Journal entry by Debby Larimer

This past Sunday, a friend offered to take me to church.  I made arrangements and prayed I would have the strength.  The weekend came and I discovered I had no new oxygen tanks.  This never happened before.  All 16 had been used and I would need tanks to make my visit to Bethany Church.  Oxygen is only delivered on weekdays, and this was the first time I ever ran out without noticing. . We like to call when I get down to a few left. I have a compressor that delivers unlimited oxygen in my home, but to leave the home I need to use tanks. In the beginning I used a small portable compressor that I could charge and take with me, but that was when I didn’t need full flow. The  portables deliver O2 when you sniff or breathe in/sniff, where as the tanks are flow. I may be able to return to that, if my lung capacity gets stronger.  I also use Bi-pap, which is a home mechanical ventilation system that helps my lungs and assists with breathing.
So because I didn’t have any new tanks, I did not want to be limited to home so my friend, Chris and I tested each tank on Saturday for some remaining O2 in it. We found a few but there was no guarantee they would last. I decided to continue with my plans to attend  the worship service.  My attendant and I were picked up and we were able to get situated for the service. We even found a bench to keep the extra tanks under.  Every thing went so smoothly and I had enough 02. I know in my heart that God gave me the oxygen coverage I needed to manage...a miracle moment. 
My family enjoyed a delicious “southern boil” meal from the church have was available for pick up following the service. Before I knew it, we were blessed and headed home. They were able to deliver new tanks on Monday..  
I am able to tolerate my pain for pockets of time and certain distraction have been a helpful tool, but pain and new painful symptoms seem to unfold . 
Yesterday I had an appointment with a new pain specialist and he was easy to talk to.  When I shared my concerns, he told me he too would recommended going to a major hospital and seeing at least one doctor who treats sarcoidosis, preferable a neurologist or rheumatologist. He said, It’s rare  to come across cases like this. I know he doesn’t know me well yet, but I’ve been hearing this message to go elsewhere.   He also said he doesn’t want to try anything in addition now, because I am experiencing too many central nervous system side effects. He can’t do anything to my spine because of neuro findings. My gut says I am having these neurological findings because they are aggravated by one of my medications. 
 However, I’m really going to pray for answers to whether I continue to wait, and then move ahead with treatment out of area, only when I feel led to do so..But I don’t want to put myself or others through that. 
For now I’m content being closer to home, outpatient, just appreciating the season of life I am in. 
I’m so tired of all the testing and probbing.  My abdominal pain and neuro findings are my two prayer requests.
I began getting information about a change in the way I get my healthcare. It’s not very clear yet, but they are combining my inhome care with healthcare starting January. I am hoping I can still work with the doctors I have now. The program is for people receiving any type of nursing care or long term care. My age has something to do with it too.  Pray that this is not disruptive to my care or others.
I have been up a lot during the night sick, coughing, spasming with pain, and nausea. I am hoping to see it pass. I’m not going to attempt anything but rest this morning..

Journal entry by Debby Larimer

How is everyone getting through the heat?  We seemed to have had a cold, damp, wet period and now it’s been hot and dry.

Thank you friends for any prayers, support and suggestions.   I have wondered if my pelvic pain might be triggering the nerve pain throughout my back, and down my legs and feet. Muscle contractions involuntarily twisting and moving. My feet are where I see them but can’t control or stop them. I equate the cramping and spasming with muscles  in more than just the bladder. The neuropathy pain seems to limit me more than muscles . My migraine and daily headache pain have been breaking through more, but I still get some better relief periods. 
The areas of pain hasn’t really changed, it's more the intensity of it. 
It just occurred to me, that I have been looking at my bladder or pelvic issues as something that 'needs' correction, or wondering if the pain is alerting me of more ‘acute’ or serious concern, rather than recognizing it has been ongoing or more chronic in nature, which is a hard pill to swallow. 
I left a phone message with the urology department yesterday to report that the process of changing the catheter is really getting intolerable. Even when it's completed, it is not enough to function or move forward. Then I recognize it's time again next week to change it.. I was looking for any advice to get through it. It takes a toll on my endurance. The pain makes it harder to stay asleep and I have intermittent nausea. The urology office did call this morning and the nurse explained that the Botox and Oxybuynin is what Dr V can offer and referred me back to my PCP and pain management.  I am really seeking direction from God and the  gut feeling of what a next step. I have needed a catheter for around 8 years. What changed that is causing this degree of discomfort more recently. It really saps my energy and endurance.
I see a new dr with pain management at the end of the month, because my previous PM physician has moved, and I have a scheduled appt. with my pcp office in September and there is communication with her office.
I have wondered too, if some of my adjustment of going off or going on meds is mixed in with the heightened pain and senses/sensations at times. Also the confusion episodes . This might make more sense. I will discuss with pharmacist next time. 
I was very relieved that things were ruled out and tests resulted well last month. I see how things have improved with the whole care team approach. That gives peace among the pain. 
Right now, it is not about chasing a cure that keeps you going or uncovering the what or why or how? Acceptance, absolute surrendering to God is my goal. I can’t control its course, but I can look for the joy Moments in it all.  Right now I need to refocus and go and do each day the best as I’m  capable. I’m trying things where I have success and then other times I have to carefully calculate each move. So many times, I want OUT of this body and want the body I used to have.  It’s the same, but it broken and in need of replacement parts.  But broken things can still be a blessing in spite of it all. God restores, maintains and renews.
 I have wondered, if some of my adjustment to new medication and changes is mixed in with the heightened pain and senses/sensitivity emerging.  
It is what it is the moment.  I may not like the limitations but I’m working with them to overcome, Warrior on and finish the course! In fact I hate the limitations but I have learned to try to find the acceptance “with joy”.  It doesn’t always feel like joy but Im waking up today and there are many things to give God gratitude for. 

Summer is going fast and Chris rented a van for the 5 of us to visit Knobels for a ‘day vaca’  on a cooler day over a week ago. I am glad we coordinated that because my adult kids enjoyed the afternoon and made memories. 

