was informing  me that one of my cultures came back indicating an infection that is more common in patients with underlying health concern and or immunocompromised. She ordered an antibiotic and I will meet with my family doctor via video visit.
The home nurse I see from LVHN came by. When she listened to my chest she noted  decreased breath sounds.. .This is not a new finding and I had a battery of tests in the hospital to check this but it does concern me because of how it’s making it harder to carry out my routines. I’m praying it can improve or stabilize.. Time will tell.  I have some pulmonary out patient testing that will take place when the hospital reopens. I would imagine they have enough test results on me.
This week I’m scheduled to meet with Palliative care as well and my pain management doctor next week. I will also travel to Hershey at the end of this month for an out patient test for options to treat my neurogenic bladder and the persistent pain.. I know that if I don’t need to go into a visit, I would much prefer video visits. It really helps to not have to arrange a ride, pack up my chair if I don’t need face to face. My family doctor explained that getting to some of my appointments will also help to get back into routine after the pandemic so she wants me to do face to face and use video visit if there are needs in between. 
I’m down as I’m still trying to find a way to digest and recover after this last hospital stay. They are a great health network and I appreciate the care but each stay never gets easier and bouncing back is hard especially with this infection. It also seems to remind me how much harder some medical challenges are to fight.. Too many tests and I’ve been unraveling a bit since I’m home. The uncertainty is stronger and I believe God can “do more” healing. .Eph 3:20 is a big verse in my recovery but the struggle is real.
I believe that God can do anything because He’s carried me far and my quality of life is good right now. It’s a battle I fight but treatment is hard and getting complicated again. I know my drs at LVHN will monitor things until my appointment with the Sarcoidosis specialist at Hershey in about 6 months. I am to call Hershey to see if I could be seen or video visit sooner than November, but actually the additional travel, arrangements, tests is daunting at this time. but it is life. Yet I have always found a way or been able to make it work with the accommodations. I need to work on fighting my current battles and get on recognizing, I’m fully alive. Most likely I will see a Hematologist there for platelet counts and the Sarcoidosis that is now in my liver and spleen. It’s overwhelming how intricately complex the human body is. After these newer findings I see how we can take for granted our organs and all the cells, vessels, nerves etc that work.  I am truly amazed that God is still the ultimate force holding my body and strength together. This illness systemically has invaded my lungs, my lymph nodes, skin, eyes, my central nervous system, spine, pelvis, kidneys and now my liver and spleen. It has affected my heart but I’ve also have areas that have stabilized and have shown some improvement. I think of Psalm 139:5 in a different way when it says...”You hem me in behind and before, and you lay your hand upon me”  He knows me so intricately.  He has saved my soul and brought renewal and healing within.  He loves me. He has blessed me and has redeeemed the pain of my past. He has given me joy and a peace. I am in awe of how He has held me together and healed me time and time again. “He heals the brokenhearted and binds up their wounds..”.His power is miraculous. My heart is thankful for how He has extended my life...how can I ask for more????? 
Years ago I read a book by Andrew Murray and I have been thinking more about what grace is.  The book is a classic written many years ago called Absolute Surrender. It has left an impression on me. Maybe you are familiar with it. I still remember when it took root in my heart. I highly recommended this classic if you haven’t read it already. One theme was that it is not about me trying to get closer to God, but His desire to get closer to me. As I lay my life, my goals, my desires, my expectations down and ask God to help me surrender, it allows Him to fill, teach and He can do the more. For me personally, what God has done inside me seems to trump the questions of why I face all of these medical challenges. 
When I fall short but He is teaching me again how to remember the work of the cross and lay it down. 
Of course I want healing, more restoration. But I’m learning to trust the Father that has pursued me, loved me and urges me to say....I want your will....because it’s better
I know I shared this before but I was very driven.  I used to think and see that being fully alive and doing doing doing and striving to somehow be in the winner’s circle, 
I was out to prove that I could be more. Some of that may have been pure, but I was not trying to prove it to other people, I was trying to convince myself of my worth. In fact I would try to stay so active because I think I was trying to get as far as I could away from myself.  I thought that the more I did, the better I would feel. I was trying to run away from emotional lies. I was running away from things yet “Debby” always followed. I got help with my emotional baggage. I couldn’t do it myself, I needed to believe and grasp truth.
 Now I still “run” the race but I’m looking and longing for a different finish line....an eternal goal, but I still need to empty self and fill with God’s goodness. The obstacles make me and my family weary but God provides the strength. Regardless of how many years I live, I hear in my mind the lyrics of a MercyMe song Almost Home..... It says toward the middle that “I know that the cross has brought a Heaven to us but there is more to come....I’m almost Home.”  A doctor that knows me well used the phrase....we will need to discuss your prognosis and then changed the subject and I’m glad because God only knows.
I need His strength in this moment and I won’t get the strength for the next until it comes. Because of His grace I can focus on what was (done) on the cross and live abundantly but what I (do) won’t get me to my heavenly home ,.i want to “do” in my response to His love  
I’ve been trying to learn more about God’s grace. The topic continues to come up...... One of the more recent books was Anything by Jennie Allen and believe it or not, I saw a documentary called American Gospel that clued in on how far we have strayed from the gospel. Also as a Zoom Bible study participant.
This is what I was understanding....Grace is not earned. We could not give enough or pay enough. Salvation is a gift we receive and believe and desire to walk out. We can not earn our way through working and striving, or ever doing enough. I want to live a life pleasing to Him and grow in my personal relationship but I will sin imperfectly. God wants to help me grow from my mistakes. I will never be perfect, so by pretending to work hard to be and or do it perfectly can halt God’s ability to move in our lives. He wants to heal brokenness, but when I was running I wasn’t in honest communion about what was happening in my heart.
My prayer right now..
when I am weak, make me strong in the grace that is in Christ Jesus.  Crush false guilt and self contempt.  Give stability when we are afraid.  You help me, Lord because you are gracious.  Thank you for your blessings, which alone give me and these friends strength.  Amen.
Friday, Jenn had an eye doctor appointment and she has some additional steps with her eye care. She will begin artificial tears as well and she has a condition in both eyes called Meibomian Gland dysfunction. It’s something she will need to use warm compresses and wash with babywash around her eyes a few times a day to prevent it from spreading or getting worse. She will also have more oral surgery on Thursday. If you could pray.  It’s a challenge to guide her toward good hygiene and understand the importance of having a routine. This is hard for all four to shift from needing to depend on others too, and moving toward accomplishing tasks that will help confidence and social acceptance. 
Britt has begun meeting with a Christian who is a psychologist. She has made a lot of progress with supportive care. She will be returning to work as a cashier when they assign her a schedule.
It doesn’t not look like Geoff will be returning.  Instead he will be working with OVR (office of vocational rehabilitation) He was in this program before but this time around, he will get some support with pursuing some of his interests. Pray that he will be self motivated to take care of some basic areas of daily living.
Emily is now working as a direct care worker in the home but is also looking for an area of interest to pick up on, once the quarantine issues are resolved.  She is busy with her art and crafting. She is helping out at home.
Thank you for the prayers or thought about us as we try to work better together to maintain our home.. God is answering.

