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

Newest Update

Journal entry by Debby Larimer

I’m very grateful that the call finally came this week from my hospital visit two weeks ago .  I am negative for Covid-19. I’m very happy to know that this bout of pneumonia too will pass.  It took a load off of my mind knowing that I was not a carrier. 
We even celebrated as a family. A dear friend that does not live locally had the idea of treating us to food from Salvatore’s, a pizza shop a few doors down from us.  We ordered online and the kids got out to pick it up. It broke up the day and we enjoyed our time celebrating togetherness. In a family of 5 who struggle with a variety of issues that could cause any of us to struggle to come out on top, if Covid19 came through our door.  I think it’s very hard not to see what is happening in the world, in our counties, in our neighborhoods and world and not shed some tears.  Yesterday a store in my community was closed because of positive testing. On my kid’s walks they pass by this store. My friends and neighbors frequent here for snacks, gas or groceries. One concern I have with this virus is watching it impact someone close to me. People are suffering alone, losing their battle alone and we are in our homes waiting and experiencing the isolation. I do believe that those who have had to change their lifestyle due to chronic health concerns have learned to adapt over the years in order to strive toward longevity. I have needed to chose to use my limited strength in my home and if there is more energy or strength, then I have used it to venture out.  Fortunately this past year I have been able to do more. I have attempted to extend my days by learning how to conserve my strength, health and time. It has been a learning process to balance what is best and how to avoid certain consequences of over exerting or subjecting myself to things that could affect my ability to stay in my home.  I know how important it is to trust and rely on God. I believe that nothing filters through His hands without His ultimate knowing. Years ago I came across these verses when it hit me that I was in a groove of questioning God and I would feel I had a right to tell God what to do in my life, others lives and His world. I wasn’t listening, trusting and inviting God to have His way in my life each day.
Isaiah 40:13 “Who can fathom the Spirit of the LORD, or instruct the LORD as his counselor?”
Romans 11:34“Who has known the mind of the Lord? Or who has been his counselor?"
My pulmonologist touched base with me and the tests that he wanted ASAP have been postponed. He reassured me that when they can resume I will be on his list to attend to. I also was suppose to go to Hershey to work on my pelvic pain, episodic bleeding and explore other options.  They rescheduled me for June for now.  All of our lives are on hold and I am trusting one physician, the faithful Great Physician, who is present with us and never slumbers or sleeps.
 I need to hang onto hope and remind myself and my family that right in this moment we are winning a battle. We are OK. Even if times are so very overwhelming, I need to fight the fear that wants to engulf so many of us. When praying with my family, I encouraged my children to share their concerns, questions, doubts or fears. God understands all of the things on our hearts, even the things we may not verbalize. Psalm 139:2 reminds me ...”You know when I sit and when I rise; you perceive my thoughts from afar”
We need to be real about how we feel, but then humble our hearts so He can work in and through us and those around us. Even in the muddle or middle of an epidemic.
I just love the Psalms during the ups and downs of my life. Psalm 119 is a  l o n g of chapter with 176 verses, but it is a chapter of the Bible that can calm my fears and carry me through a dificult time. It reminds me of the power of word during hard times. Last night I was soooo rest less. I had both physical pain and mental gymnastics so I went to this chapter
119:28...My soul is weary with sorrow;  strengthen me according to your word. 119:114....”You are my hiding place and my shield; I hope in your word”.  His living word is where I can go to find truth and instruction. 
As this week has unfolded I have faced some of the realities. I belong to a group of people who live with Sarcoidosis from around the world. There have been a few who lost their battle due to lung involvement and compromised immune systems in the past month. One young girl, 21, had this illness for 6 months and now she is gone. I’m just reflecting on my fortune to have life, in my home abundantly. I’m overcoming but also struggling to come to terms with the fragility of life. I know I’ve gone through periods where fear was a tough hurdle to outcome. Right now the threats are real for all of us, BUT we do not stand alone.. Even those in the medical field or those that still are working out in our communities to meet others needs. Help with our utilities is still available, we have the internet and phones and I have the support of my caregivers...I continue to pray along with you for protection over them, rain down peace that can only come from the Prince of peace. Help us all to work together in our homes and in our communities to cooperate first with what God is telling our hearts to do and then obeying the guidelines that are being enforced. 
Right now we made the decision to not have Geoff and Britt return to work at the supermarket. In fact they requested instruction from their PCP to see if they could return because they need a doctors note in order to return. They still have not heard back and as we have prayed more about it, we feels it’s not wise for them to be working because of the myotonic dystrophy and not knowing how this could affect them if they came in contact. We also want to take precautions for what might be brought back home.  Jenns business Is still on hold as well because they work with food preparation.  
Our family has never ended a day in true need. God has always provided, guided and given in ways that support us Spiritually, emotionally and physically. Many times others have shared in ways we never expected. We may be low on TP but we are not out yet. There is always enough to sustain us or creative ways to thrive.  I feel my adult children are dealing with this pandemic fairly well. They are accustomed to being limited with transportation, needing to wait for things and, unfortunately, living in a mode of making the best out of situations. Life is unpredictable and stability is a wonderful thing in our lives, but when uncertainty comes or we head into the unknown, I think dependence of God becomes a strength. At least I pray for this.  I have been so blessed watching the ways God supplies the unexpected. This God given security comes from within, in our relationship with God. So even if I end up away from family and friends, I always know He is near.
I have been painting, writing and learning how to draw using my I pad pencil. Emily is creating with polymer clay. Jenn and Britt started an online exercise program with PA spec olympics. We got back to our Friday fun night after two weeks. Geoff chose the movie and we had a backwards night by having eggs, OJ and delicious multigrain bread that someone shared with us. 
The song, A Mighty Fortress is Our God by Martin Luther continues to come to my mind. My grandfather was a pastor and I was privileged to learn and hear many hymns. This beginning of this hymn reflects on Psalm 46 verse 1, "God is our refuge and strength, a very present help in trouble." You can easily see where Martin Luthers thought came from. Another English translation of this hymn uses “A safe stronghold our God is still" but A mighty fortress is our God" is what sticks in my thoughts. Keeping in mind that this hymn was written in the early 1500’s. Thiswas during the period of exile and he was translating the Old Testament. He wrote it following the Reformation day....Hooray!
A big Thank you to the friends who picked up my prescriptions, those that are looking for TP and the grocery shoppers, and everyone that is working tirelessly to serve in our communities. 

