Journal

Journal entry by Debby Larimer


Today as I woke up I was overwhelmed to see our neighborhood full of men, women and students, 40+ people were working to repair damage done by the storm and aftermath. It was a beautiful sunny day and it felt like a fresh start on the cleanup here on Main St. My children were busy helping here at our home, but also at other neighbors homes. My garage actually looks better than I remembered it. They removed truck loads of smelly, swampy smelling items and disposed of it for us. Then my older brother, Dave came from and with Geoff’s help, they got all the wet debris out of the basement and threw it on a pile over the deck. A student from an area Christian school spent the entire day at our home. He left to get his power washer and was out in our garage making it look even nicer. Emily had a friend, Hope over and they were a big help. The student stayed to help in Emily’s studio. He liked  6 of her paintings. We tried to give back to him to show appreciation. Next week Emily has a spot at our local Farmers market to share her paintings. She is very excited about this opportunity.
A big box of photo albums were in the garage and we have them out in the sun and fresh air to see what we can keep and what we can discard. It was a sight to see all the equipment and tools being used to help this community. Neighbors were sharing what they had to offer and the volunteers moved in sync as they conquered the jobs at each property. On walks, I used to admire landscaping at the homes along our block. After these storms ravaged the hard work of homeowners this week, it was so painful to be outdoors. It felt like a shock to see the disarray of the beauty. I was avoiding sitting out, as if the bewilderment and shock of it all was everywhere I looked. Tonight I sat out, with hope, with the sense that I am perhaps being changed for the better through this process. I realize that sometimes we all need to go through a process, often painful, to arrive at or comprehend the promises of God.  I’ve tried to bypass the pain but isn’t It sometimes all the little things that lead us to the lesson?. My life often feels mundane or humdrum, but as my life unfolds, I see that my purpose is part of a process of what God is doing. I’m a part of what a mighty God is doing in the circumstances and moments of the day. His mighty power Is perfected in those weak, vulnerable steps we each take by faith. .  
During the cleanup, our local LH Valley news, WFMZ came and I was interviewed, among others. When we saw the news, we were surprised to see that the news piece featured our family and our next door neighbor. I included it for those that do not live locally. They cut out the parts that I shared about God and His character. The news reporter was trying to question me about my fears, and questioned how God could have allowed. I remember sharing that God makes it clear in His word, that we are not exempt from pain and misfortune, but rather He is very present in our times of joys but also in our sorrows. He asked about my terror during the storm, but I was focusing on God’s reassurance. Since the past had times where I questioned God or doubted Him, where. I didn’t know what would happen, but the peace was present to help me wait it out. God’s faithfulness and provision is available when we reach for it, pray for it and accept it. I never want to take his love and mercy for granted. Many minial moments are what turn into the miracles. It’s all for His glory but I’m a recipient of the grace. I don’t think that God’s plan for everyone is to make them rich, completely healthy and to prosper them through the world’s standards. It is wonderful when this is part of a plan but if not, it teaches the necessary lessons to abide, trust and depend. It has taught me to surrender, to find joy in less, to let go of some of that complete self sufficiency  and expectations. 
I also added a picture of a rock collection that was found in a pottery dish In our garage. There was mud in there too, but when I saw this dish, I remembered what it was used for. In the year following the trauma and breakup of my marriage and the case that played out in the media, we made a thankful rock garden of sorts. On these rocks or pebbles we wrote what we were grateful for. At this time, being thankful was not an easy task for me and this concept for my children took lots of thought. It did not come easy, but we needed to learn. As I held and read these stones today, I was able now to let my praise be genuine from a heart that God has worked on over the years. On the stones were written, ...police, friends, teachers, car, God, forgive, church, Pinebrook (in Poconos) etc. Today my heart was so full as I look back and look forward. The praise on my lips comes easier than years ago. 
Thank you for praying, encouraging and listening to me as I seek to learn.

Psalm 31:1
“ I will praise the LORD at all times. I will constantly speak his praises“.
Psalm 33:22
“May Your loving devotion rest on us, O LORD, as we put our hope in You.”
Patients and caregivers love hearing from you; add a comment to show your support.
Show your love and support for Debby.
Make a donation to CaringBridge to keep Debby’s site up and running.

Journal entry by Debby Larimer

UPDATE:
 Some Good News and not so good news. 
This morning, I saw a post that indicated that a group of church members from some area churches nearby, had a crew of men offering help to those in need in Macungie. I contacted him and he came to look at our garage situation. The flood water came right through our garage and out the front studio window.s etc. This group will help with my family to clear out all the mud and debris next week in the garage. Our garage used to be a business so it’s fairly large and has steps with storage overhead with multiple rooms.
Salem is a church up our mountain and this is where Jennifer went to her first years of school.
The bad news is, that the “roaring waters” of the flood actually came through with such force that it knocked the foundation off in the front studio area. The door does not open because that doorway is holding things up. They will attempt to see if somehow the foundation can be put back in place. This morning I felt like I was that doorway trying to hold up under the pressure. Now I feel relieved knowing people will help me work on this project or perhaps resource me in the right direction.
Thanks for your prayer and support. I have a place to start!
Glory to God.
.................................................................................

