Journal

Journal entry by Debby Larimer

Bear with me 🐻 as I try to explain some things I am learning in this process.
One of my daughters and I were talking about a hard topic. She was distraught and desperately trying to see her concerns and situatipn in a way where she wasn’t running the opposite way from facing her thoughts, feelings and many questions.  I asked her to be bold and brave and just ask her question to God while she was crying and in emotional pain. She told me it hurt too much. I asked her if she could ask God the questioning thoughts running through her mind rather out loud. She nodded and I saw her tears get stronger and I asked her to try to bring Jesus, His Spirit, into her situation going through her mind. I sensed she was questioning or seeing a situation(s) in her minds eye. She uttered a bold question and I started to think how to try to FIX it. I can talk a good talk, but I knew I was being instructed within to hush and let her work through a layer. I prayed and asked God to enter into her question to comfort her, counsel her, and answer her with help in the right timing. I hoped for her heart and spirit that her Heavenly Father could help ease the burden and sting of the pain in her thoughts.. She was quiet for a moment and wiped her puffy face and began to lift her head. A longer pause and a few breatheless laughs and like parents wait for  the priveledge to witness...she went from sitting to standing and pushing on shoulders with both hands. She said in her unique way, “I felt this way”, pushing intently on my shoulders.....then quickly releasing and lifting her hands high, she replied, “Now I feel this way!” I could see relief. I was .’picking up what she was putting down’ She later returned and we were talking about something lighter and she calmly and in a comforting  way told me. “Mom, it’s like that verse that says, ‘See I’m doing a new thing’ “ then she asked Alexa to find the verse and we audibly listened to it. 
Isaiah 43:19
See, I am doing a new thing!  Now it springs up; do you not perceive it?
I am making a way in the wilderness and streams in the wasteland.“
I felt in my Spirit that I witnessed a mini miracles in both of our lives. I witnessed not just a release of pent up emotion, but I saw a part of her relinquish control over trying to work this out by pushing the questions deeper, but I saw her let go of what she could, then God gave her the insight to press ‘onward and UPward’. 
In my mind later some things dominoed together for me.  I have loved that Isaiah verse and found it healing in my own ways and others verses I have thought deeply about but my experiences feelings have not always grasped came together. Thoughts flooded my mind as to how these things made more sense. These are a few of the verses....
Proverbs 3:5-6 “Trust in the Lord with all your heart  and lean not on your own understanding; in all your ways acknowledge * (absolutely submit) to him and he will make your paths straight.”  Or direct your paths.    * my emphasis and understanding
Isaiah 45:2_3 “This is what the Lord says: “I will go before you, Cyrus, and * *level the mountains. I will smash down gates of bronze and cut through bars of iron. And I will give you treasures hidden in the darkness— secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name.” ....
 Other versions of the Bible use the words *God will go before you and make the rough places, exalted places or crooked road straight....He will open the doors before us, so that the gates will not be shut. 