2 Timothy 2:1 – You then,..., be strong in the grace that is in Christ Jesus.

Almost Home By MercyMe
Are you disappointed

Are you desperate for help
You know what it's like to be tired

And only a shell of yourself
Well you start to believe
You don't have what it takes
Cause it's all you can do
Just to move much less finish the race
But don't forget what lies ahead

Almost home
Brother it won't be long
Soon all your burdens will be gone
With all your strength
Sister run wild run free
Hold up your head
Keep pressing on
We are almost home


Well this road will be hard
But we win in the end
Simply because of Jesus and us
It's not if but when
So take joy in the journey
Even when it feels long
Oh find strength in each step
Knowing heaven is cheering you on

We are almost home
Brother it won't be long
Soon all your burdens will be gone
With all your strength
Sister run wild run free
Hold up your head
Keep pressing on
We are almost home
Almost home
Almost home


I know that the cross has brought heaven to us
But make no mistake there's still more to come
When our flesh and our bone are no longer between
Where we are right now and where we're meant to be
When all that's been lost has been made whole again
When these tears and this pain no longer exist
No more walking we're running as fast as we can
Consider this our second wind

Almost home
Brother it won't be long
Soon all your burdens will be gone
With all your strength


............

“Anyone can get to Heaven, no matter how messy the life. And by the same token, anyone can be kept out- regardless of all his/her fancy goodness” ~ @jenniesallen 