“Trials teach us what we are, they dig up the soil, and let us see what we are made of” Charles Spurgeon

I forgot to update here that my procedure that was s heckled for Monday. It was postponed, due to insurance approval pending. Like a few have commented to me, perhaps it was a good thing since I’m still not sure how well my body would do with a surgery of this nature. It’s not just the procedure, but trying to recover afterwards. My pain level is very flared up all over and I have concerns with inflammation right now. I have not received clear direction on what my next step is. I will be speaking with the Sarcoidosis specialist next week about my plan of care and test results etc. 
I am very concerned about the test results that are coming back for Jenn, Geoff and Britt. On Monday I received two phone calls to inform me that Geoff is aspirating into his lung. It’s a non-productive form of aspiration and dysphagia. The second call was concerning Jennifer and she is also aspirating and having trouble with her esphogas and swallowing. Jenn will need to see an ENT and testing for an area that showed up on the x-ray that needs further investigation. We are hopeful that the area showing up is part of her many surgeries on her airway from her juvenile laryngeal Papillomas. Thankfully, Jenn and Geoff have not ended up with any recent pneumonias, most likely because they are able to stay somewhat active, but it’s serious enough that both of them need to begin a modified diet and all of their liquids need to be mixed with thick-it to the consistency of nectar. Water and other liquids need this to help with swallowing and to help prevent pneumonia or serious aspiration into the lungs. Getting full cooperation will be a process for them, but they are working now with speech and PT/OT. Geoff will also be having an MRI soon.  I have suspected for awhile that Geoffrey had symptoms of thyroid disease, but could not impress this upon physicians. The specialist that has helped us recently did test him and he indeed has hypo-thyroidism. Geoff also started a new drug from his psychiatrist and the effects and side effects have not been as helpful. I hope and pray his dr. listens to him and works along side his other drs. 
Brittany is being referred to an ENT for some ear concerns. She had her audiogram. Brittany also has some heart concerns. Her EKG showed a incomplete right bundle branch blockage and findings I don’t understand. She has her echocardiogram and sleep study this month as well. Her lungs also  need to be watched. Britt will have a test today to evaluate her airway and swallowing.
My heart is heavy and I’m struggling to rest tonight because I can only go step by step and try to come along side them as we walk this road together. There are things that are tugging at my heart and I want to do so much more for them. I want them to soak up as many positive experiences as possible. I want them to hold onto their hopes and dreams and fight. I’m thankful for their knowledgeable, proactive doctor, but I am wrestling with the reality of this disease. Myotonic Dystrophy is not what defines them, but there will be hurdles. Perhaps these new reality help address needs, but I feel like we are all struggling to integrate  the new knowledge .
Emily has been a big help. She helps to put each of their eye drops in because their cornea gets dry. She helps to make some of the thick it and picks up prescriptions and much more. She has her own appointments and she is the youngest. She has had lifelong problems with her left hip and feet. She attends Physical therapy twice a week and is anticipating a contrast MRI from her orthopedic doctor. She will be seeing a new doctor in September not only for pain, but to address the supports she needs of her unique concerns. I tell her so often that I want to help her live out her dreams or pursue further independence, but she is comfortable with the helping. It’s hard on her because she indeed understands realities and works hard. I’m glad she is being used as a direct care worker.
Yesterday was a very difficult day. We didn’t know how we would be impacted by this Isaias Storm. Our home is already full of needed repairs but it’s hard to know how or who to contact for the needs. It’s hard when you can’t do some of the care yourself. I used to love tinkering around with projects, now I can’t do the projects that tinker in my head. Before Corona, a friend was helping me look at higher levels of the home where I can’t access or view. I worked on a list, but circumstances in the world in general magnify the repair concerns. It seems like the world concerns are snowballing. Being a homeowner is tough, but it allowed me to be in a home that could house the 5 of us. The mortgage is reasonable, and we have the finances to do house hold jobs, it’s just tricky to get supplies and find someone willing to help carry the steps. I’m reminding myself to go step by step and make the steps.
But yesterday we had severe flooding, so much so that the fire department was called because the flooding came through our yard and from other directions came close to flooding my bedroom, because it was dangerously close to the deck door Leading to my room and first floor. Fortunately It was just our basement that flooded about 5 feet yesterday. This basement has flooded two other times, but this was the highest the waters ever rose. Fortunately when the storm let up, the yard flooding went down. The flooding behind our garage was much greater because trees and debris came down blocking the streams and underpasses that are at the base of the mountain behind us. Everything seemed to be overflowing. Our neighbor was in his garage workshop when things got out of hand. The waters pinned him inside side his garage. He injured his arm and couldn’t be helped to get freed until the storm died down. I have a supply of medical things so Emily took bandages over to use until it was safe to have it addressed properly. Our large garage and much of its remaining contents is covered in mud and debris. The force of the waters went right under the double doors. On Monday, before the storm hit, Emily and a friend were cleaning the garage because there is a studio in the front of it that was a wood working shop, including showcases that the girls were  trying to set up as a art area and shelving for others things we could store. The damage to windows and the garage doors is hard to look at. I’m just very grateful the floors we live on here in the home were not affected. The fire and police did respond and thankfully spent hours coming back until later in the evening to help pump much of the water out. My next step is to call a clean up company for our basement and furnace care. We have no hot water, but we do now have electricity. Our community was hit very hard so I’m not alone. This has affected the world. I’m praying there will be no more hurricane or tornado watches today. It sure is hard to see the devastation.
I was exhausted last night and hoped for a good night sleep, I slept  a little but pain woke me up and then my mind was my worse enemy. I have much to be thankful for, but the many questions were swirling around about how to proceed. 
I once saw a post that said: HOPE....Hold On Pain Ends. We all need reminders that pain isn’t always present. I included a photo above that was found over the weekend. It is a photo of me with two close friends at the beach. We are smiling and I’m jumping with joy and enjoying myself. In hindsight I realize when this trip occurred. We were on a majorette trip with the whole family. I look healthy and happy. This picture was taken only weeks before I became critically sick. It was a year following the break up of our family. It was a time when I felt the stress of the upcoming sentencing of my “husband”. This picture reminded me that even in times of stress, loss or devastation, we still continue on. We remember pockets of tears and bewilderment but their is also joy, laughter and living out the best life we have in that moment. The Debby in the picture jumping at the beach is still the brain and body that I’m living in. Today I May be sad, concerned, even discouraged, but I also have abundant joy. I don’t want to face the medical concerns, the homeowner’s care. I may not know who or how to get the help we need, but I take comfort in knowing God is not surprised by the events right now. I see His faithfulness over the years and even at my weakest, there has always been a strength that has pulled me through, even if I didn’t feel it in the moment or the memory.
I know that all these appointments, connections and responsibilities have not come together without support.  I cannot stress enough how much your love and support means. Even when our family works independently, it does wonders to know that there are people cheering us on. My adult children feel that support and I see how they are proceeding with shoes of peace. This is a big part of the battle.. Prayer does matter and I cherish the fact that we can pray for one another. 
I’m sending a hug to all of you or elbow bump.if you prefer.  