I Corinthians 10:13 “No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

Micah 5:4-5a (the storyline or context verses 2-5) “He will stand and shepherd his flock in the strength of the Lord, in the majesty of the name of the Lord his God. And they will live securely, for then his greatness will reach to the ends of the earth. And he will be our peace.”
I share this because I have had verses like these stumbling around in my head. I learn by my experiential moments in life, but more importantly, I learn when I’m lead to filter in God’s truth and living word in my circumstances.  I might highlight the things that emphasize that God is strengthening and straightening out my path but until the Spirit brings truth and collides my faith with a growing, wrestled with, knowledge....I don’t get it.  I may name and claim averse but until I grasp it (with God’s help) it may not make sense. This has been my experience and this has been something that has taken YEARS sometimes to GET it, as I clung and claimed I believed it.  Sometimes it has been painful, ohhhhh it stung, to look at it or face it and I have tried to stop the unanswered questions from stinging more because I did not know how to answer it for myself, my children, my friends etc so I compartmentalize it and ran in my my (and actions) the opposite direction from Gods clarifying truth, Then when I asked the questions, asked God to face the sting, and change my ways or direction He taught me what repentance was really about. For Christians, it’s turning the other way, reversing directions in your minds eye and then actions begin to become attitude. It’s not to condemn ourselves and God makes it clear that He doesn’t either. there is He does not condemn us (Romans 8)
I’m preaching to my own heart. When I was a teacher, in order to teach something I had to understand it, try to conceptualize it, or use my experiential knowledge so what I was teaching made sense to me or I struggle to come along side a student. I now can not multitask or carry out things unless I rehearse my next step or task. My body functions much differently. My body has changed but my mind is being renewed.  I think this can be a misconception in society that disabled, chronically ill or those with long standing diseases or those that need adaptive devices in society can no longer grow, prosper or live fulfilling lives until they are healed physically. I believe miracle happen but when complete physical or even mental healing does not come about that their is a flaw. I claim and believe in healing, I read, watch video about it but I feel that miracles are sometimes an inward action too. We are all on a path, with plans and decisions but there isn’t a definition that says that health or limitations or obstacles in society make us less. It just means we can accept our limitations. We all have them
 Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” 
He proved again and again how faithful and true He is.. Sometimes fear bullies me into wanting to feel like I want to take back control of my thoughts, broken ways of coping, and my life and the road I want to take.. What may be used as comfort can become like an idol when God has a and consumption my way of life, let the crooked consequences of life deepen my hunger for you.
On Wednesday, I had an appointment at Penn State Hershey Medical Center.  It was a struggle within to return to a place I spent time in for more specialized care for about 7 years here before transferring my care to a local hospital when I was placed on hospice. I was filled with so many mixed emotions about returning and traveling but I knew it was a direction I felt directed and i was hopeful for a new perspective. A friend and her daughter and my newest care worker loaded up. We broke up the trip and arrived in good time. I enjoyed the conversations in the car and time out but I was already feeling wornout. The medical center looked like it expanded and doubled in size.  The extra time the driver planned was wise because parking and getting to the right office took time. I needed to take extra supplies, medical records, wheel chair,  three extra oxygen tanks, and tools to assist with transfers etc. we were glad we had back up items because the tool to open and close the 02 tanks broke when we arrived so it’s good to carry spare items.
I was meeting at a new urolology surgeons office. The only information I received was that he specializes in neurogenic bladder. I wasn’t even sure of the name. The referral was made and I had disc and paperwork records with me last week. Even the records needed a separate floor to get them situated. The disc the local hospital prepared would not upload.  It didn't seem to matter because when I got situated in this doctor’s office,  In fact all the paperwork I filled out was not looked at by the doctor. He came in and explained the way he would like to start fresh and gather the information from me. He led the appointment by asking questions and taking notes. He did a neuro check and listened to lungs, heart etc and examined my pelvic area.  After this, he shared HOPE that I may have some better options or trials after testing is completed. He also explained why he believed some of the treatments and procedures in the past couple years may have failed to improve or help. My local dr tried to help by bringing me into hospital to attempt to paralyze my bladder a few times but it did not bring relief.  Because the problems and  pain are not coming from the spasming but from the complications of neurogenic bladder and my nervous system? His new advise gave me new confident feelings. I have a test scheduled for March that will give the doctor some necessary information. One hopeful discussion I can make with this appointment is to replace my SP permanent catheter with other options..  
Pray please for Jennifer. She is struggling with pain and her oral surgeon appt is at the end of February because her oral surgeon being sick in Jan.  Her new dentist has reassured her that they are available to assist her over the phone and they won’t treat with antibiotics if she does not have a fever or swelling. Hopefully the pain will not continue. She is taking medication according to the doctors instructions.
Thanks for listening to me sort out my thoughts.  Thanks for praying for my family members and for being part of the twists and turns of this journey called life.
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Journal entry by Debby Larimer