What makes me feel like more content is when my kids do not pick up on my distress when I’m with them. At Knobels I was having a very painful day and it’s hard when you’re beyond uncomfortable in public. A smile can sometimes be the only way you can choose joy in spite of it all. They look back on activities and don’t see me squirming etc.  I hate being  this Mom. I am doing each day with the tools that I have.  I always tell them whatever the situation is to trust that “All is well!” Anytime there is an emergent situation we have recited this. It will be well in good times and hard.  I want them to know that when they are frightened or deal with discomfort that God is where we find relief in knowing whatever we face, All is well.  God is sovereign of all. Just preaching to my own heart.

I  enjoyed visiting Emily and Brittany at workmire recently. I always enjoy observing from a bit of a distance to see them. They are a bit surprised to see me, or should I say...embarrassing to spot me. Geoff is trying very hard to find a job. I really admire his persistence and growth in his process . He did some ‘mr fixer up” in the kitchen. He was shucking corn 🌽 this week. Jenn made a stir fry meal last night, Brittany made tuna melts for lunch yesterday. They are developing self confidence and autonomy. Jenn is willing to try new things independently. She has worked at the Macungie Farmers Market with Love Ran Red each Thursday. 

For me , Sometimes the daily struggle, or the moment  or circumstance is where it gets hard, but then God’s direction and assurance is hope.  Even if the moment or day is hard or you can’t quite put a piece to the puzzle, God remains good. Hold on hope is here and if you can’t see or feel it, it’s on the way.

Matthew 11:28-29. “Come to me, all you who are weary and burdened, and I will give you rest.Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:182 Corinthians 4: 8-18

We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you. ...

Matthew 6:25 

“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?

Ephesians 6:11

Put on the whole armor of God, that you may be able to stand against the schemes of the devil.

Journal entry by Debby Larimer

Last weekend I was able to attend a festival across the street with some of my family. I was talking to a vender that made art from silverware. I always admire the spoons because of a metaphor I learned.  I asked this craftswoman if she knew about the spoon theory? She said she actually made a spoon for someone that said “One spoon at a time” That really sums it up. If you have ever had an long standing chronic illness or had to fight back from injury or illness, you might relate to this metaphor to share how strength each day is what you use to fight. There is a gentle fine balance between when to conserve and fight.   If you’d llike to read about this example written by another sojourner, you can read it or share it if you like at ... or just search, “spoon theory” 

It’s just an example of how a woman explained her illness to a friend. If we over withdraw on the energy, stamina or strength it greatly impacts our life.

Since Sunday, I am having a harder time controlling my pain and moving about and Im failing to tolerate it well. . Sleep at night had become a bit easier for awhile, but the pain has really been disrupting this right now and robs me from catching up on it.  Tuesday, The nurse was here to change my SPCatheter and I shared that the pain in that region is very sensitive and the steps other doctors or nurses have done to get it in place. I can’t describe the pain that is growing there. It was so severe as she removed and replaced.  It’s NOT that nurses or doctors are causing this intentionally, but it has grown to feel like a dagger and it is a pain that is hard to compare to any other experience. I use to be able to tolerate it and proceed with the day.  I do believe I have developed a tolerance for pain over the years but this procedure has become unbearable during it and I now struggle a lot after and throughout each month. Last week when I had the biopsies and another procedure I tolerated it well to this doctor’s and my relief.  THERE is something wrong when I have pain during a procedure that was pretty routine over the years. It is hard to “do this” pain with so many unanswered question and not knowing what is hiding from sight. It is now a growing nightmare. I can’t refuse the procedure because I risk infection and it’s what I need to live and keep my kidneys and bladder/bowel functioning.. By the end of the month my output is dark and disgusting and even though the pain is overwhelming to work with, it has kept me from another vital organ from failing.  I was told in February to get a second opinion in Philadelphia or a larger hospital but I wanted to rule out other things. I don’t even know how I would get there or if I can travel well. I’m not sure my doctor know exactly what is occurring, yet Im honestly not sure I can tolerate it well now, or each month. 

I’m now beseeching God for answer to please show me what my next step is. Do I try to speak to one of my current doctors or look in another area for urology care and a neurologist? I have a neurologist now but I was told by this department before that I need to seek more specialized care, but I have seen God use the neuros I have had in these past few years.  Do I just wait? I feel so misunderstood in this all at times.  I’m seeing this when Emily too tries to deal with her hip and feet pain. It is not well seen or understood since she was little. She has gone through therapy and tried medications, but the only thing that brings her some relief is to not be on her feet on more than 4 hours at a time. She continues to check jobs that won’t require her to be in her feet. I see her inner drive to go forward. I relate  more and feel compassion because of my struggle.  I wanted to fix my children, but only God can guide and show them the right routes to go. Back to the suggestion to refer me to a Philly...I just don’t have a peace about venturing on a ‘Philadelphia story’ until I get a go ahead that I feel at peace about. I’m afraid to go this place in my head and heart.💜. I also have another attempt to paralyze the bladder in November.  I’ve had this 3 x in past two years and it’s the strongest way my doctor knows to help, other than a radical procedure, she mentioned to remove my bladder and all it’s nerves and replace with an artificial bag. Not there yet! because I am always fearing I will need bowel surgery because I’ve struggled with emptying that and the bleeding has not stopped. My bowel and bladder have been a big source of intense pain for me and it’s a very sensitive subject.

Good news is that I have been reassured now that the small mass that was tested is not cancer, it may be sarcoidosis but this is new territory. I don’t want cancer again, so I’m glad, but I don’t want any added suffering from sarcoidosis or the autoimmune soup inside me. Why does it get so complicated. I don’t like seeing my children suffer physically, emotionally or intellectually either, or loved ones or friends, but we all suffer as humans. We suffer and bear burdens together, Just because my children struggle to make friends and live in a world that asks people to follow a certain map through socially acceptable hoops doesn’t mean they can’t change or find new ways to fit the norm. I dreamed of doing awesome things with my children or see them do things like driver training, college graduations, marriages, extended family growth but inside I know they are capable of being hard working adults. I believe, they have FAR exceeded my expectations.  They dreamed possibly, of a two parent family that would offer them more to this life . They got me and we have chosen to wrestle life and love out together. Maybe someday they will do some of the things their heart still desires but until then, I love them where they are at and, I pray, pray hard that others can continue to accept me where I am.  We all hope for the best and I used to often get caught in a checks and balances, trying to fit in, measure up. Im glad to be learning that families are always changing and when one shakes that mobile of our closest relationships,

 We all feel some unbalance or our lives go through change., The ripple and that is part of our struggle with our friends, acquaintances and loved ones battles hit us hard.  We are not alone, I may feel it, but I have experienced and internalize the true TRUTH that can give me strength to hold onto until the struggle calms and we all we reevaluate how to press on. 