This stood out in a book I’m listening to on Audible....
“If you knew all the answers, there'd be no need for trust, little one.”  
― Patti Callahan, Becoming Mrs. Lewis

2 Corinthians 4:7- 9
 But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed”

I Peter 5:10 “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.“


Journal entry by Debby Larimer

Thursday
“Jesus Christ is the same yesterday and today and forever.“ Hebrews 13:8
“The counsel of the Lord stands forever, the plans of his heart to all generations” Psalm 33:11
Life has become busy with change and uncertain time, but God and His goodness does not change. He was the same throughout my life but it’s has been becoming much clearly with age. He knows my every need, even during the night. He never slumbers or sleeps when we are in need. He knows what is unfolding or about to happen in life as we know it . 
Phone calls have come with the right timing. 
The scheduled tests and appointments are fallIng into place.
 Rides come together and transportation is worked out. 
Supportive words are embraced and come at a time that extends grace from God.

It was Brittany‘s turn to meet with the Muscular Dystrophy specialist. Her signs and symptoms were more hidden to me and her current PCP physicians. This doctor that knows the symptoms and makes this her focus at Good Shepherd 2x a month. She is a Temple doctor and has been a support. Brittany hands and feet are affected by Myotonia. They are weakening. Her breathing tests indicated restriction and so further testing is required. She will be having tests next  to look closer at her heart. She will also see an audiologist. Britt will have a sleep study completed as well. She has her siblings and a mother that can coach her through these tests because we too understand what is involved With testing . We have so many parallels  medically and even experientially. It breaks my heart to know that three of my children are officially diagnosed with a disease that is revelIng itself in this manner.  I didn’t need to face these tests until I was 40. 
The decision to adopt was twofold, 30 years ago. I loved children and wanted to be a mom, but I desired to raise children that had perhaps a rough beginning.  I wanted to be part of the healing process. I saw this happen with Jennifer’s early start. She overcame things with an attitude of strength that I admired in her. I said to God, “I don’t want them to go through some of my hard experiences. I didn’t want them to grow up with emotional pain. I didn’t want them to struggle. I didn’t need them to be brilliant, I just wanted them to have emotional and Spiritual stability. The security we all need and yearn for. When this dream was exploded wide open by depraved sin and brokenness, I had to acknowledge that the most vulnerable and at their weakest and tenderest place, trust was broken beyond repair to the family unit. It took time to rid the shame that occurred under our roof.  The emotional, relational and physical pain of sexual abuse does not just go away like a physical wound, it stings for years. Hopefully it stings less with healing but it doesn’t just resolve with justice or separation from the perpetrator, it is a part of your life that needs to be integrated. God is the only one that is breaking through their lives to restore hopes, dreams and stability. I share this because when my condition was diagnosed almost 15 years ago, I asked God again to spare my children of physical disease. He did spare them from a lot, but they watched me suffer, and did not have the stability again. I barked and wrestled with God, telling Him, “I knew what was best” and I then told my doctors, the same thing I told God, “FIX ME NOW” Instead of that happening, God answered my taking us all through the refiners fire and yes it’s been difficult, but LIFE is just that...we all experience both the pain and brokenness of the world we live in. I remembered how inwardly I would kick and scream and pleaded with God, but instead of giving us all good health and prosperity, He gives me strength and a peace. The damage of sin on anyone’s part can impact moving forward. BUT GOD,....knows our needs, knows our future and as I learn to turn this family over to God He is steps ahead. I feel more secure and I can trust Him for my children’s lives and my own. I live the stages of independence my family is stepping into. It felt good to share that. People that have surrounded our whole family have been a large part of our victories. We all need each other. We learn a lot through relationships and in this chapter of my life, I feel that love breaking through. I love how God asks us to hand over our burdens, rest and then learn from each experience.

Matthew 11:27-30 All things have been committed to me by my Father.No one knows the Son except the Fatherand no one knows the Father except the Son and those to whom the Son chooses to reveal him.  
Come to me all you who are weary and burdenedand I will give you rest. Take my yoke upon you and learn from mefor I am gentle and humble in heartand you will find rest for your souls. For my yoke is easy and my burden is light”  

I am grateful for this new doctor that is addressing Jenn, Geoff and Britt individually. This is a burden lifter to live so close to Good Shepherd and know they are getting stategies and advice from a team approach. They are strong, even though their bodies have weaknesses.  I can only pray that the disease process will slow down. I believe in miracles and life sometimes is a series of daily little miracles full of grace that carries us through. 