I want to thank everyone for the birthday greeting this past week and for the gift your friendship and support is to me!
had a week that I do not desire to repeat, yet to tell you my story helps me see I do overcome.  On Thursday evening while my friend Chris was over, I had an unusual health scare. The balloon that holds the catheter in my pelvic area deflated and I didn’t know it until I recognized a steady flow of blood draining. This had never happened. I got into my bathroom and tried to hold pressure on this but it continued to fill up the things I placed up against it and flowed into the water of the toilet. Chris phoned the on-call nursing and also a trusted friend who is also a nurse and is familiar with my care.  When the on-call called back she told me that she would call the ambulance because she was about 40 mins away and due to the bleeding she knew I needed to be seen. It was like nothing I have seen in my life, the amount was alarming. Then three, yes 3, police officer were in my bathroom with me until the ambulance crew came. Boy is that humbling. Chris knew that my evening care giver would be arriving soon. Emily volunteered to ride in the ambulance with me and she was there until Chris and Paula arrived.
Two doctors attended to me and were both concerned with getting the catheter back in as soon as possible. I was dealing with alarming pain and my “shock” over this ordeal..  When the doctors went to try to reinsert the catheter, they felt that a lot of time had passed and the opening had begun to try to close. I tried to remain calm as they began to try to examine the situation. I had swelled up granulomas that often form around the SPcatheter. They told me that they were trying to locate the exact area. Then a pop was felt and the severe pain reared up and I couldn’t stop the loud shrills of extreme pain I let out until they got it in place. I never knew it could get any worse. This rattled my brain. I was fighting back tears as my tolerance for pain hit a new peak. I audibly pleaded to God to rescue me. I didn’t care what the nurse or doctors thought. I just needed relief and fast. I knew I was fighting a new battle and I was frightened to move anything more than my lips. They were able to give me medicine through my IV and they also gave me a shot of Toredol in the arm as an anti-inflammatory. It took awhile to settle the sheer agony I felt I was feeling.  Following this I began to spasm so bad that my bag filled with more blood and the sheet under me was all stained.  I’m sorry for these details, but it still brings back traumatic images.  I still try to push down or away the memory of the way I cried out so loud and couldn’t tolerate any more pain ...I just couldn’t stifle it.  The monitors were alarming as they worked to get things in place. I kept apologizing for my loud cries and trying to protect Emily from experientially.  She told me that she was OK and tried to focus on the game she was playing on my IPad and was listening to music.  I worry about my adult children as they witness the things that happen around them.  I worry too about the medical experiences they are going through.  I continue to ask God to heal their minds, hearts and bodies. I know He is able to Shepherd them and care for them and He is more than able to lead them. I see more and more growth in their lives. We all seem to be learning. “All is well” is a comforting phrase we use to reassure one another.  
