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

1Corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.”
I have struggled with limited activities since I last typed. I am looking for answers, possible causes and pleading with God for any solution to propel me to more quality in life. I have not been bouncing back and my pain has intensified. It is greatly impacting the movements I try to make. My heart and head desire to make it through. I do not like the barriers and limitations that stubbornly do not flow me forward, upward and inward , No one likes setbacks. His strength needs to carry me through.
This above verse talks about the body of Christ, the church, but right now it reminds me of the struggle when any of us see a family member go through pain in life. Love hurts, BUT God gives us His strength when ours feels gone. This new year has caught me off guard.  I try to push away the worry, frustration, doubts and fear.  I express my feelings but even they can lead me down unnecessary paths.  I can’t quite bundle them up as nice as I would like so they creep into the silence and stillness of moments like this.
I want to start off with a request for Geoffrey. He had his sleep test due to his struggles with daytime sleepiness and needing more hrs of sleep in an attempt to battle fatigue. It has been hard to see both Geoff and Jenn struggle this past year. He originally started with  breathing testing this past Fall, but did not meet criteria to see a pulmonologist. When he went to his neurologist she helped him with much needed referrals not only for the sleep test but other areas that have been a bit of a challenge to get him these treatments, Fortunately he was very cooperative with his sleep test and it resulted with new information. The sleep specialist shared that due to his Myotonic muscular.dystrophy he is experiencing both central apnea and obstructive apnea. He needs to return for more overnight testing because he will need help at night with a machine to help ventilate his airway. The concerning thing is that CPaP may not do the trick. He may need BiPap or ASV. This may help him rest better. I have needed Bipap for a number of years but this news feels like a blow. Gaining this knowledge about my son hurts. The testing was done near my parents home so Chris took him Thursday night and they were available to bring him home. There has been a hard question that only God knows the roadmap, but when this question was asked, I’m not sure I was ready to acknowledge.....it has shaken me to the core.  Deep down I have watched the progression in both Geoff and Jenn and have known the possible reality but try to keep hope inside.  I do struggle with fears and worries but it’s hard to harness them in the face of the unknown. This question to his doctor was, Can Geoff anticipate  any improvement in their physical bodies with this disease????? The doctors answer was that it will be a gradual progression overall and will not improve. Addressing this, reminded me that “I don’t know” !!!! I can’t control, I can’t make it better. It’s one day at a time. I want t to treasure these moments and to hang onto the hope as best as I can.
Everything in me wants to be reassured that God has this! The only thing that I know for sure is my anchor has to be fasten to Him. ...But God, But Christ, and But when…When I consider scripture, it’s rich with stories of .....what was lost, but now it’s found. Someone was dead, but is now alive. A person was blind, but now they can see.. This is a day to day process for me to accept whether life goes the way I desire. These phrases are all throughout the Bible. I can’t lose hope, I can’t let my worries carry me. But faith in God and surrendering is relinquishing my plans for His....NOT my power but God’s strength.  My pastor has used this phrase “BUT GOD” for us to echo back with confidence.
This family is A PART of me. My blood does not run through their veins, but through adoption they are a deep part of me, an important, integral part of why I fight. As a mother bear, I love them ferociously. I weep when they weep. I rejoice when they do. I suffer when they suffer. My life has had purpose because a good God gave each of them as a part of this family. There are times when I felt vices trying to rip us apart but we came back together During very hard, trying times when each member may have felt displaced, God has brought a renewed sense of wholeness and yes abundance in life. He has used all different people to assist with this and I take my role seriously. I can’t help but inwardly feel strengthened even in times of great weakness.
Even on the hardest and weakest days, this family is trying, working and succeeding and getting through,  never alone. 
I really have been stubborn about returning to Hershey but God is paving the way, whether I like this trend echoing from my current doctors.  Because it is unknown and the history of treatment. It was good treatment but my history was hard. I want change. I want to graduate, more stability, more barriers in life and society removed. I want to minister, I want to plan, but ultimately as I lay down some of those desires or expectations, I can better move forward with the courage to accept what I CAN do or delight in.  I will not settle but my days are unpredictable and like us all, each day we attempt to battle forward.
Even when I feel shaken, or in too deep, and or I’m examining the struggle I need to be willing to go deeper with God. I expect the best and hope to see more joy in the future for each of my children but my perspective has been changed since they were little. When they were babies and toddler, my dreams were big. I saw them growing fast and conquering. I personally thought I could conquer and impact. I was proud of my positions and roles in life. I now see that my role was not to do these things, but to “let it go” and learn to soar along side them “into the unknown” (quoted because I hear Frozen 1,2 songs around this home). I still may need some more humbling. Who likes humbling? It hurts but it changes. I reflect on the stories of men and women in Gods word who may have been in a comfort zone and all of a sudden, God brought about a humbling change that guided their lives onto a complete new path.
Yesterday I met with my Palliative care dr, She has been part of my journey for almost five years. She relayed even more to me that I need insight from Hershey because right now my left lungs has more collapse (atelectasis) than a year or so ago. This can change but it is concerning because my current doctors are aware that the newest findings, may suggest progression of the neuro_sarcoidosis. These all could be inflammation and I do have systemic involvement. They have concerns that all this pain is possibly coming from my spine or somewhere in my nervous system. These are possibilities that could be unfounded but it will  be explored. There are new spots on my brain as well. I know this type of travel is dreaded. When Jenn was a baby I made this trip often because all her care was at Hershey. It felt like a blip in our routine. But now for me to receive care it involves transportation needs, it involves other people, travel that is hard on my body and strength. I went to an appointment this week and worked with therapy and it was pain that was at intolerable level as I tried to shift, bend or lean.  Ok let me get back on track. I do have a ride to my first Hershey appointment. One step, breathe at a time before I get ahead of myself.
Since the new year, the agency I utilize for home care has not been able to fill some of the attendant shifts. There have also been some hiccups with the brand new system of care management. Therefore gaps in care occur where I end up alone because family members may be a at work or unavailable.  My attitude with this scenario needs help and prayer.   A lot of factors pop up. Pray for the people who enter our home. Pray for patience on all parts and continuity in care. Pray that they will feel rewarded for their time with all clients. It’s hard to balance responsibilities with family members and accepting  some things that are too challenging for my adult children. I Pray that my family members would work better together so we can maintain a healthier environment. I actually miss my Friday cleaning days from what seems like days of old. I miss working, teaching and being out and about. I was finding ways to contribute from my level but right now I can feel awfully useless as pain and more restriction is settling in my body.
 I’m exhausted from trying to communicate or keep up with the responsibilities I need to with owning a home and the five of us living here. My children and I can not do basic repairs so It adds to challenges. I want my home to be a refuge for others. Many people would agree that it’s more comfortable to be helping others than needing help with activities of daily living. Its hard to embrace or accept the limitations and barriers for every day mundane steps or activities. It can be hard to find solution to accommodate . . Pray God works in my heart and that my adult children gain success with caring for daily tasks with greater independence. I try to relinquish my need to control.  
Thank you for taking time to listen to me.  Please don’t hesitate to share how you are enduring these days. I really care.

Thank you Lord, that you alone are my rescue story.  I bring to you my family and friends. You are greater than anything inside of me. I bring you what I can not control. Glory to Glory in your faithful steps. Forgive me for the hang ups and heartaches that lead me away.

Tomorrow is my 53rd birthday and I am glad that God has blessed me this year. I hope to celebrate this upcoming years. 

Right now I appreciate your prayers. I value your insight.
 2 Timothy 1:7
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.”

Galatians 2:20 “I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.”
James 4:10
“Humble yourselves before the Lord, and he will exalt you.”



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