Friday
I’m awaiting the nurse after a tough night with a painful problem with my catheter. I am exhausted from this pain.
Help came and the nurse indicated there was quite a bit of inflammation and even some further signs as blood was draining. I know from experience that things will hopefully settle. I’m thankful my regular nurse was in the area and was here before 8am. . I’m thinking my week of attending appointments and testing and spending time out with the family caught up with me. It was a week of hard doctors prognosis for my tribe and for me at Hershey.
I need God to advise me  on my newest health concerns. On Tuesday, the whole family set out for Hershey in a rented van to my appt with my former Sarcoidosis specialist. It had been almost 7 years since I saw her. My friend did the driving and accompanied me into the appt to help get the information from this awaited appt.
It was sobering and I won’t know the exact plan of  care until all the testing is reported on. I trust this doctor and it was a much different day, than when I first met her in 2009. The options and hopeful discussions I had years ago simply did not exist. She shared that due to it becoming multi organs and affecting so much of my system, she is not sure if anything can help without a cure. My bloodwork came back again indicating that my platelets have further dropped. I have high red and low white blood cell abnormaaties. My body is also full of inflammation. She is concerned I may have new or other auto immune soup conditions . She will be looking to see if perhaps something such as lupus is contributing. She could treat this perhaps then. The radiologist commented on moderate changes to my spine and to my hands and wrists. This supportive doctor elbow bumped Chris and I and suggested that we discuss things in two weeks after she requests further records from other doctors. She listed some new diagnoses like CAD( coronary artery disease), and polyarthralgia and polyneuropathy. The nurse that was here this morning, also came on Wednesday and my vitals have been a challenge throughout this week. I’ve had strength at times, but also very symptomatic and weak periods.  I carry hope, but I also know short of a miracle my body is tired. I am living my life as full and abundantly as possible.
I am scheduled for surgery Monday with the new urologist at Hershey. I’m not sure Im up for this. I will be getting anesthesia and I will find out if this Sacral stimulation process is something to proceed with. The thought of this procedure is concerning because I am weak, tired and feeling fragile. I don’t want to make a mistake in my judgement so I’m praying God opens doors to plans that will stabilize or improve my condition or shut doors on treatments that may add to discomfort 
I’m glad that when options for treatment seem to be few and far between, that I can still drink in the gift and joy of each day.  I can’t lose track of hope. 
Please pray for our meetings and appointments ahead
Pray for my procedures 
Pray for healing
Pray for testing
Pray for a cure
Pray for pain relief and stamina
I pray for those of you that come to mind. Do not hesitate to share ways we can pray together. 
I want to be able to “touch’ your heart, like you have touched mine!

I hope that this song is like a prayer for you as we all face challenging times.

“Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” Matthew 6:26 and “Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. But the very hairs of your head are all numbered. Fear not therefore, you are of more value than many sparrows” Matthew 10:29-31

His Eye is on the Spartow
Why should I feel discouraged
Why should the shadows come
Why should my heart feel lonely
And long for heaven and home
When Jesus is my portion
A constant friend is He
His eye is on the sparrow
And I know He watches over me
His eye is on the sparrow
And I know He watches me
I sing because I'm happy
I sing because I'm free
His eye is on the sparrow
And I know He watches me (He watches me)
His eye is on the sparrow
And I know He watches
I know He watches
I know He watches me
I sing because I´m happy
I sing because I´m free
His eye is on the sparrow
And I know He watches me (He watches me)
His eye is on the sparrow
And I know He watches me (He watches me)
He watches me
I know
He watches
Me





Journal entry by Debby Larimer

Friday

This week was full and as the next few weeks unfold, the schedules are going to have more to coordinate. On Monday, we had a trio that needed to meet at Good Shepherd for the MDA clinic.. I learned a lot about how Myotonic Dystrophy is affecting their lives and I want to encourage them to soak up the strength they have now. It was encouraging to meet a physician that could approach it with a team effort. She comes to this location from Philadelphia on a grant to work with muscular dystrophy patients. It was well worth the wait. When my children were young they received therapies from here, so going back took me back a bit. I saw how far they have come, but also the realities of knowing this genetic condition is a reality in their young lives and there is no way to halt it’s course. When they were young children, I prayed with hopeful expectation that they would continue to grow stronger and that it would pass this generation by. 

Being there, seeing this doctor findings and her explanations made me more aware of what may have been missed by other doctors who do not specialize in this, It was helpful learn, but hard to see it. Yet,  I need to still cling to hope.

For Geoffrey, his right foot ankle and lower leg the joint had shifted into an abnormal position. The muscles that  control the up and down motion are wasting (atrophy) and his one leg has already begun to turn. He will be seeing a doctor that can help to treat with orthotics or a brace. Geoff struggles to lift his toes and because this condition of MD affects hands, feet and face first, this shiftIng is already actively affecting his muscles and bones. This is true for Jenn’s ankles but her have contracture that cause her to be more on her toes. Jenn has very little feeling with the nerves in that leg but her balance is pretty good. She did a virtual race in intervals over the weekend for an event she takes part in each year to help others with intellectual disabilities. She was very happy with her efforts.

Both Jenn and Geoff have difficulty in the face, but Geoffrey has more concerns, this is true with the hands. Both of them visited with OT, PT and had respiratory testing. They will need labs and further genetic testing. When these children were adopted, the only test was a muscle biopsy. I didn’t want to put them through that and the developmental pediatrician agreed. Geoff now has restrictive lungs (like mine, his muscles struggle) and he will need to meet next month with a pulmonologist at LVHN. Jenn will be having a Sleep Study next week. Both of them will undergo swallow studies at the end of the month and meet with speech therapy. 

Jennifer’s weight loss and struggle to gain, may be related to her gallbladder and Geoff  will be having an MRI. Brittany will meet this doctor soon. Geoff was at the urologist this past week and they attributed these concerns to the MD. Emily has physical therapy for her hip during the week and I was at an appointment with her this week. She Is able to be active so I hope she gets relief. Our family has physicians now at LVHN, St Luke’s, Good Shepherd, Hershey, EPGI among some other services. Sometimes I feel so inadequate to care for them, yet all I can do is advocate, pray and try not to worry. God is leading them and they are taking on more responsibilities. I also do empathize experientially with some of the body changes and health challenges they face because I too have a neuromuscular condition, It feels as though we fit together well in emotionally understanding one another. I have been trying to think ahead and secure some things for the future, but I have adapted to life where depending on God’s faithfulness has proven to be the best way toward peaceable goals. The verse that many use to hope, Jeremiah 29:11, tells me that God has a plan for each of our lives. Prospering us does not mean getting all my wants or desires met. It may mean for me that instead of continuing to teach in a classroom, that God was preparing me to have understandIng for guiding my adult children, or it may mean that God would show me how to be dependent and accepting and at peace with my life and to strive to share it with my children or others. I do not know God’s plan, all I can do is give my life to Him, in exchange for acceptance and surrendering to His will. Yes, I do life imperfectly but I have a for giving God who has given me so much. God has never been the one to harm me. This world has been hard, but I can offer him what I have. He has become my hope. It took me many years, to find contentment in the moment. I am very concerned often about my children’s future, my future, but I  try to trust, by faith that He will be with us each step of the way. In fact, I can’t deny my concerns because for the past few nights I have been awake a lot, crying out to God to reassure each of us.  

Jerhemiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future” 

Matthew 6:25-27 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life.”

Sunday....

 I have some important appointments in the upcoming weeks for myself. I’m thankful that I’ve been able to enjoy this summer so far. Breathing can be a challenge but I usualLy reserve going out after 7 pm to work with my growing deck garden. In the next few weeks I will be going to Hershey twice to try to understand where things are currently systemically. These busier days can be hard and it’s been hard to sleep. I’ve been waking up between 2am and 4am. recently. I take medication at 11pm so I’m getting less sleep. I have pain that I try to push through, but then I struggle to rest at night because the pain gets stronger. I’ve been praying about this device that the urologist is considering placing. I’m not sure I have a peace about it,  I just had two uti infections, fevers and I’m going to need more input from a doctor who has treated me longer before I proceed. I saw one last week and he believes that my neuropathy throughout my body, is what is contributing to these intense and sometimes sensitive matters. He did not recommend this type of device and procedure at this age and stage of my NeuoSarcoidosis. Neurogenic pain has been hard for me to tolerate and it’s hard to imagine living with it. There are so many nerves in the body and sometimes I wonder if or when it will die down. I keep searching for answers. I do not tolerate many pain medications well. The last medication I tried was not a good fit. I want my head on straight so life makes sense and I can have clarity, yet pain can rear up so fast and I’ve learned how to hide It from others, stifle it or suffer in silence, Distraction helps, but only for so long. I’m focusing on that this morning because I really pushed beyond what I could tolerate yesterday and now I’m having a very difficult time. I can’t imagine It getting any more intense. My face and right side of my body has had some painful blistering and rash pop up. I’m really trying to progress forward in thought but my body is resisting.

I wrote a lot of the struggle, and I know each of you carry burdens, you may not share, Know that I care. Thank you for reading about my journey and for your acceptance and community you offer to my family. I feel tired, discouraged this morning, but I also am grateful it’s a Sunday because I can be part of a church service where a Hope can come into my home by simply joining in with others that have their own journey and are walking through life together. 



Journal entry by Debby Larimer

Happy 4th
My new urologist at Hershey spoke to me about options after interpreting my recent test results. The recommendations had different levels of treatment. After his breaking down what could be a possibility, I agreed to an additional procedure where he will try to stimulate the nerves. A form of sacral nerve stimulation. I’ve had so much pain and dysfunction with pain in this area that I almost don’t want to risk having this create more. Although it could help the pain. This disease seems to have either invaded or affected almost ever organ. I’m not exactly sure how to proceed in these newly diagnosed areas and I’m not even sure if I’m a candidate until I’m have more testing. This doctor was rattling off so many terms and it put me on information overload. If I’m a good candidate,  this surgeon could place a pacemaker-type device at the base of my spine that might stimulate the nerves, help with pain, and perhaps down the road change the way my bladder empties. At the beginning of August, I will have my first procedure where they will see if stimulation to this part of the spinal cord is even possible. The specialist will also attempt to plug and unplug the SPCatheter to see if the stim will also effect how the organ work and helps me control inflammatory and nerve disease.  I have two Hershey appointments this summer and a few with my LVHN physicians so perhaps these will help keep me on track and help make decisions.
On a similar note, I’ve had some additional nursing visits because I started with a fever, aches, chills and fatigue. Friday night, the nurse got in touch with the doctor on call. The dr called around 8pm and really wanted me to come in to perhaps to see if I needed IV antibiotics. I finally agreed for another weekend nurse visit and she started an antibiotic. I have been feeling a bit  better but today my temp was still there closer to low grade but I’m on an antibiotic 4x a day. Hopefully it will kick in.
Jenn did so well gaining weight but recently lost more than her gain. Some from her oral surgery but it’s such a struggle for her to resume her daily diet. Being back at work helps her enjoy eating with co-workers. She drinks high protein Boost in between meals. She eats but apparently not enough for her metabolism, so she dropped to about 90 lbs. In a week, Jenn and Geoff will meet a neurologist at Good Shepherd Home as part of the MDA Clinic. I’m glad this opportunity is available. I’m hoping we gain more info on Myotonic MD and how they can keep their strength up. Brittany will be attending later this month. Praying for healing and help and hope. Each sibling is affected differently, uniquely but also alike. 
Like you, we are trying to tolerate this heat. This summer I like to go out on my deck in the evening. We just celebrated Brittany’s 26th birthday this past week and had an indoor picnic yesterday.
Blessings and love to you all.