The two doctors I worked with last Thursday night were sensitive to my state of affairs and further strongly recommended that I follow up at Hershey in hopes of discovering a possible cause or treatment for the newest symptoms and areas of concern.  My urology appointment is on February 5th at Penn state Hershey MC.. My PCP wrote to me that she ‘highly recommends’ workIng with Hershey. I am also scheduled and referred to see a Sarcoidosis specialist (rheumatologist) that I’m familiar with from when my care was at Hershey. The situation with this is that her schedule does not open until next Fall.  I am on a waiting/cancellation list and have an early Nov. date if nothing opens up. I have to trust that If I need care, God will provide solutions and help with the doctors who treat me now or guide me.  I know time and timing is in His hands and I rest in this.  As long as I seek to stay in His steps, I feel reassured that His care covers me and comforts me. I know He is a loving and just God despite my decisions . Often I‘m reassured that Gods spirit is ministering within my soul, so this is Peace, all is well...It can and will be well with my soul. 
Psalm 62:1-2 & 5“Truly my soul finds rest in God; my salvation comes from him. He is my rock and salvation. He is my fortress. I will not be shaken....vs.5...Yes my soul finds rest in him. My hope comes from him”
To be quite honest, I was very tired, very fatigued. There is a shift since before the holidays. I’m sure pain plays a part, but in general tasks I struggle to concentrate, get tired quickly and feel quite a bit of inflammation in my joints and changes.
The ER doctors were able to regulate my symptoms so things got to a point where I could return home the next morning. I felt concerned for Chris because she had to go to work shortly after she dropped me and my attendant off at my home.  The test to look for infection became contaminated so the following day a nurse followed up.  I rested a lot over the weekend.  I am very fatigued and frightened by this experience, but glad to be home.
he is my  anmy salvahe imy.
Some friends came on Saturday and we had my snow date b-day get together.  We had Duck donuts and tacos. My children have also been supportive and very helpful lately.  They truly are a blessing.  I continue to try to get the help they need here in the home and outside support to come along side them and as I try, with Gods help to prepare them for the growing responsibilities of adulthood, I can only trust God with their future and mine.
Reflecting on the hymn It is Well with my Soul there is quite a story to remind us of how important it is to rest, rely and remember God’s faithfulness even in the hard times. This hymn was written after traumatic events in Horatio Spafford's and his wife’s  life.  His toddler son died of Scarlet fever and then a bad fire ruined him financially (he had been a successful lawyer and had invested significantly in property in the area of Chicago that was extensively damaged by great fire). His further interest were affected because of poor economics. He then planned a vacation to travel to Europe with his family on the Ss Ville Du Havre. His plans changed to travel on the same ship so he sent the family ahead and he was delayed. While crossing the Atlantic Ocean, the ship sank after a collision. All four of Spafford's daughters perished. His wife Anna survived and sent him a telegram, "Saved alone …". Shortly afterwards, as Horatio traveled to meet his grieving wife, he was inspired to write the words that later became a well known hymn as his ship passed near where his loved daughters had died.
In light of the recent tragedy of Kobe Bryant I thought of the Spaffords, who were also close friends of D.L. Moody, the famous preacher.  
I pray for all the families affected by this tragedy with the well loved basketball player. Any lose hits home.
Sometimes our lives look or feel pretty hard, but with God we can say, “It is well with my soul.” Psalm 46 tells us that God is our refuge and strength and that He is present in our sorrows. Romans 8:28 says, “we know that in all things God works for the good of those who love him, who have been called according to his purpose.”  We don’t always see the big picture. But God is there for us in it all. He will be there for our families , even when we are not by our side.