Psalm 46
God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. Selah
There is a river whose streams make glad the city of God, the holy habitation of the Most High. God is in the midst of her; she shall not be moved; God will help her when morning dawns. The nations rage, the kingdoms totter; he utters his voice, the earth melts. The LORD of hosts is with us; the God of Jacob is our fortress. Selah 
Come, behold the works of the LORD, how he has brought desolations on the earth. He makes wars cease to the end of the earth; he breaks the bow and shatters the spear; he burns the chariots with fire. "Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" The LORD of hosts is with us; the God of Jacob is our fortress. 

A Mighty Fortress Is Our God
Song by Martin Luther
Lyrics
A mighty fortress is our God, a bulwark never failing;
Our helper He, amid the flood of mortal ills prevailing:
For still our ancient foe doth seek to work us woe;
His craft and pow'r are great, and, armed with cruel hate,
On earth is not his equal.
And though this world, with devils filled, should threaten to undo us,
We will not fear, for God hath willed His truth to triumph through us;
The Prince of Darkness grim, we tremble not for him;
His rage we can endure, for lo, his doom is sure,
One little word shall fell him.
That word above all earthly pow'rs, no thanks to them, abideth;
The Spirit and the gifts are ours through Him Who with us sideth;
Let goods and kindred go, this mortal life also;
The body they may kill: God's truth abideth still,
His kingdom is forever.

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