Journal entry by Debby Larimer

Last week I had some testing at LVHN ordered by the pulmonologist (lung dr). I also needed another Covid test prior to my tests. That seems to be standard now to be tested a few days ahead before entering the hospital, even as an outpatient.. I had a series of breathing tests sitting in a glass box huffing and puffing. I also had an arterial blood gas (hardest part). I then went to ultrasound and this was for a closer look at the diaphragm to see how the muscles in my core are working. I will get a phone call to follow up the results. 
Getting this coordinated with the office and then organizing the rides was answered prayer. This testing was was ordered at the start of March because of observational findings at my office visit.  Well. I got through 3 months, including a bout with pneumonia and a recent hospital stay despite the ongoing struggle, I made it through and trying so hard to keep up the strength. In any kind of weakness (or pandemic) He is the strength and I see more evidence of how God faithfully sustains us. I have been developing more of a seal-like cough that is not an infection, but most likely inflammation. One of the agreed upon plans was to try to get me treated with the specialist at Hershey earlier then November and God went before me and took care of this detail. I am going back to this specialist July 28. 
I needed to travel to Hershey for an out patient procedure with the urologist that I saw back in February. I went last week. It was a busy week. This exploratory procedure was previously scheduled right around the start of the pandemic but needed to be rescheduled more than once. I didn’t see my dr for this, but I will meet online on July 1. I didn't expect quite the discomfort I had during this test but the data they got will help with decisions. During the testing procedure the degree of my spasms came into play. The P.A. told me that she heard and read that spasms can be as intense as birth labor but this was the first case that she viewed contraction-like spasms in a patient on her monitor. There are many many times when my ‘laborious‘ pain and testing does not indicate the intensity. Not just for myself, but for the countless others that live with ongoing chronic pain. This physician assistant that was preforming the test procedure told me that the nerves in my pelvis, UT and and bowel have diseased nerves creating the pain. She shared that the avenues I have tried with my pelvic floor or paralyzing the bladder would not help control the pain because the granulomas and inflammation that have damaged parts of my central nervous system have affected my spinal cord and small lesions on my brain contribute to neurogenic bladder and neuropathy. My bladder anatomy has been ‘altered‘ and diseased. The muscles no longer pick up a signal to contract, release etc.  I have no signaling but instead severe pain from the nerve damage. It’s not just my bladder but Inflammation etc also impacts other parts of these lower pelvic areas like intestinal etc. The has has become a difficult obstacle but it’s been becoming more apparent why. It doesn’t look encouraging to reverse the Subrapubic catheter but the doctor may have an alternative for emptying. I am still hoping in prayer that the urologist might have a better way to help me empty my bladder without having to carry an extra “purse“ or bag that is hard to disguise. But the biggest concern for me is how to alleviate the pain. When it flares up throughout my nights and days, I can’t hide it well. I usually bear down, clench my teeth and moan.The problem intensified close to two years now. Like us all, I try so hard to hide the pain from others and focus on those happy moments when things are more tolerable. Adding to the problem right now, Is that due to low platelets, I experience a great deal of bleeding at this site. I have also been struggling with repeated uti, bladder and or kidney infections and some newer stubborn bacteria resistance popping up.
The body is so very very complex. I don’t even realize this complexity until an issue pops up. I’m also beginning to try to grasp how much systemically this disease affects my personal body. I cant even comprehend all the ways God has sustained me. Of course I’m always reaching for more ..(Ephesians. 3:20) He is ABLE to DO immeasurably MORE than I could ever ask or imagine....when I finish this reading verse 22,  I begin to grasp that it is Not according to “Debby” but to His overall sovereignty and His will He gets all the glory! Not my will but working inter*dependent (relying on God, but doing my part)  my creator. 1Corinthians 12:7- 27... “Now to each one the manifestation of the Spirit is given for the common good... .
I bear His image. What I am only beginning to grasp is that His unimaginable sovereign control also involves His uncontrollable love. I know that through my journey, I have not always understood this. I spent years whining, fighting and wrestling but overtime, I began to see how even with my brokenness, wrong turns or choices God became my very best friend. That relationship became key because He gave me unexplainable blessings, lead me through the darkest nights and gave me opportunities to discover more joy. I have not attained wealth, I haven’t prospered as I had hoped to, and I was given about 40 + years of good health. But I am so much richer in this moment resting, and abiding in the knowledge that God is so indescribable present when I am experiencing joy or when I am suffering. I didn’t always have this gift of peace, but I know for sure that someday, maybe a long way off, that His timing will be perfect. His plan and will for each of my adult children will continue. All is well today and it will be tomorrow. I can do it in Him.
Each day in late afternoon or evening, I have tried to go outside to sit on my deck and tend to my plant kinder-garden. I found loved cracked pottery in the garage and glue back together for my flowers. Emily working with my aides because I’m able to be assisted on walks, cared for during pockets of time that can be designated.for family. She’s catching on. She went with us to Hershey and it was a lovely day. We made a stop at Chocolate World , had lunch and I picked up some items to share. It was a beautiful day outside and I’m so glad despite the testing and circumstances that lead me to this day, that it was part of this journey.
Old hymn close to my heart.


Not My Will 

1. 
If I ask for a thing that I should not ask for 
If I pray for a thing selfishly 
If I ask for myself and not for my neighbor 
Lift this veil from my eyes and let me see. 

chorusq
"Not my will, thine by done," prayed Jesus. 
May this same prayer be mine every day. 
When this robe of flesh that I wear makes me falter, 
Guide my steps, hold my hand all the way. 

2. 
If I murmur about the toil of my journey, 
If I seek for an easier way, 
If I worry because my load gets so heavy, 
Make me willing to walk in thy way. 

3. 
When my pathway is dark and my heart is so weary, 
When I feel all alone in this fight, 
Come, dear Lord, walk with me along this pilgrim's journey 
Be my compass, be my chart, be my guide.