Sometimes steroids, especially long term, can do more damage than good. I have been being gradually reduced by my rheumatologist and it seems to be causing me to flare up in different parts of my body as the dose decreases, The decrease was halted again this week. I will stay at this dose for now. This is another med that contributed to terrible side effects and I want to get off of it but at what cost, if it’s effective in keeping some problems at bay. Because of recent flares, and the testing +, procedures,  I have failed to do as much physical therapy and so I try harder to strengthen, so I won’t have to fear losing ground. 

The balance of pushing and knowing when your body needs rest is a delicate balance. Days like this I push through in the best ways I can, but if things get too intense and then my central nervous system reminds me that I’m creating havoc by pushing too far. 

I also need to return to the GI doctor to discuss my swallowing, bowel bleeding and decisions that might be necessary. The doctor still wants a repeat colonoscopy after last month’s bomb. I will need a different or longer prep so they get the results they will need. I am dreading this test, but maybe it will go smoother.

My insurance just vetoed or denied the preventative medication, Emgality for my complicated migraine and nerve pain from my spine, so I have ice on it every chance I get and don’t leave home without my dark glasses  The doctor explained they are trying again.  I have terrible nausea, wrenching and eat when I can tolerate. My head and body pain make me feel sick. I don’t think my eating has changed, but my weight continues to come down. Last week, I was reminded by a doctor, how thin my legs are. I’m not under weight and not trying to lose but I have muscle wasting and some concerns with the pace I’m losing the weight. On the flip end, my doctors are thrilled that the fluid from CHF is not affecting my heart or lungs. I haven’t had an infection since March and I have self confidence coming back because I see glimpses of Debby again, myself again. It’s a hard line because I struggled when I was younger with body image and depression in my marriage. I need maybe a few extra pounds and cushion if extra calories so if I flare or get sick, I can fight.  I’m hoping it’s all for the good. 

It’s undeniable when you recognize what power you do have and just how powerless we might feel when we face those unexpected parts of life.  When that control and self sufficient way of operating is removed .,whether it’s the body or circumstances in life, it robs our choices because i fight to have my freedom and independence back.  I believe we can take it all for granted until something like illness creates losses and the need for help is needed because you have no choice. I can surrender absolutely and let go by letting God or I could choose to get bitter rather than better.  It’s a fine line but we all do the best to operate in His strength and not our own, contentment flows through us.  My daughter Overcame so much as an infant and preschooler medically etc and she claimed this verse very young . ...Philippians 4:13 “I can do all this through him who gives me strength” For me, I believe,  it’s not a verse that boosts us up or self boasts about powers we have to remain in the drivers seat..  I see it is as a verse of being content with the strength we do have or hope to have.  It’s saying, I use the strength, any strength I have to live my life abundantly...through Him who grants me the strength like the Israelites received manna to sustain them through their afflictions....God provides His strength in and with Him.

I love this quote by CS Lewis ...

“Some people feel guilty about their anxieties and regard them as a defect of faith. I don't agree at all. They are afflictions, not sins. Like all afflictions, they are, if we can so take them, our share in the Passion of Christ”  I have also shared before a quote by Hudson Taylor, the 1st Inland China missionary..  I learned about him when I served as a summer missionary for CEF in my early 20s “God’s work done in God’s way, never lacks supply”  He sacrificed more for the cause of missions Hudson Taylor was willing to surrender all that God had given him for the evangelization of the Chinese. Nothing took a greater emotional and physical toll on his life than the loss of his family. he buried six children and two wives.  In just one year, he lost two children and his first wife, Maria. Her death hurt Hudson deeply., He then was robbed, beat, captured, grabbed by his hair and insulted. His ship was destroyed at sea and they lost belongings. During a time when a crowd gathered to witness the mistreatment Of Hudson and his fellow missionary, he began handing out the copies of the Bible he had with him and said , ‘We reminded each other that the apostles rejoiced that they were counted worthy to suffer in the cause of Christ.”
“..our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.” 2 Corinthians 1:7

 When anyone has a history of many drs, procedures and hospital stays, you can get conditioned to want to avoid additional intervention and you plead with God to spare you and others the details, yet it’s your reality.  I also know complicated issues don’t resolve in the ER. I see my doctors struggle with what to say, or how to say it.  I want to squeeze out of them any cure, any relief, or any reassurance that this will not get any worse, I do not like hospitals or to be prodded in any new ways. 

I see a new pain management doctor next month and I want to discuss non invasive pain options and no opioids. It wasn’t easy getting off the more long term-toxic pain medications last year, but as I did a lot of the brain fog was lifted and my body needed that back to do mental things in life. I know I never want to go back, personally because the side effects added to my discomfort and abilities..

For whatever reason, maybe lack of sleep, I feel myself wrestling with a bunch of discouragement and I’m trying to get past it. I do like disappointment or the discouragement.  It’s like an uninvited guest. I spoke to someone yesterday morning that helped me get truth back into my head, but my heart just feels heavier today and I don’t like this place. I like the Debby that has the Living Hope within. I think we all like ourselves better when people see our strengths. I get discouraged and I think many of us do when we don’t measure up in our abilities, or can do things that are part of ordinary, daily living. .  I have to surrender and just trust trust more and not lose faith. God has given me many more days then expected. I am learning more, and doctors learn more too as they “practice medicine” which is a good thing but also a trial and error. I can’t think today about contacting drs, or tests or further possibilities. I need strength to just breathe and seek healing strength. I know God doesn’t allow suffering because there is something wrong within or with me, My sob filled moments of questions and wondering why God takes things away in my life, or any of my children’s life, or a friend’s child who just got an uninvited diagnosis. Instead of seeing them loses, I have hope things oddly become a gift. I can testify that God leads us closer homeward toward Him.... much closer at times than we ever imagined and never invited. We don’t see this unless we look at how EPICally awesome our Gods love is. , This isn’t something we can see often in the midst of loss or in tragic or unsettling life experiences. We see it in the journey.

