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

I feel as though I am discovering some insight for myself. Writing it out is helping....writing on my heart.

I’m in a different place right now. I am so very thankful that my pain has been at a more tolerable level the past few days, Yay! The nurse that came seemed to change things around and the pain has turned down, freeing me up to to work with and manage it better.. I got to church again this past weekend. I went to see the film Overcomer with my family and friends on Tuesday and we plan to visit some friends in Central, Pa for the afternoon coming up? Hooray!.

There are so many people hurting and hiding in this world. Today tears rolled down my cheek, quite unexpectedly, as I read of a man of God, that I “follow” online, who took his own life. I don’t know the ripple impact it has on his family, but I understand pain, loss and brokenness.  I haven’t walked his road, but knowing he struggled to sort things out and lost the battle hurts.  Jarrid Wilson spoke out about mental and emotional awareness. Mental illness is a dis-ease that might be temporary for some, or long lasting for others. Naturally we want others to chose life, to chose to get help and find hope, but it’s not anyone’s place to judge another’s journey. 

It hit me this afternoon where I was on the real 9/11 almost two decades ago.. I was in my early 30s. That day I was battling an eating disorder and my weight had continued to drop under 100. I went to an appointment and when this doctor asked me if I would continue on the right path as planned, my answer was, “I’ll try”. She told me, that is not the correct answer. You need to say, “I will”. I retorted smugly, “I’ll try”. With that response she felt I needed help as an in patient. That day I was clueless of what was tragically happening in the world. “In there” I felt scared, alone and terribly misunderstood. I was lost and overwhelmed, i  didn’t have pieces yet, as to why I wanted to be in control of this area I didn’t know how to cope in my marriage with open broken emotional wounds.  I was able to get my weight to a healthier level and get back to my commitments only to find while I was in the hospital, the man I married to had yet another affair. I would be with him about 5 more years before I discovered the magnitude of his choices. I felt like a wife to a man with many de_man_ds. I am far from perfect but I could not come to grips with who I was when I was with him. In my marriage I didn’t feel I deserved love and I continued to drink in lies about my ‘self’.  As I learned to look more intimately and closely at who I was IN Christ I began to peel the lies off and discern that I was more than just adequate, I was really a “workmanship”, a work of masterful creativity, in. I like the word ‘handiwork’ because I see how we are made by His hands.  Ephesians 2:8-10. “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that anyone can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.” It’s not me working but Him, in co-operation with me.  It’s that act of the will,... when we are bending or breaking it’s never pleasant. A seed in the ground is even broken before we see some results...I want to try to keep faith in front, not fears.

 I used to shed many tears, a fountain of fear and unrest, but it has been a long while since I wept over something that touched this type of tears until I read of Jared Wilson’s death on 9/11 

In Psalm 6:6

“I am worn out from my groaning. All night long I flood my bed with weeping and drench my couch with tear”. 

This was me, afraid, so overwhelmed, and not looking at what was mine to claim in gratitude in thanks-living at that given moment or that day. Prior to getting the professional help from Christian counseling, I was worrying about my past and terrified of the future. I was looking in wrong places for a quick way to switch off the confusion.  Gods truth and light was breaking through the broken pieces, where the light could shine through. Again it reminds of the Psalmist.... David knew what it was like to be downcast, depressed, sick, wounded, broken and in pain. In Psalms chapters 42 and 43 this great man of God, was very downcast. But at the same time, you read of hope and growth and his praise and gratitude for God’s care. Psalm 91 is still a favorite of mine because of the theme of protection when times are tough.    

When I was able to get around as I pleased, before, I was diagnosed, I could come and go as I pleased. I had abilities and an athletic attitude. Walk out the pain, Run away from people who hurt me; try to fly away or disappear if pain stung too much. I was a whirlwind of motion and emotion that operated off my many to-do lists, I would schedule more into a day and take on more responsibilities. I filled my days with activity. When the kids were in school, I wanted to stay out and about too if I could. . I had no idea what it was like to know true stillness. My body and mind didn’t connect what true rest was. 