Journal entry by Debby Larimer

During this week 10 years ago we made the move across Pennsylvania and began the move into our home here on Main St. It literally was the best “move” I ever made. I want to celebrate all that God has done in this family over the course of the years. Yes there were very hard periods but through these many ups and downs God was always there faithfully with  people and places that kept my children and I together. They went from teens to twenties quickly. They are now spreading their own wings. Praise God. Each day, month, year is a gift but I’m struggling to envision too far ahead. 
God is still at work. Since I have been home from the hospital, I’ve had a few appointments and the consensus has been to get me in with the Sarcoidosis specialist at Hershey. Prior to the Pandemic, the soonest they could get me in was next November. After my most recent care it seemed even harder to connect sooner.  Well this past Wednesday, I spoke to someone at Hershey and they were able to relay back to me that I will be able to start treatment in July with this doctor. I’m very grateful for this open opportunity to explore my options.
I have been having much more pain in general. I’m also having a difficult time with pelvic pain and bleeding. The infection I’ve been fighting will be monitored until I get back on track with the urologist at Hershey at the end of this month. I will have testing at Hershey in the urology department. I also have my 3rd Covid testing so that they can proceed with pulmonary testing, and testing my diaphragm muscles at LVHN. My chest, abdomen has new pain, bloating and periods of intense discomfort.  I have some diet changes that I hope will help. These next two months will not only have more check ups and check ins for me, but for the other members of my family.  
In a few weeks my 3 oldest children will meet with a doctor at Good Shepherd. They have waited a long time to get into a Muscular Dystrophy Clinic. Myotonic affects more than just muscles, DM1 can affect multiple organs and systems. I see them doing well but we don’t want to miss anything because perhaps there can be proactive help or therapy to keep up their strength.
Jennifer also had more oral surgery and came through this well. She will get some work done on her remaining teeth. She currently has some pain from an ulcer and the recovery from a total of 9 teeth.
Geoff has had better results with his apnea events and he is so determined to get ahead.
Brittany returned to work at our local grocery store. Jenn will also be back doing her job soon. Geoff has begun working with OVR and a program that can provide more adult resources. He is not returning to his last job, because he struggled with even the one day scheduled a week.  I’m praying he continues to grow and make a difference in his own unique way. 
Emily just turned 24! and has been a tremendous help. On weekdays she works 2 hrs a day and Friday, Saturday and Sunday she works 6 hrs. She is gaining confidence as a direct care worker and received her first earnings caring for her mom.  I hope to see her explore what she would like to do down the road.
My pain level can get pretty intense. I think I’m trying to tolerate it a lot of the time, but then nights like this can be difficult. I think pain is like that for most of us. I have learned that distraction, ice and repositioning help. The bottom of my bed broke more so I have begun looking out for different options and how replacing it should go . I don’t know quite how to plan.
I am awake tonight just thinking, planning, preparing for the next day when all I need to do is pray and try to sleep.
Thank you for reading, praying and supporting me in your own unique way.  No one  knows how prayers are answered. I couldn’t fight and do my daily routines if it were not for the connections that make up my day, and this life. 
God granted me longevity over these years.  I just want to soak up and enjoy what I can. I’m ok, but not ok, if you know what I mean?  I don’t have any solutions, but I do have questions. Questions I can’t answer tonight.
How can I be both joyful and be so uncertain, unsettled and even sad to face the future. I see God stretching me, my faith and well-being. Some days feel like a whirlwind to keep things going.

I’ll end with some  Psalms
Psalm 34:4
"I sought the Lord, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the Lord heard him; he saved him out of all his troubles. The angel of the Lord encamps around those who fear him, and he delivers them."
Psalm 121:1,2
I look to the mountains; where will my help come from? My help will come from the Lord, 
who made heaven and earth.

Psalm 119: 25-32
I am laid low in the dust;
    preserve my life according to your word.
26 I gave an account of my ways and you answered me;
    teach me your decrees.
27 Cause me to understand the way of your precepts,
    that I may meditate on your wonderful deeds.
28 My soul is weary with sorrow;
    strengthen me according to your word.
29 Keep me from deceitful ways;
    be gracious to me and teach me your law.
30 I have chosen the way of faithfulness;
    I have set my heart on your laws.
31 I hold fast to your statutes, Lord;
    do not let me be put to shame.
32 I run in the path of your commands,
    for you have broadened my understanding.



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 

Journal entry by Debby Larimer

Thank you for your ongoing encouragement, prayers and comments. This hospital stay reminds me that sometimes you find solutions quickly and you can be on your way, and other times you only gain knowledge (of what it is or isn’t) and hang onto the HOPE. I LONG for sudden healing, but Im also thankful that the prognosis allows you to come home and grow more. I’ve shared a lot of details of my day to day life., including this hospital stay. Thank you for allowing me to share the burdens and blessings I encounter. God does answer our prayers. Your kindness and support is invaluable. My family is really struggling because they were sensing a stability and finding ways to cope with their lives. Change is hard, inevitable, both good and difficult revelations. Sometimes these afflictions propel our spirits forward and other times bring us back to a new starting place. I get pretty comfortable when progress is being made, like a game board, life includes moving about to different places. We manage well with moving toward our goals, but learn about ourselves when we deal with uneasy powerlessness. For me, the hospital is almost like being sent to jail on the monopoly board and going home is the goal, even if it takes me to a new starting point. If I broke my leg, maybe I would be more optimistic in this moment because I would know my leg would be restored and I’d be on my way. But when your drs cannot offer you more than palliative care and experimental ideas, it is challenging. Some treatments can not be done in this hospital so it’s a wait, watch and not grow weary. These treatments can also make the long standing, chronic and progressive illness you are fighting a whole new war. My goal is to still be in the game without additional pain, travel or complicating the strength and life within my home.
Accepting that the Sarcoidosis has evaded more organs, doesn’t take away hope, it just makes the fight harder.  The hematologist here was honest about getting care systemically at Hershey or travel further. But for now I’m glad to be able to make my own decisions and regain a new level of what I’m up against.  There are not easy solutions and life has limitations. The hematologist shared that platelets May continue to be needed. It’s not yet in my bone marrow but they are keeping an eye on it. If my spleen continues to enlarge they may remove it. I will be watched closer for clots and my heart concerns may need further attention but I need to give the care it needs. But I can accept also its limits and have hope at the same time. Illness is such a battle because you are working hard to do the simplest things. My body’s immune cells, blood cells, organs are trying to shut me down, and I’m fighting in my soul to do everyday mundane tasks.  I KNOW God can heal me completely but I praise him that he sustains me in this moment. I have a peace because my time is in His hands. I’m hoping for the best but also feel God will equip me and my family in the journey wherever it goes.
Here in the hospital I am so GRATEFUL for the staff around me, and those who help me at home. Patients work very had each day to get through because  it takes a lot of energy to survive and thrive. I have been losing weight and my albumin continues to drop, and the answer to why is because my body is working hard and has to burn a lot of calories. I have the privilege of eating a lot (except too much cholesterol). I want to maintain at this point. Jennifer, my daughter fights a similar battle. No one wants to be in here or ill because it’s more of a minefield for vulnerable immune systems in a hospital. Sickness is not a choice you can always control. It can be a lonely place or you learn to depend deeper. I feel both emotions. Fortunately I am so grateful I have the supports in place so that I can work on this in my own home, surrounded by my family. Others may fight battles for value and quality of life in a respite or nursing home. I get to GO HOME!
I got a terrified call from one of my children last night. The heart of the matter that was  shared, gave me a window into what it is like from their perspective. I know I would feel frightened if I wasn’t the patient but instead the loved one. No one desires to be in either shoes, but we learn empathy and how to extend grace to one another. When any of us lose control and can’t make sense of life’s circumstances, we may learn to trust or divert the control to something we can make sense of. We have to choose how to cope wisely and with tools. This quarentine and CV-19 has created fear and isolation, and loss of control and I know it has been hard on everyone but we can press on by understanding that we may have been sent home on the game plan board but eventually we can roll the dice and move forward play by play with God’s help. Life is better when we do it together. Love helps, gives, protects (1 Cor 13). 
I see it from a unique perspective in here. I do believe medical teams are prepared for whatever but we all need to be in this together. Protect ourselves with awareness and common sense but not fear the unknown. People STILL need people, each other, however we make this happen. I will need to stay close to home, but I look for ways I can still contribute in my own unique way and hook up with others. I am not alone.
 The staff has given me sound medical advice, some direction but it is my battlefield here and at home. Life isn't static, and sometimes, I don't  always embrace the value of the strength I still have and all the blessings of the people around me. I grieve for the uncertainty my family and I have had with illness. Yet I rejoice over all the quality time I still have with each passing moment by moment circumstances but it stretches our faith and bonds. God’s grace and provision is good. No question...each day, year and every moment is a gift. I have to trust my Save-ior  to fill in the gaps of loss and the unknown.
I will be speaking to my care team sometime soon, my transportation is arranged (thanx Barbara Rader)  and hopefully heading home with a plan of care. It’s hard and I’ve had discouragement because the plan isn’t one that fixes me but experience has shown me I have gone beyond medical expectations. I hope for more medical miracles.  I long for healing but I am leaving this place with new insight and gratitude, knowing God has been good despite any obstacle. This grace toward me feels amazing. Love you All for being there as I try to figure it out. 