Songs are powerful to me, as reminders and anchors for this Journey. Psalms are also a great place to go for support. Recently I’ve watched my adult children work through lessons that are emotionally painful for them and also for me, but God is teaching me to back off and direct them to find comfort in their own personal relationship to God and find their identity in Christ. I have many questions for God and it stirs up emotion but I have to pray it can move me and them to action and or changes

Do you have a song that helps you when you are feeling weak or vulnerable? Maybe a song that gives you hope or energy to move through your day. I also have music that helps restore my soul when sad. Some are ones I learned years ago or that I hear on the radio now. I use them to help gain greater strength for the journey.

Dear Lord, My heart hurts for the families and friends that are grieving. And I must admit that I grieve too. As we age, we even mourn our changing physical state. But I am thankful that even when my heart is heavy that the weight of your Glory fills me. Thank you also you for filling my heart and mind with songs. Your strength reminds me that you are with me. me I love you, Lord, in your name I pray Amen.

It is Well with My Soul
When peace like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul
It is well
With my soul
It is well, it is well with my soul
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul
My sin, oh, the bliss of this glorious thought
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, o my soul
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul



Journal entry by Debby Larimer

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

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

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

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

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



Journal entry by Debby Larimer

This past week has been very tough for me. After visiting the ER last weekend, I continued with fever from Mon until, just last night. I had a return visit to my PCP’s office where I saw a new doctor.  Getting to the dr was challenging because my pain has been at a point where it’s hard to withstand or work with, especially when I am sitting or moving.  It is sharp, nerve shooting like intense pain, cramping and very uncomfortable to ride in a car with stops, bumps and turns, not to mention transfers in and out of the car. The doctor listened and had a few suggestions. He showed me that my spleen is enlarged and some more mild renal failure. They are also keeping an eye on my liver etc. The hope is that whatever bacteria or virus (perhaps combination) may be increasing the inflammation with infection should respond more to the antibiotics. He added a prescribed new medication, to possibly  get the spasming and distension in my abdomen and pelvis to calm down. I also got an injection to help calm inflammation.  My fever goes up and down, terrible sweats and so shaky etc. I hope these more intense components will calm and resolve this infection.  
Thanks for your prayers. I have an appointment at Hershey early next month with a new Urologist in hope there may be more help or relief in sight.
 I am not tolerating much movement, bending to sit or trying to carry out goals that require or involve being out of bed. I can recline in my power wheelchair and bed exercises but much more than that has been put on hold because I can’t tolerate it. I got a shower and that felt good to complete but the pain and spasming were difficult. 
Myotonic MD causes daytime sleepiness and can affect parts of the respiratory system. Next week Geoff has his sleep test from Thursday to Friday. He then meets with the pulmonologist. I’ve had these tests done, but Geoff has had struggles with testing and or some physicians. Pray he can do well so if there are suggestions or solutions that these can be addressed or monitored. 
Brittany is attending meetings and pursuing getting her passport to go to Belize this up coming July for a week. Since she was young, we both agreed that God’s Holy Spirit works in and through her in ways that help others with faith. When missions was pursued in the past she didn’t feel quite ready. We haven’t spoken about the topic in awhile... Then she came home from work one day and told me that she felt was ready and wanted to go. So we found a group forming to plan a trip to Belize and she is carrying out her steps and enjoying it. 
Jennifer will start her extractions with the oral surgeon in about 2 weeks and they will also help with her new smile once the total # of teeth come out. We are not only grateful for the care provided but those that help with our family with transportation, support, and treat us with kindness. How can I adequately thank others for being available to help with what may seem big or small acts that contribute to our family’s strength and wellbeing. 
Colossians 3:12- 14 “Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. 
Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. 
 And over all these virtues put on love, which binds them all together in perfect unity.”

Journal entry by Debby Larimer

I shared a prayer a request for a loved one, that was weighing on my heart and mind. Prayer, your prayers and mine,  brought about answers. I witnessed the truth being brought into the light. Now the healing can begin. Thank you Lord for this step in the correct direction.  I marvel at how God shows up and restores someone through repentance (turning the other way). I’m praying that this difficult lesson will be used for new growth to sprout and lessons will be learned. Perhaps, We can grow stronger through this . It’s God’s love and mercy that leads each of us to repentance. He loves us no matter what we do, which leads us to love Him and live for Him better and stronger .... (See song below)
 Thank you, Father God for your forgiveness and being a God of 2nd chances, 3:4,5,6 ...70x7 Matt 18:20-22 .
Our lives and decisions yield natural consequences but God can take any sin we confess directly to Him and renew our mind and Spirit it.  Our spoken brokenness starts to become beautiful right in front of our eyes. Just hold fast to truth and his promises. Let shame dissolve and look ahead with careful consideration. Let the Lord lead completely through surrender and praise.

Today was a Jennifer’s birthday. We celebrated with some friends last night. Her siblings helped with a scavenger hunt to find her gifts. She had a few surprises from others as well. She turned 28. Am I old enough to have a child this age? I am.  I remember how this tiny little one year old dynamo made me a Mom. She had battled so much before coming home and she continued to fight. Her team of doctors at Hershey helped her beat the odds as we watched her rise from a very medically complicated place. She is brave, bold, tenacious and loving. As a toddler, she would wave her hands in the air to music. While in and out of admissions initially, she called the IVs and shots, “pricks”  One day around age 3 or so, we were celebrating Easter, and she pointed to a photo of Jesus on the cross and looked at the scars on His hands and feet, and showed me that He had “Pricks” and then kissed them. That seed of childlike faith gave me a glimpse of  a child’s understanding. She still has that wonder through her eyes. Being my first child, she taught me about loving selflessly at times and she still lends me  courage to never quit. She has known suffering but she seems to focus on the joy and discovery of life. Shehas fought every battle and come out stronger over these years.  She is a woman now who still has that seeking awe about life, with many questions and curious comments. She is bright and has a beautiful heartfelt way of making others grin. Those who knew this baby girl from the start or met her along the way, know that she has been part of many miracles moments. 
Shine, Jennifer Rebekah and continue to holdfast to Gods promises.
“Let us hold unswervingly to the hope we profess, for he who promised is faithful” Hebrews 10:23

