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Journal entry by Debby Larimer

Did you ever hear the saying 2 steps forward 3 steps back?  This has felt like a theme for me and I have focused on all the steps back.  I see a positive slant to this now.

Tonight my Physical Therapist said that she will put services on hold for  three weeks while I meet with my doctors and make the adjustments to treatment.  we can then evaluate resuming if there is a possibilty for progress.  I have not had enough healing or strength to progress enough in the last month to push any further right now.  She said that a goal that we will work forward is when I am able to stand I can take 1 step forward and 1 back and then after a while of doing this I can progress to 2 steps forward and 2 back...then 3 and 3.
This makes me think of how the above saying can take on a new meaning.  Even if I only get to standing longer and then 1 forward and 1 back I will be able to transfer better. 
I see any strength I can gain as a win-win situation.  Pray I can make and take steps that will propell me into a future of possibilities....AND not not look back at the losses------>>>> only forward to where I am going. 

My realtor down in A-town said that "God wants us to drive looking out the windshield not focusing so much on the rear-view mirrors"

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Journal entry by Debby Larimer

I called the doctor this morning and he wanted me to come in to be checked out and reevaluate if the antibiotics were right.  I had a lot of ear pain in both ears so it was helpful to make sure I am taking the correct medicine to take care of any or all infections "on-board".  When I got home this morning I was able to visit with the children at the summer park program before going back into the house.  Jen, my oldest daughter was happy to see me out and we played UNO.  It was a day brightener.  I do feel STRONGER and hope to make some progress with the therapies coming in tonight and tomorrow.
My car has not been running since January and today it was towed to the service station to see if it can be fixed up to be back on the road so that my attendants or a friend could use it for appointments or outings and the children etc.  I am praying that this project will be successful.  AAA took it to the garage for me.  If it is not drivable I need to brainstorm with what to do with it.  My attorney has been unsuccessful in getting the title signed into my name.  This creates a problem because I can't give it away, sell it or "junk it" while it is in two names.  I do not have any contact information for my ex-husband since he committed a crime against the children and I.
Thanks for praying for me and for encouraging me.  I really appreciate the feedback I have received. 
I will be traveling to Hershey again next Wednesday, July 29 to meet with the doctor that treats the Myositis, Sarcoidosis and Vasculitis (all auto-immune) and inflammation through out my body.  I hope that we can make good decisions about where to go with treatment.

Please pray for
the right timing for selling the home
restful nights
infection-free lungs
best treatment plan and discernment for doctors

Praise
Daily provisions
Ability to stay HOME!!!
help in the home and transportation needs met
LIFE unfolding
Support and love

I read this yesterday....

God's sovereignty in our lives is like a plate that was prepared for us before birth, which holds perfectly measured amounts of joy and sorrow, of happiness and pain, and of struggle and rest---Lana Bateman

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Journal entry by Debby Larimer

I am trying not to see this most recent infection as a setback, but I am weary and discouraged.  I am much more symptomatic when I am sick.  Yesterday the nurse, occupational and physical therapist were here and I want to utilize this time to get stronger but it is very hard when I am not feeling well.  Sometimes I think that I am getting ahead and being extra careful to avoid infection and it seems I inevitably "catch one". 

When I am on the immunosuppressants it turns down my immune system so that my muscles, organs,tissue are not under attack, but when I get an infection I have to stop those meds so that my immune system can fight the infection.  Instead of my immune system protecting me.....it launches an attack against my body at a cellular level.  With the type of disease process that I have my body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune response. 
In my case I have had profound loss of strength and wasting of muscles.  Polymyositis is a condition which affects many muscles (poly = many), mainly the larger muscles of the body. Because mine has been resistant to treatment it has caused significant declines in my strength and mobility  Time will tell what the future holds.  It may take much longer periods of time on the treatment plan of oral and infusion medications to see if I can progress.  Treatment  has been VERY hard because of repeated infections and the heart, respiratory and swallowing problems.  My lungs were the first part of my body that was affected two years ago.  After going through that first congestive heart failure it was discovered that the alveoli cannot stay open in my lungs, so atelectasis occurs. When this happens, the lung cannot pass oxygen to the blood.  I have had many labels to what has been happening in my lungs and I have had frequent complications but the bottom line is that I have to work with what happens day by day currently.

I feel very overwhelmed with how I am going to keep up; how I am going to be a mom and keep the home running; how I will navigate the storms .  I find that I am worrying a lot more then I would like to or should.  It really impacts my nights when I am wrestling with health issues as well as trying to problem solve. This morning I felt as though the impact of everything was weighing heavily on me.  I am going to try not to think about the future and TRUST.

Today a friend and neighbor surprised us with some homemade food and I got needs taken care of with the friendly support of an attendant.  I am thankful for the bright spots in the day and trying not to have the difficulties foreshadow the good.