 I only have so much to fight back with,  and I save that for “my job” ....attempting to keep guiding, shepherding my adult children and just going about my day. That has been harder this week. Last night we read another chapter of a fiction book written my Frank Peretti.  back in the late 80s called “This Present Darkness”. It takes your imagination through a story of people’s lives affected by the forces of good and evil (angels and the demons) in the Spirit realm. 

Ephesians 6:12 “For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

My soul desire is to see my children blossom and bloom more and more into maturity. I know God can do it without me, but I like to think, He can still use me and the other supports they have to move them into greater independence and to gain emotional+Spirutual stability. I think we all strive to desire that our children grow where they see less of us and more of Him. We want baggage and bondages released, We extend forgiveness and hope that they can act this out in their lives, so they get freedom, heal and find true peace. I need your prayers for their health as well as mine.  God has shown me just how much children and youth are the “prize”, the blessing.  Only He could give me this, because I go through all the same frustrating moments of reteaching, respeaking, rephrasing and praying that on their own they can be successful. I’m very tired though and I’m not sure when to surrender or fight in days like this.  I can only do my personal best and try harder.

I was reading a few verses in Psalms 30 + 149  that has always made me envision God dancing and singing over with His love. Zephaniah 3:17 : “For the LORD your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”

 Also I have been able to see glimpses of how out of touch with reality I have been. Without going into it all, I have not worked for 13 years and my experiences socially in society are more rare.  I used to write for newspapers with a wonderful Christians writers group, I attended groups, workshops and Bible studies. I ABSOLUTELY loved working/teaching/mentoring children and I will never get over some of this loss , I was crafty, I was a leader.  I received counsel but I also got training and certificates in therapies that helped women and children. I did public speaking. I sought to live the life, lifestyle, that can dare us to dream. I reached goals which I felt gave me worth. I wanted to be a thriver, survivor, overcomer and I wanted to know my life had meaning. I felt I was where I was for a reason.  God has been teaching me, pushing me to fight and allow Him to take me closer to Him, when I wrestle with the physical pain and unsettled thoughts. I really try to show a different side when face to face relationally. I just want to fit in and be able to hold my own.  I don’t want to die as an unsolved mysteries in life,, 

 I LONG to socialize more publicly but I’ve learned If I get sick, that can take me to a critical place or It can also cost me my life. I hear this reality all too often. I also see this with my children.  They are fighting MMD and I treasure each day and pray for a bright future and that rare diseases will find cures, medications that can help and awareness. I just mentioned my lack of social awareness to say, please forgive me when I try to simplify life in general. I sometimes am awkward out in this newer, stranger, more challenging world we all live in. I think of Michael W Smith’s song, Place in this World. Lyrics below. I’m looking for ‘my reason’ and I need His light to help me. The world has changed while I was in my ‘coma like place.

The world is hurting.  I’d love to go be with people at nursing homes, rehabs, and behavior help places.  I can’t work, drive, walk, even use restroom ALONE. I’d like to see that change I have the faith. I see Gods love, mercies, and joy In different ways that I wouldn’t choose, but I know God has a reason and He is present with me. I long for my new body in all God’s glory, but i’m waiting and desire more miraculous moments for my family,  I sincerely have gratitude for what I did do in my past, the rich experiences I have had when people reached out to care about me.  God Gives and I want to be a part of giving back more,. Don’t we all, want to work in tandem with our faith rather than wrestle with the strain of pain and loss or see the brokenness in this world? I want more than the life I’m living.  Please Lord, renew my strength more and more. 

THANKS for listening and trying to follow my thoughts all over the place.  Thanks for giving of time even when you are trying to find your place in this world. ❤️💜.  

"Place In This World"
By Michael W Smith

The wind is moving
But I am standing still
A life of pages
Waiting to be filled

A heart that's hopeful
A head that's full of dreams
But this becoming
Is harder than it seems

Feels like I'm
Looking for a reason
Roamin' through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need your light to help me find
My place in this world
My place in this world

If there are millions
Down on their knees
Among the many
Can you still hear me

Hear me asking
Where do I belong?
Is there a vision
That I can call my own?

Show me, I'm
Looking for a reason
Roamin' through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need your light to help me find
My place in this world
My place in this world

Lookin' for a reason
Roamin' through the night to find
My place in this world
My place in this world
Not a lot to lean on
I need your light to help me find
My place in this world
My place in this world

Lookin' for a reason
Roamin' through the night to find
My place in this world
My place in this world

Journal entry by Debby Larimer

Thank you for praying or caring about this sensitive situation with me needing extra tests and care to rule things out..  When I went for my biopsy , I didn’t know what to expect. When the doctor came in and was looking over my notes and situation, she told me initially that I would probably have to come back after taking a medication that would soften my cervix and she likes to use twilight anesthesia because she would need to do a D and C to take care of lining and  then get biopsies in a couple places. She wanted to test endometrial area as well as top of cervix.  I told her to try because i was there and we made it there in a heavy down pour.  I’m glad she completed it all because the pain was not as intense as my catheter changes have become. It did trigger the radiating pain down my legs and burning but I’m learning that the low abdomen is all so close and this pain causing the bleeding might be complicated to get conclusive answers. It could still be a GI issue.  This doctor told me something validating. She explained that doctors are always learning.  She said most patients with complicated Sarcoidosis or some of auto immune do not live long enough to to study and learn about it. She said that her homework during this period is to find out if this could be caused by sarcoidosis because so many of the tests for this disease bring back inconclusive results that show how to treat. So they treat symptoms, findings and inflammation or with sarcoid, they treat granulomas or infiltrations which cause havoc on the immune system. Mine started in my lungs, then lymph nodes, spine, CNSysyem, heart, skin, kidneys causing other heart issues and its symptoms are internally blind to the unsuspecting eye. 
She shared that some of my doctors felt I would have ‘expired’. I’m not sure if we could pinpoint what treatment, test, medication, doctor helped me come more alive again.  They are seeing me stabilize and improve. (ready for ‘new and improved Debby). Each day when I wake up I do see with gratitude what God has done. So many people have supported me through my journey . The past few doctors have told me things like “You have to give yourself credit for working hard”.  I know it’s all God’s grace because I do what my body allows. I dont pretend to comprehend God’s sovereignty. It is not meant for our minds to comprehend. I don’t understand suffering and why some lose their battles, while others get renewed chances and yet others either struggle on that verge of a miracle their whole life. I’ve come to see each hurdle God gets me over as a miracle.  Each day feels like a miracle after reflecting on some of the critical complications. I feel so undeserving when I see how God has been so faithful to be carrying me and my children through stages. The past few visits with doctors seem to see things looking up and maybe they can help me get better control of the pain in time. 
Gretchen from Palliative Care came yesterday and I was a bit off I’m still trying to do what I can. Things are looking up.