The disclosure of my husbands sin, told to me by one of my children, felt like I was shot in the deepest core of me. The shock took me to a a new level of wanting to speed up and make it All Right for my children and I. I never knew what it was like to scream so loud into my pillow at night. It was all true and no one denied what had happened, but a few important people in my life wanted me to patch up my marriage and put locks on the children’s doors. I could not spend another day in that marriage. I became defeated when I couldn’t fix the pain or horror left behind. I did not know how to fill the voids of abandonment and betrayal. I tried to give material gifts to my young children or tried to arrange trips, and fill our lives with ways to escape the hollow halls of our home. As my children began to share more, I realized the relational transgression and I couldnt rewire, revive and restore what felt taken. I FOUGHT often in my own might to make sure I set the record straight. I felt healing amounts  of shame for not knowing, not seeing, not noticing, not realizing. In the end, I wanted to see justice. I wanted to know my children were protected and safe,  

Just like I was unaware of all the magnitude of dismay in our family, I was unaware of how sick my body was getting until that next heartbeat or breathe would sideline me coupled with a soup of physical ailments and pain. This was like nothing I anticipated .  To lay, listen and learn that God needed to be in control of this whirlwind of uncertainty was a larger pill to swallow then the actually pills, tests and L O N G hospital stays A W A Y from the children that I did not want to lose touch with. My body laid still but my mind was alive trying to manage each day who would care for my bewildered children.  Their trauma and experiences seemed compounded by my illness.. WHY God???? Finally a diagnosis was confirmed from the open lung biopsy and treatments started. I have never wanted this illness to define me.  I say this, but changes in our physical appearance or abilities do tend to change perspectives.  

I’ve said before how faithfully God provided support for both my children and I so I could fight my way back to some stability in our home. I felt God moving us to MOVE back to my hometown area. He took control of so many details of our lives. To this day I don’t know how that move happened????? In the midst of this time, I fought through Thyroid cancer and all I know is family and friends from the areas we lived showed up and God guided us as we landed back in Macungie. 

 I was in what felt like a much more stabilized place medically in 2010 because Sarcoidosis had only invaded my lungs and the immunosuppressive medicine and steroids seemed to be working. I never thought it could get worse before getting better again.

I had this mindset when we moved here, to hide the disease because I felt fine. I wanted a fresh start and my pride wanted me to put on my super, self sufficient Mom suit. I was driving and able to be a mom with some physical limitations but I felt strong and revived. I felt that invincibility surging through my veins. I was walking and doing life, much like everybody else. I was doing pool aerobics. I was in Bible studies with other woman and finding areas to use talents and involvement. We had picnics and parties here, and both my children and I were a part of life, included in community. On that community note....When we take part in communion, we are remembering how Jesus was broken for us.  We break bread and drink the wine together. Jesus knows about brokenness. One of his last words were essential, Why God have you forsaken me.? “Jesus cried with a loud voice, saying, Eli, Eli, lama sabachthani? that is to say, My God, my God, why hast thou forsaken me?”Matthew 27:46 kjv

When my disease returned and it was first found in my lymph nodes one Fall day, I tried to wish it away. Then the weekend before my birthday, I kept spiking a fever and my glands were enlarged. I was going out with a larger group of friends to celebrate my birthday and another friend in the group.  We went out for Chinese and then bowling. I kept swallowing Tylenol and pushed my symptoms aside. I returned home late, with my teens and went to bed upstairs. I woke up to disabiling symptoms and I had these sores in my hand. The rheumatologist oncall at Hershey instructed me to come right away. In the next few months my condition deteriorated. My spine and central nervous system were involved and I was losing muscle. I never imagined the nursing home (home wasn’t HC accessible) and I had not reconnected with the hours of attendant care prescribed from the other county.  I was challenged by this intruder in my immune system causing havoc. My kidneys, bladder and now endometrial area all with infiltrates that caused issues. I couldn’t just walk or wish it away.  Most of you know the rest of the journey because you have been the balcony people cheering me on to fight and challenge myself to rise above. People play a big part in healing. My confidence with being restored as I’m able to reconnect with others.

As I am trying to tie things together here, I am brought back to fact that there are many other people who may not have support, understanding and tools to fight.