As I am writing this I just got a phonecall from the Hershey endocrinologist and the doctor told me that the ultra-sound showed that the area around the thyroid was "unremarkable" which was translated to mean that there are no immediate concerns.  There are some small cysts and the doctor said are entirely fluid filled so they are at a much lower risk of harboring cancer and they can be monitored by ultra-sound every 6 months or so to make sure they do not become solid.  I am greatful for this and to rest in the fact that no further surgeries are necessary at this time.


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Journal entry by Debby Larimer


I made it to and from Hershey Medical Center. The doctor should have the test results next week.  I am exhausted and hoping that rest will come. 

I started with a respiratory infection and the on call doctor stopped the Cellcept (Immunosuppressant) and called in an antibiotic. I am hoping I can fight it off.

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Journal entry by Debby Larimer

I am so perplexed at times when I have such sudden declines that have no direct connection.  Today my hands are very much affected and typing is a task right now.  I felt blessed with some sleep last night but awakened very weak this morning.  The left side of my body which is the non dominant side seems to become more affected when the weakness is more profound.  The heaviness through out my body makes every move so much more difficult and I am working so much harder at doing what I have to do to get some motion.  I never know how long these flare ups will last or where things are headed.  I have to just wait and see.  I feel that I have been very stable for the past three weeks and I am thankful.  The occupational therapist came and was very helpful.  She did something called myofascial to my arms, hands and neck and this helped to stimulate things within the muscles.

The heat makes breathing more labored but I am taking precautions and thankful that I am staying out of distress.

Tomorrow I am going to Hershey for the followup thyroid cancer testing and I am not feeling as concerned about the testing and hoping for a good report.  I have begun to not like to see "hospitals" and seeing them gives me a sinking feeling.  I am hoping that I have strength for the trip and that there is no evidence of cancer or suspious growths or nodules!

Please pray for strength within this weakness and the courage to want to keep up the day to day fight.

Thanks for letting me share my story here.  It helps me to know that it is ok to share and that others care enough to listen and read on.

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Journal entry by Debby Larimer

I am so moved by the comments and messages of support I get.  You do not know how much it means to be CONNECTED to people.  I feel very encouraged and feel that I can still have relationships with people that want to care and share this journey with me.  It helps us to get to know one another well.   

This day started out with the hope of a good day but the course it took was more concerning.  I started with a fever later this afternoon and I am weak"er".  I am not noticing a sign of infections so I am still with hope.  My muscles are more fatigued and my neck muscles are weak making my endurance being up more difficult.

I came across this verse that I never noted before today.  It is in Job 2:10b.  It says "Should we accept only the good things from the hand of God and never anything bad?" (New Living Translation) It gives me a broader perspective beyond trying to find personal comfort and helps me to see that even though God is able to rescue us from suffering that He also allows it.  I can accept it and grow with it or keep wrestling with all the whys?  I also need to look away from the bad I see coming out of diseases and look at the good that has come because of it.
One blessing I have received is the ways people have helped me at the most vulnerable and difficult times.  I have learned to trust people and receive from others in ways I was too scared or proud to expereince before all of this.  

I am hoping to get some rest and praying that my health is restored to a managable level for tomorrow   

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Journal entry by Debby Larimer

I can no longer live in a larger home with high maintanence and more than one story.  We were making it work (praise God) but it is getting more and more difficult.  When I was hospitalized throughout the month of May and then again in June the decision was made to TRY to move.  The house has been on the market for almost a month and there has been no showings or activity so I am discouraged today.  Many have validated my need to move and have offered their help in getting us ready.  We have packed boxes and I have made many phonecalls to prepare for the needs that this family will have in the area we are planning our move but we need to sell first.  The other discouraging and concerning matter is finding a home that will meet the needs that we have.  The realtor in the new area said finding a home for me will be like looking for a diamond.   I need to be able to get a wheelchair in and out of the house and rooms, 3 bedrooms, one level, and all within a price range that a single/non-working mother can afford.  A few have showed up that would have possibly worked but they sold.  I am believing that if moving is in the center of God's will then it will happen at the right time.  I SAY this but I am still very worried about how, when and if I can manage to actually do this...with the condition or things.

I have successfully been treated for one month with the new auto-immune drug.  This is a victory and hopefully it can reach it's therapuetic level.  I will be having some labs done tomorrow to make sure the meds. are not creating any unwanted side effects.
I will be continuing my therapies today and will see the nurse tomorrow.  I am scheduled to get further evaluated for mobility needs.  The appointment last friday was one step closer.

I am taking one breath at a time and managing.  I still need to be able to sleep at night.