Song in my mind...
If He carried the weight of the world....
Song by Scott Wesley Brown
There is no problem so big, God cannot solve it
There is no mountain so tall, He cannot move it
There is no storm so dark, God cannot calm it
There is no sorrow so deep, God cannot soothe it
If He carried the weight of the world
Upon His shoulders
I know my brother, that He will carry you
If He carried the weight of the world
Upon His shoulders
I know, my sister, that He will carry you




Comments Hide comments

Journal entry by Debby Larimer

Over night I struggled (unknowingly) with my heart rate. Groggily I remember a doctor and nurses attending to me.  They hooked me up to more monitors, did an EKG, turned my O2 up, put me on a pulse oximeter, and had Cardiology visit me this morning. The doctor during the night stood outside my room at one point then assured me that my EKG looked ok. Apparently they were picking up some things on the heart monitor that suggested bradycardia due to a very low resting heart rate and when awake I have consistent tachycardia so I have both extremes.  The cardiologist said they will monitor in future and talk to me after the nuclear stress test to see how the blood flow to the heart is. For the heart rate they don’t think as of now I require any treatment. Jenn, my daughter experiences conduction problems and has bradycardia arrhythmia with her heart rate. I am praying it will disappear or resolve with time. I need to place it in Gods hands

I met with two Hematologists. I have Sarcoidosis of the spleen and liver now. This news was hard for me to wrap my mind around. They told me that they believe when Steroids were stopped last year, even though to the eye I was thriving, the sarcoid became more active in other organs . My liver is affected but my spleen is more of a concern. Due to the inflammation and formation of granulomas, it is causing my spleen to swell. These grandulomas are clumps of inflammatory cells that form in organs due my overactive immune system.  It’s hard to understand why my immune system is hurting me instead of protecting! The accumulation of these granulomas within any organ affects the function of it. Dr Hand explained that my platelets are low, but it has not gone into my bone marrow. Treatment needs to be done (and slow process) at Hershey because this is where the Sarcoidosis specialist is. My appt isn’t for about 6 mons. I’m glad because with this pandemic I might have needed to wait longer. It isn’t something they can resolve overnight.  If they treat the Sarcoid too aggressively with chemo related drugs it may create other serious problems. I’ve had these issues in the past where aggressive treatments lead to more severe situations. There is no cure or medication specifically for Sarcoidosis especially when it affects multiple organs and systemically. They said it isn’t something that has a quick fix. They will try to get my platelets up and hope it doesn’t affect my bone marrow. Slow and steady and PRAY for healing. 
They don’t have an easy solution for the other areas affected by sarcoidosis either. I need to work with Hershey or my care team if things continue to evolve.
But God!...no matter the circumstances, God holds present, this process and in the means to an end. I’m trying to listen to my doctors but if they share a concern or fear tries to enter, I can remember to say “ But God” plus the opposite. My example is....I get discouraged, BUT GOD encouraged me. My body is ill, BUT GOD is healing me within and He is my hope for healing. Sometimes this is hard to take captive these thoughts and circumstances, But God gives the strength to overcome. The enemy will not get the last word.

The enemy will not be victorious, even in any disease or death itself. God needs to be my refuge and strength! I am not chained to this illness, I have victory and because of God’s grace, I have a future. I will return HOME, maybe not today but soon and very soon, All is Well (AIW). There is HOPE! Praise God for the healing and improvements that happen all the time that we do not see, feel or notice His touch. While here I get to think and pray about others in the quiet moments, even more in those weak periods. The Spirit helps by praying or intercedes for a need.  Romans 8:26....”Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.”

2 Timothy 2:9 . .for which I am suffering even to the point of being chained like a criminal. But God’s word is not chained.”

Matthew 19:26. “Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”



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.

Comments Hide comments

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

SVG_Icons_Back_To_Top
Top