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 I am featured on this site

Newest Update

Journal entry by Debby Larimer

Our church is close to our home and I am so thankful for the way they abound in love. I felt this acceptance and love.  This past week, I was able to get the batteries replaced and recharged in my powered wheelchair and we all attended a worship concert at church..  It has been awhile since I made it to the church.. I didn’t realize how much I missed the fellowship. It was hard because my pain with breathing was difficult.  I could not sing the way I wanted because my lungs are taxed. You just don’t realize the capacity your heart and lungs have until, it’s gone. I only interacted with a few people but at the close of the concert a friend invited me to the altar.  The last few days I have been very discouraged after my recent hospital excursion.  I just wanted to be around hope and away from the discouragement that was lingering on. When the concert was concluding, they invited people to a time of prayer and some dear friends and my children prayed over me.  It felt more like God uplifted my Spirit reaffirmed that I was in the right place. The words that were prayed were so accurate. I tried to drink in the healing words and prayed for healing to come and Suffering to end.  I see Gods healing in my life but I do not see my suffering as mistake nor do I feel, because Im sick that there is an absence of God’s grace.. he’s present in my journey, my pain, as well as any healing.  As these precious people prayed, I could feel our lives overlap.  It is Inpain that God is close., .Psalm 34:18, “The Lord is close to the broken-hearted and saves those who are crushed in spirit” My struggles and others needs there at the altar were authentic and real. No matter how many times many times I pray, “I am healed,” I recognize God is lisRoll away sorrow, take away pain..lord I want to be free

The weariness was a struggle to go tonight 

I relate to others struggles and pain.  I feel their pain as I relate in the only way that I can. I see others who are conquering bigger giants and it helps me often put things in perspective, My heart of hearts holds on to hope because I see all in all that I’m not alone.  God has not forgotten or left me on my own even when that feeling creeps.  Whether physical, mental or experientially, some days (or seasons) are tough.  With my life experiences and battling this disease for almost 13 years, I have learned so much from each of the people I have met or connected with. I am so grateful for that, I just want to get to a place where I can be of use again. I desire to be connected in ways that will put me back in the roles that brought me much joy in community. I am a people person and I miss those connections that help with a sense of belonging and community.  I am glad that I am here and able to express my desires for a life more abundantly. Yes I’m one of those annoying people who writes my feelings in long drawn out ways, but God Never wastes our pain or the journey. Jesus is present I Suffering and pain. I want a God to take it all away and I do believe that God is indeed healing me.  I am nothing without Him, my security is in the work of cross.  

I know I posted the other day about my stress test that landed me in the hospital.  Since that day I am wresting because I am just so tired. I want my body to bounce back. I want to be transitioning from years of struggle and high needs to the Debby I once was. I continue to want to step up on the precipices of this life and regain my confidence and rise above...not fall backwards.  I want this for my adult children too, I want God to do this for others who are hurting. It’s hard right now to tell myself or others that He redeems us from the pit, buts it’s true. His sovereignty can be trusted even when my heads not camping there. 

 My heart issues seem to be connected to my lungs and restricted breathing (and Sarcoid). So far there Since coming home from my hospital excursion the other day, I went from finding those miracle moments to a debby downer and downEr..

I really dislike hospitals and when you have two cardiologists that tell you to go, what are you suppose to do.  I feel like it did not solve anything, except to tell me what was “maybe” happening. Some things I don’t want to know what’s happening either! I just want to be HOME. I did breathing treatment there and here but my lungs are struggling. I was directed to consult with my critical care pulmonologist soon and family dr. The symptoms and diagnostic codes pile up and you start to feel list in the system, along with seeing your children in the same situation.

Let me interject something positive cortisol levels came up, making it possible to reduce the steroids after many years. This was a good message from my rheumatologist just after learning this, my urologist also called Friday morning to tell me that there is not much more she can do to help me, except what we have tried. The new medications I wax to try, no longer seem appropriate. She recommended not pursuing the new medications.  I have neurogenic bladder and kidney problems. She said the nerves and muscles have to work together and they are not. This catheter also feels like a very painful ball and chain socially and medically. I’m stuck with it and I don’t like it. I continue to get infections and I'm colonized with Pseudomonas which isn’t uncommon when you have spent time in hospitals and have a catheter for past 8 years and infectious disease consults with a few other doctors I see to determine which ones to treat. Antibiotics are now more limited because of drug resistance. I know that with deleted immune system the infections can be stronger.. I have a subrapubic catheter in lower abdomen and I spasm terribly and when they come on I have also can be incontinent of bowels. This has been hard with the nerves misfiring and the changes that have happened over the years limit me. This doctor of 7 years first suggested going to a diff hospital farther away, like Philadelphia,

 I traveled this road during the first 6 years and I no longer desire to travel again....that ended with hospice.  I was so sick and travel took a toll on me and my drivers. I am the only parent and I need to be home and save my strength to be there for my 4 adult children with their own special and medical needs. I have no family that can drive but I do have . My urologist mentioned a radical surgery to have my bladder replaced with a bag this morning and I refused for now because for me, the invasive surgeries over the years have made things harder for me to recover or more complications. I don’t want to try anything that is not of necessity.i do have surgery next month to expand my esphogas and another GI procedure, then in Fall the urologist wants to retry the procedure to paralyze my bladder again.

When I was dx with Neurosaroid at Hershey they discovered damage my spine and from that point my brain gets messages mixed up and everyday is different. The majority of the pain I experience is nerve related yet there is muscle wasting and autoimmune soup.. None of us are immune from hard times or pain.  When it is all so big inside, (the giant, and the fear) It’s a struggle. He says He is bigger. I wish I could tackle this now.

I feel like I was making steps forward and now I’m flat again trying to recover  I know things could be worse but that doesn’t help right now

When at hospital they were primarily concerned about my lungs and heart but couldn’t do anything acutely.  

Just as sure as the sun rises every morning, it breathes new hope and offers a fresh start every single day. Redeemed. Loved. Called. Restored. Cherished. Strong. Joyful. Hope-filled.

I am really grateful for a lot and fortunate to be where I am...with children and God has 

. We may not understand it all this side of heaven, but God is always faithful. And He can do in just a moment, what it might take years for us to work through on our own. God’s power is still greater than the works of darkness and far stronger than anything we may face here.

Through hard places, God brings us to deeper humility and dependency on Him. 

provided for us all these years, but I can’t get out of this funk.  Lord lift me and any of my friends out of this and into a greater purpose and blessing up ahead. Restored. Redeemed. Renewed. Repurposed.

How can you relate maybe or how do you fight discouragement?  Please share with me your helps and truths, how you persevere?

The light shines in the darkness, and the darkness has not overcome[ it. John 1:5

He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the LORD, ‘My refuge and my fortress, My God, in whom I trust!’ He will cover you with His feathers, and under His wings you will find refuge...” Psalm 911,2,4. (A favorite Chapter of mine)  

His Presence covers us, goes before us, and hems us in from behind. God never asks us to go it alone!…

Ah Lord GOD! Behold, You have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You.” Jeremiah 32:17

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am 2 Cor 12:9-10

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning, great is your faithfulness."Lamentations 3:21-22

  • Lord help my lungs heal
    Lord help my lungs heal
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