Today I started with some fever chills, sweats from this infection. I am trying to rest  My body is fighting this intruder and I’m trying to work on getting my strength back. I was able to get some other relief with the medication prescribed. My pain is hard to tolerate and this night is hard. Im trying to listen to music or try to lay and ponder and drift. Fortunately I do not have to work, like so many others, so I try to not worry. Distraction, ice and heat seem to help me..
I love these lyrics
Your Kindness   song By Sam Philips

Waiting for angry words to sear my soul
Knowing I don't deserve another chance
Suddenly the kindest words I've ever heard
Come flooding from God's heart

It's your kindness that leads us
To repentance Oh Lord
Knowing that You love us
No matter what we do
Makes us want to love You too
It's your kindness that leads us
To repentance Oh Lord
Knowing that You love us
No matter what we do
Makes us want to love You too
No excuse no one to blame
No way to hide
The eyes of God have found my failures
Found my pain
He understands my weaknesses
And knows my shame
But His heart never leaves me.
It's your kindness that leads us
To repentance Oh Lord
Knowing

Romans 2:4  “Or do you think lightly of the riches of His kindness and tolerance and patience, not knowing that the kindness of God leads you to repentance?”

Matt 18:19=22 “Again I say to you, that if two of you agree on earth about anything that they may ask, it shall be done for them by My Father who is in heaven. For where two or three have gathered together in My name, I am there in their midst.

“Then Peter came and said to Him, “Lord, how often shall my brother sin against me and I forgive him? Up to seven times?”Jesus *said to him, “I do not say to you, up to seven times, but up to seventy times seven


“I acknowledged my sin to you, and I did not cover my iniquity; I said, “I will confess my transgressions to the Lord,” and you forgave the iniquity of my sin.” Psalm 32:5

Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working. “ James 5:16

 

Journal entry by Debby Larimer

For the past few days I had an an increase in spasms and more pain. I tried to lay low during the day, so I would be able to participate at our get together. I really enjoyed being up and I believe all had a nice time. I really struggled with the intensity of pain if I moved too much so I planted myself in a lication that worked and limit my movements as much as possible. I have additional hip discomfort and pain from stiffening during spasms. A bladder spasm feels almost like a “contraction” because your lower parts feels an enourmous amount of pressure and you bear down hard with pain and hope that you have space in between to recover.  I have quite a bit of nerve pain throughout my body and our bladders have a lot of nerves and when they get damaged or inflamed for whatever reason from illness there is more pain than usual. I have both nerve related problems in more than one location in this tight area which seems all encompassing when I’m sitting, bending or repositioning but it flares up more intensely and this is one of those times.  I really felt there was something off. My jaw hurt from bearing down. This pain is getting so much harder to hide 
Following the party I got dropped off with my attendant at the ER around 10:30pm.  To make a long story shorter, they found out pretty quick from the urine test and bloodwork that I had a UTI so they started antibiotics. They also did a CT scan of my abdomen and despite all the meds I take for my GI issues, high up there was an issue so they added some more acute meds and helped me manage my pain. 
Today is Jenns 28th birthday and I reassured them that I was going to get a once over and it hopefully a acute visit. I’m glad I went and they talked about admitting for pain management and to see how I responded to this antibiotic. Then as we discussed the effects of the pain meds and how that can affect anybody’s colon, and probably even moreso in my S l o w painful system that I was better off in comfort of home. I have the care at home to keep me a w a y from there etc.  If I have further signs of infection or fever or more issues, I’m aware they are there. So with 3 scripts in hand, I am flat and much more comfortable in my own bed. I feel the storm of pain but I hopeful that I can get this more manageable.
Thank you for praying for the needs of this family. It means so much that I can journal my way through and share our struggles together. 
Thank you, Lord for allowing this to be a round trip, for the doctor that worked WITH me and listened to me, thank you that I saw a friend who is also a nurse when I arrived, thank you that even with this disease process, I don’t understand neurogenic bladder nor do my care team, as well as well as YOU, my great physician, does. Lord keep me strong In you and set my mind on you and the hope. In your name, amen
Have a nice Sunday, and thanks for being my sounding board and allowing me to feel heard and never alone.
Continue to lift up my adult children in prayer, as you feel led. 
Joshua 1:5
No one will be able to stand against you as long as you live. For I will be with you as I was with Moses. I will not fail you or abandon you.” 
Joshua 1:9
“This is my command–be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go.” 