Journal entry by Debby Larimer

When I get out of my home and reconnect, I feel so passionate about these re newed opportunities. This past weekend 2 friends drove so we all could get out together. We went to dinner and a movie (Lion King).  I managed. What a special treat! 
I am struggling with a great deal of pain when I am either sitting or laying flat. Today I have the biopsy and talk to specialist about the concerns that came up on the ultra at the end of June.  Like other auto immune rare diseases, Sarcoidosis, is one of those diseases that people do not see its path on the outside of the body, as it has its way throughout your body creating granulomas. If this is the case where they saw the mass, my treatment will continue, but they need to rule out other reasons as well. Im having pain, inflammation, body aches and great discomfort that interfere with daily life. I battle to breathe against the heat and cold, I continue to pray that God will give me relief and stamina. I lost so much time when I battled in the past. I had another test Monday.  I have to laugh because while I was going through the testing yesterday, I felt as though the staff, not intentionally, were seeing me in a different light. They were speaking loud and very slow. Sometimes people see someone in a wheelchair as deafer and dumber. My body may be slow but I’m still me. I desire to find new ways to relate to others. I am really grateful that I am managing. This week I have 3 appointments so these trips are exhausting.
As July comes to an end, I was reminded that I started reaching out through Caring-bridge in July of 2009. I never imagined that a year after I became a single mother that our lives would become impacted by my health.  I had many responsibilities with three children in elementary school and one in middle school and I was living in a area that travel was necessary and I couldn’t drive. I met new people along my journey and looking back I see how we adapted and how each step was guided by dependence on God to provide each next step. I would panic a lot, but then I would see how I wasted energy, I needed to fight, and God always was on time.
There is an abundance of grateful Glory to God .  Every detail over the years has people or places behind His plan. that have come along side us. God uses people or places to provide.  I may have no longer had “partner” but over the years my now grown children have never been alone or gone without.  I have not had to beg, plead or ask because God has always been a step ahead of me. We seem to have more than enough, cups overflowing. It’s not even material needs, it was people who allowed a child(ren) to spend the night while I was hospitalized, or listen to their hearts, or bring them to see me, or bigger projects like when we moved here and I was placed in a nursing home until I had a first floor bathroom and place to sleep.  I continue to ask God to use me, rise me up so I can do for others.
When I about to turn 40, I was still seemingly healthy. I was at a new church, Lifetree, in Jersey Shore, PA...Jennifer was just turning 15. I remember the sermon was about the new year and the verses that impacted me were Psalm 121; the whole chapter seemed to be a direction I needed to look to. I was an emotional mess and it felt like blind steps by step process. I had no idea as I stood there bewildered and full of so many emotions that in my attempts to surrender that life would get more challenging . I felt like God was calling me to surrender and abide. His help would be there when 6 months later I went into congestive heart failure and my lungs continued to fail.  I didn’t know how I would cling to Him and be in so many hospital situations.  God kept leading me up my mountain with my family and I realize more and more now that we all are climbing our own mountains until we reach Glory.  I fall or fail because I’m broken, we all are. I rise again because He woes me toward Him. When we are down from the battles, He can make us even stronger. I have made it and there has been a more stable, enjoyable road. I am embracing the presence and letting the future mystery to God. He is not done with me or any of His children. There is no one too broken that God can not restore. Whether your mountain seems unmovable, just keep climbing to God’s glory. 
Psalm 121.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.