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Debby’s Story

Site created on July 5, 2009

Welcome to this CaringBridge website. It is created to help me journal and record my journey as well as keep friends and family updated since I have not traveled this road alone.Please click on "JOURNAL" and visit again to read the latest entries, photo gallery, and write a note in the guestbook.What is Sarcoidosis? It’s a disease of unknown cause that leads to inflammation. It can affect various organs in the body. Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger. These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.
April 2019~
For me it began in my lungs, then a few years later my lymph nodes and central nervous system. I also had it with skin and my kidneys and neurogenic bladder are where I have struggled.with spasms, numerous kidney stone surgeries and my eyes have been affected more by Sjögren syndrome it seems...more of auto_immune soup with many symptoms. My doctors at Hershey focused more on the neurosarcoid, but after they released me to hospice, I learned after a year that God was going to give me more time.
Recently I felt I was making some progress after this 12 year battle, . Then when I came off of pain medicine, Methodone slowing last year, I started having changes with my heart and my doctors said perhaps the medicine was masking some of my sensations or symptoms . My family doctor even sent me to the ER by ambulance recently when I arrived for my appt, the nurse took my heartrate, pulse and checked if my O2 was correct. They can usually get it down with fluids but I also get confused and have burning sensation and skin gets very warm to touch. I’ve had heart problems in past but my doctors feel it is more from my lungs. I’ve had several congestive heart failures and pericarditis and a heart virus:endocarditis. I had a period of progress last Fall and I attributed it to getting off some of those meds and with physical therapy I am learning to use the walker. My setbacks since the new year are hard to fight back each time though.
I saw a new Cardiologist and a fellow dr yesterday and they ordered quite a few tests and they mentioned cardiac sarcoidosis. They also said that it may just be palpitations that may need medication or inappropriate sinus tachycardia. They did see changes in my heart within the past 4 months when it put me in the hospital or ER. I’m hoping there is a simple explanation .
I am trying not to worry and rely on the faith that things may unfold as related to another problem. How are we suppose to keep fighting when it feels like the odds can be against.
As a single mom of 4 special needs adopted adults who live with me. 3 of them, siblings,were diagnosed with Myotonic Muscular Dystrophy in the past few years. It has an adult onset. They began being dx in late teens and are all in 20’s. They are amazing and sometimes I see how much more horrible this disease is for them. My oldest recently had a pacemaker deflibulator placed and I had her sleep in a recliner by me or with me because it was the only way I could care for her initially. I’m so scared they will lose more strength and I won’t be able to care for them. God has miraculously kept us together and I want to be there for them, like they have helped me over the years and struggled through with me.
I do have attendant care, aide, and nursing so that helps me but this setback with breathing and heart rate is difficult to fight against.

Jan 2011. Please see JOURNAL to see where I am at on this journey at the present time. Four years ago (June 2007) I began a precarious journey with my health that has weakened my body but strengthened my faith. My lungs, muscles and lymph nodes is where I was first dx. with Sarcoidosis. I have also had heart related concerns as well. My spinal cord and brain are now where the disease has advanced. I am currently undergoing treatment for Neurosarcoidosis and neuro-muscular involvement affecting my central nervous system and motor function. The nature of this is a combination of nerve/ auto-immune diseases called Sarcoidosis (clustered immune cells forming in lungs and muscle fibers) and Myositis (body attacking many muscles). Because my lungs began to decline so rapidly it caused pulmonary fibroisis and interstitial lung disease and some heart related concerns. I have had pneumonia over a dozen times in the past few years and I have needed to be hospitalized too many times to count. I have been scared as I have been life-flighted and whisked away in screeching ambulances and have needed the help of different specialties and medical centers. My weakness profoundly affects my mobility. My muscles fatigue quickly. The muscles in my chest are also affected so breathing is very difficult and I currently use oxygen around the clock. I need higher levels at night or when sleeping. During more difficult flare-ups I have trouble swallowing, holding my head up, and controlling my neck muscles. I experience pain, tremors, spasm and muscles contracting. Another current health concern is the follow-up for two forms of thyroid cancer that were discovered in 2008. I have undergone surgery, tests and treatment. As a single mother of 4 teenagers with some special needs of their own, we have had to get help from others to overcome some difficult times of separation and crisis. One hospitalization lasted 10 weeks and this was so painfullly hard for the children and I. We recently moved closer to the hospital treating me and to be near family support.After numerous biopsies such as open lung, deep tissue muscle, lymph nodes and skin... my pathology has been sent to other hospitals and they have begun developing more of a treatment plan rather than treating it blindly. I have been treated with high doses of immune suppression and steroids. I made some remarkable progress, but then had the disease return with more complexities and complications. Because some of the medications used to try to stabalize are immunosuppressants they work against my ability to fight infection so I have battled back to back infections and I have to take extra precautions. I need to conserve my energy for daily living. So far my declines have been of a progressive nature but I continue to hope that with treatment I can improve. Because this disease is symptomatic, chronic and a limiting process, I am thankful that I have help to still fight the good fight and that I can continue to navigate the storms and embrace life to it's fullest. At the end of each day I have been able to look back and see God's help and faithfulness. He is choosing to sustain me and I sense His intervention and hand in healing. My life has been enriched with so many meaningful relationships and experiences. My cup overflows. Although my body is in a war, inwardly I am being strengthened in the unchanging fact that God is good and His faithfulness will never change. Visit the following websites for information on the core diseases I wrestle with

http://www.royalfree.nhs.uk/neuro.aspx?top_nav_id=1&tab_id=795

http://www.stopsarcoidosis.org/
http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm
http://www.facesofsarcoidosis.org/Home.html I am featured on this site

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