Journal entry by Debby Larimer

I posted part of this in the group Prayer for Debby, a group Chris started years ago. I hesitated to post something because right now I can not further explain, but I do strongly believe in the power of prayer. Please pray for truth to come out. Pray for a wounded heart and much needed direction. My heart is heavy about this situation but I know that nothing that happens is a shock to God. He helps in times of trouble. He heals and sets us free.
“The flesh and my heart may fail, but God is the strength of my heart forever” Psalm 73:26 
Thank you, Lord that you never condemn us, your love never fails. Please pray for this dear one to grow through this situation and the best resolution.  Thank you in advance for prayer. Being a parent, no matter what the age, can really concern you when you don’t have the answers or you don’t know what to do.
Another request for prayer, is that I’ve had an increase in pain that spikes and makes it very difficult to move. It is taking a lot out of me.  A nurse came to help me accessing things. It is terribly draining to tolerate, work with it or discover the source. I don’t want to get checked out when an Emerg Center would be no closer to knowing the source than those who work with me. I’m concerned about a poss infection (??) I can’t even guess.
I had a catheter change that I tolerated this week but then today the nerve pain, spasms and tenderness was terrible and it was not permitting me to sit up or even trying to get back in bed and it seemed to encompass so much more then just my pelvis. It is hurting in ways I didn’t know or experience. The nurse came and contacted the doctor but I haven’t heard back so I’ll try if need be. I am hoping it will subside or get better. I know this issue is a broken record over the past year, but I never believed it could get like this. I did get an initial appointment at Hershey to begin seeking help in this region. I saw my family doctor before Christmas. I even painted my doc a “Bob Ross” inspired to express my gratitude for her help. We had a 2 hour appt and her plan was to have a chat (she said pow-wow) with my specialists to see if there is a doctor or two they could consult with about who best to see to help manage the Sarcoidosis. I want to follow up on Monday. I’m having some struggles with new system that started Jan 1. I lost some of my connection but had hoped the new system would allow me to be part of the new with some choices. I was told that next month .in February I will hopefully get reconnected with a “network” of services that my doctors work with but then I will need to get my home service coordination changed around again. I really am so grateful for the care I have but a lot of change all at once is hard to navigate and it’s now run directly through the government rather than an agency that works with nursing homes and home care. The red tape and restraints in health care is really changing for everyone....big and small, working and disabled. I have seen in others as well as my family.  
I started a newer med that requires me to inject myself twice initially and then each 28 days. It may take time to build up but neurologists have had good results. I hope it will cut back my worst migraines. It’s a step toward doctors being able to try to prevent them. 
The good news is God is good and He has also orchestrated some answered prayers. We were feeling a bit defeated about Jenns need for oral care ASAP. It wasn’t insurance as much as it was have it done in the proper setting and able to work not only with her pacemaker but her airway and concerns about putting her completely under because her MD can create this. We were just  in Reading at an oral surgeon out of network that was not as successful as we had hoped. He referred us to Philly, Then right before Christmas (24) Jenn got an appt and a good friend accompanied her to the dental clinic in the LHV. Between them taking on the frontlines and me conferencing on speaker phone, we got Jenn assessed. They discussed at this appt that the day after Christmas she could come back to meet with an oral surgeon. It turns out that he has experience with Jenns form of MD and this doctor had access to the cardiologist notes etc and we have a plan SAFELY” in place. He explained to Jenn in a way that really reassured her and alleviated her stress.  
I feel thankful that I’ve had Occupational therapy and Physical therapy here in the home and some extra nursing visits since my last mini admission. I’m trying to retrace my tracks after having 2 falls, twisted ankles (yes both) from a fall and trying to get out of my shower area.  I especially gained insight from OT in how to communicate my pain and fatigue with a chart and to work toward some achievable daily goals to gain confidence and hopefully give me better quality. My family is a job that all mothers work for but this is where a lot of my energy goes in to. My therapies really have focused On helping me communicate my needs without shame...To do some more self motivated actions that will help me. Today I had all three...OT, PT and nurse and these other family members had things that kept the coming and going+some addition meetings in the home. I did not do much movement today but I made calls, and worked on some paperwork. Tonight I watched Narnia with my family and then another one that I enjoyed more. Distraction has been a tool that does help me tolerate pain better and contend with the rapid changes in a day or week with my health.
 I’m thankful that we were able to find someone New Year’s Day to come the following day to help with my toilet, which the wash machine was bubbling in my toilet and not flushing. He fixed it and I’m so glad to see my portapotty chair get put away. So many of the details of everyday for this family have  run smooth because of generous and loving people connecting or sharing their time, their ride or their sometimes just lending an ear for me chattering.
We are scheduled to have some friends over tomorrow and I have been looking forward to it. It is also Jenn’s birthday. I don’t want to change the plans but I’m going to see what I can tolerate. It’s almost 3am now and writing has helped distract. As long as my temperature and SaO2 stays where it’s suppose to be, I think the party will go on.
Praise God for people who can accommodate and come where you are for some fun. 
Thanks for praying and listening as I try to sort through .
Geoff will be having some testing, as well as an overnight sleep study. He needs a few teeth pulled as well. Pray these can be done in an ideal setting for best results.