Journal entry by Debby Larimer

I am so grateful for each and every person that takes time to encourage and or pray for this family. Getting to see my adult children flourish when with peers or at jobs is a confirmation that they are getting better equipped.  This weekend Jennifer soent Saturday helping and participating at the Ben Event. This foundation helps special needs students after they list their son. Jen ride in an antique car in parade of champions, She won a medal in a Special Olympics softball games and connected with friends.  Britt, a friend and Geoff went to a church picnic yesterday, followed by a worship concert.  Emily had a friend over last night and we all watched the movie Breakthrough and enjoyed each other’s company. They also had a friend stop by for a visit. I beam when I see them connecting in healthy ways,
I have been able to return to solid foods but the testing has really taken a toll on me.  I am glad that I am getting back into some of my routine.  My headache has been consistent. It does reduce in intensity but then flares back up. My nerve pain has been more intense since my steroids were reduced. Time will tell how it goes.  I get Costochondritis in my chest wall that creates pain closer to the surface with inflammation, tenderness and nerve irritation. I can’t discern how this brutal heat is affecting my lungs, head and pain. Combined with the migraine like headaches I am trying to control the pain with a newer medication that I haven’t got the dose quite right. I am trying Lidoderm patches and ICE. Ice has always been what brings some relief. Chris is my POA so she wrote to the Neurology department to see if I can get the prescription processed for the new Emgality which was prescribed for preventative care in June. We find sometimes in healthcare that they respond better to another person when not responding to me.  We all need God, our Helper but to trust someone with skin.i we encounter issues getting help. I have also seen how God intervenes as my true adovocate at just the right times by opening and closing doors. John 14:16..”I will ask the Father, and He will give you another Helper, that He may be with you forever;”
Today I had an experience that brought so much LIGHT into my life, light into my understanding with my adult children, light into things my heart and mind have struggled to put together. It was one of those times I could identify with Esther moments, Joseph moments, Noah moments, David moments. No I’m not a saying I’m a Bible character or a song writer, but we all get glimpses of stories in new ways. God’s story, only His glory.. As I was thinking about my children and ways to connect, I feel like God’s Spirit undenialable shows you truth about something that you connect to. God has been breaking me more and more, but in that broken, spent, crushed, identifying with suffering, comes a peaceful renewal, understanding of how you rise up for His GLORY.  He is so worthy, He is! the only way, the only truth, and only LIFE.  My weakness is sometimes seen as something to be feared or to be wrestled with.  Yet I know God is healing within and despite the unknown. God has been using my journey to teach to my heart. My children and I were talking about the word give this weekend....John 3:16” For God so LOVED the world that HE GAVE.. “He teaches us to forgive because He forGIVES. He wants anyone who chooses to FOLLOW Him to GIVE graciously. 
 I want to “follow” others on social media or get more followers, or make new and more friends in cyberspace and deep down we want this in real life, but God wants us to follow HIM to SEE His L❣️VE in action. I feel like I’m learning slowly on my journey how to GIVE what I can, to pour whatever I receive back up to Him.  How Lord, do I receive so much from you, yet I want so much ability be used to give back with others. I BELIEVE I still have a purpose.  I just saw the word LIE in the word believe.  There is an enemy with talons that presses down hard to seep lies in instead of the simple truths in faith.. I think It takes so much more energy to walk away from God then to stay in step with Him. I know I get caught in the struggle. I see my adult children struggle too with impulse control and struggle to avoid ungodly things.  Please continue to pray with me for my adult children. I see changes but there are still so many ways I still feel concerned. I want love with the Holy Spirit directing. I have been trying, yet failing as I strive to stay step in step with Jesus,  When setting my mind to do this, I may fail again because my heart. He can use every bit of our story for His Glory.  Because of suffering, we all face,  and then my Immobility and my facing immorality, I have a unique view of that reality that as Chrustians we are moving toward glory.. I desire it, but not because I am tired or too weak, but because I AM STRONGER within.. I see the personal miracle happening in my life.  It is the transformation of God helping me ...helping my children and directing them toward being whole, more independence. The thought occurred to me that my children need to feel raised with the acknowledgment that He is their single Father. “For there is one God, and one mediator also between God and men, the man Christ Jesus,” I Tim 2:5
Here on earth I may not be able to have the strength, I once had. I struggle because I can’t serve or GIVE in ways that I might have had opportunity in the past,  He can show me the love He wants me to give in other ways, I do see how there has been progress this year so I am embracing this with much gratitude. God has been good to me in weakness and strength. ”in my weakness, He is strong” Phil 4:13
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.” 2 Corinthians 12:9 And then again in verse 10 says, “For the sake of Christ, then, I am content with weaknesses” God offers the power to endure weakness in love. Preaching and teaching in my 💜 heart. God’s grace lets me know, I am still very capable in weakness and my strengths.  God’s truths give the strength to live and endure. As a follower of Christ I can thrive in the midst of any weaknesses.
2 Corinthians 4 and 5 has brought me back to it often. God is a sovereign and gracious God and He has not abandoned and he reminds me that he will never leave me or forsake any of us. He just asks that we trust and to walk or step by faith and not by sight. He wants us to look forward to the day of giving Him glory in GLORY.. Teach my heart what is truth.
2 Corinthians 4 -5 CEV
4:16-18 We never give up. Our bodies are gradually dying, but we ourselves are being made stronger each day. 17 These little troubles are getting us ready for an eternal glory that will make all our troubles seem like nothing. 18 Things that are seen don’t last forever, but things that are not seen are eternal. That’s why we keep our minds on the things that cannot be seen

5:1-10 Our bodies are like tents that we live in here on earth. But when these tents are destroyed, we know that God will give each of us a place to live. These homes will not be buildings that someone has made, but they are in heaven and will last forever. While we are here on earth, we sigh because we want to live in that heavenly home. We want to put it on like clothes and not be naked.

These tents we now live in are like a heavy burden, and we groan. But we don’t do this just because we want to leave these bodies that will die. It is because we want to change them for bodies that will never die. God is the one who makes all of this possible. He has given us his Spirit to make us certain that he will do it. So always be cheerful!

As long as we are in these bodies, we are away from the Lord. But we live by faith, not by what we see. We should be cheerful, because we would rather leave these bodies and be at home with the Lord. But whether we are at home with the Lord or away from him, we still try our best to please him. 10 After all, Christ will judge each of us for the good or the bad that we do while living in these bodies.”

Journal entry by Debby Larimer

Yesterday I went to my scheduled procedures and they were able to proceed with the one procedure but the other one, let’s just say, I have a slow moving colon because it needs to be rescheduled using a new prep in a month or so.  I was pretty discouraged because my severe headache persisted and still today, my slow acting system is engaged and either from the prep or persistent migraine or heat and low fluids I am struggling to still keep even fluids down.   I am resting and icing my head.  The one part that may be a help, is knowing I can take my regular medications and sip and do ice chips.  I’ve had the accompanying nausea (but not as severe as the night before) and difficulty with trying to drink more than sips because it sets things off with more discomfort etc.  The spasms are horrible because It really makes my head hurt and my bladder spasm putting pressure on the areas that need attention later this month for the endometrial concerns. This m I believe creates more nausea. I had hoped I would wake up feeling relief but actually some aspects have been more challenging. The good part is that I am in my own home, and I won’t worry about the retesting until I am faced with it. They did get some lower biopsies that looked ok.  They will try a longer strategy off solid food and a different preparation,  It’s true that I will know what I am getting myself into but I will know some strategies to maybe cope better, YET not thinking about that right now.  Because I already have had a hospital stays, and outpatient testing two days and a catheter change on top of this delayed reaction, it sort of feels like that snowball effect where it gets complicated as it rolls along. I’m not feeling like anything more than pushing to stay cool and one step at a time.
The other procedure was successful. My esophagus is corrected and they discovered some things with my stomach and swallowing concerns that my GI office can help me sort out, but I don’t remember the details because of the foggy anesthesia. I am sore from this procedure, but the other issues are taking up a bit more of my acute attention,  
They gave me good IV fluids so ice chips and sips will help me recover and rest because I was again needing to have an additional day with doing some transfers from up and down but it will get better soon ( I hope) and I’ll table or put the future concerns aside for now and get some rest.
This is not the typical outcome but I know that others with health concerns or muscle diseases do face this so not alone  I had this same test quite a few years ago, but things are different for me now.  I just wish it would resolve sooner than later and My doctors get what info that’s needed for coping in the future.
Again good to be home and glad I can follow up with those that pray and care.  We live in a world where we will face trials and pain with suffering.  Even Jesus sweat tears and suffered in unimaginable ways as his life came to an end in this world of being broken open for GLORY..  This world is full of brokenness, hardships and I need to take heart when our humanness wants to QUIT, because He has overcome the world.
John 16:34
“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”
I’m adding this later to my post