Sharing and caring is a good way to help. Love gives....and helps others stay strong. When we lift our arms out or up and relinquish our control, it allows us to empty our_self of Self. When your arms are held up at your side it makes a cross ✝️. A cruciform or shape of a cross. At the foot of the only cross is where much healing can flow. Collectively and personal connecting to one another.

 I want to Give what I can from all that I have been GIVEN. 

“Give, and you will receive. Your gift will return to you in full—pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back.” Luke 6:34

 Even in death we give (our legacy, we donate, leave memories)

I’m thinking living-giving for now though.  Someone might say, “Debby you are preaching to the choir because so many people have given to you. Yes, I raise and exclaim a hallelujah. I am very grateful to God and I want Him to receive all the glory. It’s not about ME or any one moment, or physical, material or act of kindness given, but looking back with the perspective where I can see how it knits all together helps consume me with thanksgiving and peace.  All my mistakes or misgiving, combined with all the good that allows you or I to keep moving in that direction...Glory.  Praise for the ongoing grace. I often want so much to return all the favors and do the same things others have done for this family but that’s God’s job to bless. Psalm 116:12, the psalmist asks this question? 

 “What shall I render to the Lord for all his benefits to me? I will lift up the cup of salvation and call on the name of the Lord, I will pay my vows to the Lord.”

 I am working with the limitations that I still have making it hard to get my body to co-operate.  I struggle to keep up and my body and mind fatigue easier. Nothing is wasted with God, because sadness, badness, woundedness or brokenness can be made into  goodness or gladness. Out of our broken places we are moved to compassion, it makes us bend and sway and break..  Many have shared kindness and co-passion with my children and I.  What a beautiful gift when our passion overflows into anothers struggles.

2 Corinthians 1:3-4

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

 I can only change me.  I can only ask God to Help me, change me so I can give up to, give back to and share the passion....ComePassion!  When I was looking into the word, comfort, I saw that it comes the Latin word, ‘with strength’  Caring for others can either make us weary or we can find strength to come along side friends, neighbors, and others we might have not have ever thought of. He comes along side us with strength and power to help.

 Even at times when I felt my weakest physically, my mind found strength.

2 Corinthians 4:17, “For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory”

My family members can speak for themselves, but could you join me in lifting them up.  Please also pass ANY of your requests or, FB, Insta or Prayer for Debby so I can lift you up.

Please Pray for Geoff’s job. He still needs to wait to hear from them to be oriented. Pray for his respiratory system and daytime sleepiness. Also to find a specialist.  He has changed so much in attitude and action. Man of God

Emily got notice that there are cutbacks in the Deli, so the manager said she could still work there but as often. The store manager then said, that she can train her to do front end. Praise!  Emily has always had left hip pain (we suspect from the physical trauma before adopted). She fights it. Sometimes she had improvement, but It is getting more intense and she had done a lot of therapy, tests over the years, has seen countless doctors, including an orthopedic surgeon. She feels it’s an invisible problem. She has an upcoming appt with a different PCP and I hope the dr listens and can direct her. 

Britt is doing well at work. She is funny, fierce and feisty. She is also shy and she struggles with social and making a friend.  She has always been missions minded. She is a good writer and fills notebooks with stories or scenes.  Pray God gives her the desires of her heart. or confidence and not fear 

Jenn is doing well at her work. She went to a dance class. She has feared failure but her steps forward are breaking that lie. Pray for impulse control, safety and anxiety. She is a woman with dreams and ideas. She has decisions to make and even though I love her, I can’t make them for her, only with her.

I’m having symptoms that I’m praying about investigating. I just need the correct. direction..It involves my nervous system and I just need answers to why or how this is changing.

Psalm 91 He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Surely he will save you from the fowler's snare and from the deadly pestilence.He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the Most High your dwelling-- even the LORD, who is my refuge--then no harm will befall you, no disaster will come near your tent.For he will command his angels concerning you to guard you in all your ways;they will lift you up in their hands, so that you will not strike your foot against a stone.You will tread upon the lion and the cobra; you will trample the great lion and the serpent. "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation." 

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