I will be going to Hershey Medical Center on friday for testing to follow-up the thyroid cancer that I have been monitored and treated for since last August.  My surgery was in Sept 08' and they will check to make sure that there is no activity in the glands or area.  These trips are very difficult for me because it takes 2 1/2 to 3 hours each way.  I travel in a medical transport and I am able to take an attendant with me.  If we move to where it is planned, I will only be an hour or so away and this will make it easier.  I have another trip to Hershey on July 29, Aug 11 and more after that so I would appreciate your prayers for the tests and treatment I will be receiving.

THANK you for standing by me.

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Journal entry by Debby Larimer

The last few days I have been trying to think of what to journal as far as progress, changes or healing and sometimes it does not come in the ways that I expect.  Like everyone, there are the ups and downs in a day.  It just seems that sometimes things dramatically change.  I am managing to maintain at the level I am at and that is a plus.  I am tolerating the treatment plan and doing what I can each day to look for new ways to do activities of daily living.  
In the past, I expected a gradual incline of progress but now I am able to accept that there may always be the peaks among the valleys.  I am trying to utilize the good periods and prepare for the poor periods.
I had a longer period of sleep friday night and then last night I struggled through such tightness and pain with my breathing and did not sleep until the birds were chirping.  The new humid weather may be a factor in the increased shortness of breath.  I am still working with Hershey to make adjustments on how to address it all.   Sometimes I have to accept that there is not always a way to relieve the distress.  I struggle with the intensity of it all and often hope that something will make it all go away or improve.
I had a nice day yesterday when friends visited from Allentown and we celebrated two birthdays.  Laughter is a good medicine and there were happy times.  I have had other visitors this week that turned my heart toward joy.
We have had no showings to sell this home and I am not sure what will happen, but time will tell and I keep asking God to keep us in the center of His will.  Hudson Taylor, a well known missionary, said "God's work done in God's way, never lacks God's supply"  I am thankful that God has been very faithful everyday in the keeping and caring of the children and I.

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Journal entry by Debby Larimer

The nurse was here today and she could hear that my breath sounds and air flow is diminished in my lungs.  She called the doctor and will see what the pulmonologist wants to do.  Bloodwork was also ordered by the rheumatologist and the nurse can do that here in the home on her next visit.  I will wait and see what happens and I am just hoping my lungs will recover.  I have had a lot of difficulty with my lungs and the changes can take place very rapidly.  When my lung function was last evaluated I had 50% capacity.  That is like functioning on one lung.  I use 3 liters of oxygen and my saturations are staying up but I still have to work very hard to breathe.  My lung status has been an ongoing concern.  Changes, infection, collapse, enfusions etc can crop up and I am screeching away from my home and children.

There are many variables with muscle control and movement and sometimes it feels as though there is a breakdown in communication with the muscles and I have to wait it out until I can make the next move.  I am in a difficult spot today perhaps because of overuse yesterday or activity at a cellular level.  The therapist came and she did some range of motion.  I had an increase in activity yesterday and I never know how that will affect things.  I have to TRY to challenge things or else I feel I will not be working in an upward manner.  I feel I am always fighting resistance....in other words I want to go up but something keeps pushing me down.  The therpists are explaining energy conservation.  How to use it and save it.  The balance is difficult to discern.  When to rest, wait and move.

I am more emotional when limitations are there because I never know what to expect.  The randomness of illness can really get me down.  I am very tired, very tired and it is not the kind of fatigue that allows me to sleep.. It takes a lot of work to rest.  I have been trying to get a period of sleep at night but i have not had good success on my own.  I can not use certain medications for sleep because they can further suppress my breathing.

I hope that I will begin to feel stronger today.  In certain situations I am powerless over this disease and I have to find ways to work with it.  I do not want this disease to define me.

Please pray that my lung status can improve
pray that the right connections will be made with the right doctors and at the right time
pray that we can find a the right housing and that this can happen while I am stable
pray that sleep will come easier

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Journal entry by Debby Larimer

Highlight today was using the powerchair to go outside with Brittany and Emily.  I felt happy during this time with them :)

I saw my family doctor today and he has been there for our whole family throughout this process. The steroids are causing my blood sugar to go up and I have needed coverage when this happens.  I am hoping that this will level out.  Steroids are not good when you are on them for a long time.  We also discussed heart related concerns.
The transfer in and out of the car is made easier by this transfer board that is like a "portable sliding board" that helps me get from point A to poing B with more ease.  
My occupational therapist will also be bringing someone from Susquehanna Mobility this friday to "fit" me for better support so when I am up my head and the trunk of my body will have better support.
So right at this moment, instead of feeling discouraged about what I cannot do I am thankful for "sliding" and "gliding" (in powerchair) 
People are helping me find avenues to explore greater independance.  I need to utilize these tools to hope to live out the day to it's fullest.   



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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.

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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

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

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