Just minutes ago, I got news that a very dear friend, a believer, lost her fight to Sarcoidosis. We just exchanged words days ago and now she is gone. It is so sad for me.  I know others who have gone on, but this was a closer friend.  I want prayer for her children, family and grandchild.  The sting of death is so hard, yet I know she is no longer suffering.  It odd, yet I think normal to recognize the timeline I have been given, yet all of us have to just appreciate the day and life we are given.  I love you LeeAnn.  Someday I will see you again. Sad to say goodbye, but someday with all Gods glory, we will never have to say goodbye. 

Journal entry by Debby Larimer

I was really pleased to come home and try to sort through things. Both the GI doctor and family doctor came up with a plan.  They reassured  that the Hemaglobin tells them I am not losing blood from somewhere more critical. I still continue to bleed but hopefully there will be some conclusions as this month continues.  It may be a combination of the small mass on the endometrial area or the change in steroids. They will know more when resting conclude. My pcp increased the steroids for a few week to perhaps help some of the inflammation. They will keep an eye of the kidney stones they discovered and the cyst(s) My pcp doctor told me at hospital despite these concerns it really could just be sarcoidosis flaring up. 
This morning I woke up with clear oddities that I kept praying would resolve. I kept blaming them on the heat but I couldn’t think, process information and my speech was a bit slurred.  I had more neurological and increased sensitivity.  The nurse needed to change the bladder tube in my abdomen yesterday.  We really think the increased intensity in my lower abdomen may not be concerns with my kidneys or the bladder itself but the areas below the bladder.  Therefore the change of this catheter has felt unbearable in past 6-7 months and because there are so many nerves in bladder and around there, I have ALOT of discomfort and spasms throughout. I said this because I really believed this morning it was from the pain or heat or just odd sensations.  I was struggling to put thoughts together and a severe migraine.  It doesn’t help that I couldn’t eat all day after my breakfast because I will be in procedures  tomorrow. I’m already weakened and out of sorts.  I had an upcoming appointment this morning and testing today with my lungs so I wanted to be able to communicate well and get there.  It has been a much harder day.
Today I had pulmonary testing and following up appointment , I met with my critical care pulmonologist after testing. The last time I saw him, I had hopes I could decrease my O2 from 3 liters to 2 liters but it has been so painful to take breathes. He said he isn’t going to change anything so I will continue the treatments. A different daily inhaler is prescribed so I’ll see. He is actually more concerned about the muscles and nervous system as a whole, rather than just my lungs. I came up 15%. He was pleased with changes in weight and agrees the success with getting off or decreasing a couple of my medications is helping. Even the fact I now talk with my hands is a change that shows increased mobility with my expressiveness, I believe that was stifled by the medication I came off. I never realized how much these meds that are suppose to help can work against progress. My bipap will stay the same and helps me with breathing for me while I sleep or need coverage. He wants to do another sleep study but we can wait for that. Im glad!  He actually complimented me on how hard I work and was pleased with the direction of my PT and how weight was a big factor.  While on hospice 4 years ago, I went from a small frame of a lower weight to a max of well over 200 lbs. Most of it was fluid from CHF, Cushings and adrenal insufficiency. The field of medicine is a delicate balance, not just with my disease and symptoms, but all auto immune illnesses or all medical conditions and related treatments.  I can only hope that in 6 months I am able to stabilize or improve. I am on little pain meds because of how past pain meds affected my ability to think and function. I’m discouraged about how much pain I am in and the energy it takes to hide or stifle it from those in front of me or around me.  hile in hospital they spoke of another spinal tap and when Im struggling with these clear inconsistencies with not just my brain, but with new sensations in my body. Neuro sarcoidosis can create or add to current flare up because they found it in my spinal fluid. This is not the first day like this, but I was hoping it would be getting better overtime because I’ve had some more positive resolution in past, especially in my endocrine system as seen on recent tests. I am very confused and I struggle with pain that and core suppression that I want to quit fighting but God has sustained me, maintained me and I’m regaining more abundant life.
Tomorrow I will have two procedures that need to be done at the hospital because Im on oxygen and have lung and heart care etc. They scheduled it to be done under anesthesia and because they can do more than one procedure and testing on same day,  I met with a team while in hospital and they asked if I felt up to the prep outside hospital for the colonoscopy type test tomorrow to see why I’m bleeding.  Well the majority of prep is tonight and in the morning. I had no problem with the drinking part at 6pm, it’s the middle of the night throwing up and of course the cleansing of your belly and bowel that has me very uncomfortable and maybe expected but with accompanying other symptoms, I’m not doing well. I also can’t get rid of migraine and no more medicines tonight. I am no way near as confused as I was in the early day so I guess that is grace. but my body is very fatigued.  I know the nausea and not keeping down is not the best for tomorrow. I just want to complete tonight and the horrible bladder spasms and other things calm down.  I’m not looking forward to the morning cocktail I need to drink. I want my nausea medication or migraine med but my attendant tonight feels I shouldn’t put anything in stomach as per instructions.
My kids get affected by these things and I continue to reassure them, “All is well” (and myself) but all these changes in routine and tests, odd symptoms, visits to the hospital concern them.  I am uttering those “well” words, yet clearly not myself.  This morning Jenn really wanted me to speak more clearly and finish thoughts but I struggled to reassure her, while trying myself to convince myself, it would get better.  I’m grateful I can write better tonight and think clearer. I’m writing this during bouts of bathroom sickness.  Emily had a fever yesterday and although my children are grown, I still want so much to care and comfort them, rather than sending a sibling up. I want to focus on their emotional, medical and social lives. I’ve done more if that in these past few months and TRULY want more and more if these good things. Geoff tried to go back to a karate class but the cost turned out to be a bigger expense than he realized so we look up routines online. He earned a few belts as a youth. Sometimes I have looked at my kids with great concern, yet WITHOUT God they msy not have overcome or learned what they have. With God the impossible becomes possible....mistakes become miracles and life is worth living. Being with and working with kids that God grows within becomes the prize..
Thanks for trying to follow my thoughts.  They get jumbled in there and my release is writing and so life gets edited, and thoughts about life and the complexities of medicine get waded through with you.  Thanks so much for listening.
Lamentations 3:22 “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning, great is your faithfulness.”

Journal entry by Debby Larimer

 I am never alone because even when in hospital, others are never far from my thoughts or prayers.  Even though we walk different paths through life we share that common thread that Life is hard and even in  day to day struggles, people take time to check up on me and I them. Social media for me has been part of my lifeline at times. Even when I struggle to put words to my journey, I read others.  I may share tmi and if I do, just pass over it or glance. Writing for me has always been a therapeutic way of sorting through my thoughts and experiences. I do it also when I’m scared or looking for answers, so thank you for whatever connections I have with you. 
One thing I don’t really get accustomed to is waking up in different surroundings (hospital rooms) Like yesterday I remember much of the timeline, other times I wake up in a room and realize I was not just sleeping but unconscious for a few days.  That’s not the case with this admission, but I was very confused initially during the night each time I woke up.  Well getting a ‘shot in the dark’ doesn’t help. If you’ve been in any type of hospital, you know what that is like. Yet we get wiser for it. I went through stages of loss and fought back with tears and frustration in the beginning of my illness  when symptoms started. I remember when I lived in Central Pa, I had a Christian doctor who I would say with indignation, “I’m in the hospital AGAIN! “ He replied further into my treatment, “you now have a lung disease start preparing your mind for when you might be in the hospital, rather than WHY is this happening again”  Intually I wasted days with tears and frustration over things that got resolved with the strengthening of my healing or I used up the only energy I had on futile feelings. Energy or strength does not come easy with auto immune illnesses so conservation is very crucial. Moreso now if I cry or get frustrated it is not only painful but it sapps all the energy needed to fight. It might sometimes feel good to express myself strongly but it fires up the fight or flight physical response and that is not good.  It doesn’t get easier.  Now I hope now I can find that there can be acceptance of something so life changing and look back on our days with a growing peace + joy and see how my decisions or choices to use that energy inappropriately can affect my wellbeing, my children’s lives and my future.  When I’m DEsaturating with oxygen or my my disease  Deconditions my body or the tight band around my chest squeezes so tight and I can’t get air or relief,  I learn to absolutely surrender to this process and learn about surrendering not to the disease but to God..  Do I choose to get bitter, or work on how to get inwardly better and hope rather than just cope.
So far today, I met with a GI doctor who tried to explain his part.  I saw the medicine team and had further testing. I’m on a floor where I’m hooked up to telemetry  
Please hear me, see inside me, figure out a plan”....I want treatment that will help and not hurt me. They have findings but it doesn’t seem to connect. I think it’s from tapering steroids and they deny it.
My doctor told me to come in yesterday, but they are not much closer to a plan.  I’m not even sure sometimes if they are not just testing or treating things blindly. I haven’t walked in any of your shoes, but I’ve been able “to spot things I got” among your posts. I have a lot going on in the core of my body and restriction.
I appreciate the team of doctors and their time but I wonder if they care about what is different for me or that I am here in this hospital or how many times I have been to a hospital in the past 13 yrs. I thought this past year was getting better but in the past few months I have been here too much. I do better seeing the doctors I’m familiar with at my appointments rather than talking in circles to people who struggle to connect the dots, yet they send me here. This is where I take the deepest breathe, I can, and put my faith in God and not just people.  
They added more pulmonary testing and trying to see what the mass is that is causing this peculiar bleeding. 
i’m suppose to have a 2 procedures on same day next week and then a biopsy and see lung doctor for testing. My blood test does not indicate that I need anything different.  Nothing stands on bloodwork yet but the out patient testing will tell more about the problems I came in with.  The reason for admission is for my lungs and weight loss. There was even talk about a spinal tap and I AM not doing this again because my spine has hard calcification and even tilting me upside down in radiology they get very little fluid, then I’m left with spinal HAs, blood patches and terrible pain....On numerous occasions they tell me they didn’t get enough or it was inconclusive so they want to try over and over . The day they wanted to do a spinal biopsy.  I said if I expire, and put Sarcoidosis and auto immune soup you can then or in a dire situation because there is no cure for Sarcoidosis or course of treatment for some.   I’m just  in a big flare up and have things that the doctors I work with can monitor outpatient.
Well thanks for listening and taking away the feeling of being alone., I’m not on an island of my own especially. There are far greater illness of issues. Now I can “try” to encourage others like I have been encouraged and Ahhha moments.  Thanks . I ❤️ you all👈. I hope to be coming home soon.

Journal entry by Debby Larimer

After seeing a few doctors, they decided to admit me. The good news is that the test to check for the blood loss from my GI tract was negative. Most likely this issue is being caused by the what will be biopsied. I didn’t have a clot or ❤️ attack. 
During my ct scan I discovered areas of 
They admitted so they can watch. Because I have increased inflammation in my chest, rib cage and the treatments were not opening the tightness of my chest, they are keeping me until Rheumatology check tests.  They spoke about a spinal tap.  I’m going to sway them away from this if not absolutely necessary because I’ve had serious issues resulting from these and they have a difficult time getting through the calcification build up on my spinal cord.  I won’t sweat about it because it’s not happening now.Time will tell. 
I’m waiting on respiratory therapy. I’m hooked up to bipap and cardiac. I am so exhausted and having a hard time getting air. I think I still have tests bect week but don’t know.  I just have some tests and they put me.p
Very tired and pain significant.  I
Thank you for your prayers,. 

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 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.

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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