Journal entry by Debby Larimer

Wow this month has been flying. It is hard to believe we are in the last few days of December and Christmas is here.  It has been a year of new memories. We have also had a busy few weeks that I look forward to, perhaps, sharing more about later, but for now, I just want to wish all of you a very Merry Christmas. As we anticipate, a fresh new year, I am testifying to a willing and ABLE Lord. Thank you, from my heart, for all of your unique and encouraging ways that spur each one of my family members and myself onward. I just had an accidental fall this week, but bounced back. Jennifer also had a Christmas Eve answer to prayer....After a consultation locally, a dental office will put her in contact tomorrow, with an oral surgeon that will hopefully be equipped to put together a plan for her next steps with extractions+ aftercare. I am grateful and so is Jenn... to see the hand of God working through people to show His love, His gift and His mercy.
At this chapter in my life, the best gifts are so often those answers, provisions and outcomes that I desire, yet maybe you, like me, might think, down deep, may not deserve.  It has taken me years, to realize actually, I really do not ‘deserve’ BUT in God’s mercy He GIVES, HE for-GIVES. Instead, He-SERVES what I, Debby, do not deserve such mercy and grace. In my case, God gave and He also watched as things in my life may have been taken away...This only for me to LEARN how to discern the TRUE message of why Jesus came to deliver His promise. We all are responsible for the mess of this world but God had has a MESSage that we all have needed to understand in our own unique ways,  That is why, for me, the more familiar story in Luke 2 (and the other gospels) brings me fresh, new meaning...,Luke 2: 11-12...”I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” .......——->
I need a Savior, I need and needed to recognize my sin/my mistakes...whether I recognized it as sin or not. Even when others sinned against me, I still needed a Savior! He came! 
God recognized my need, even before I knew I needed any help.  He still is there, just waiting to be asked. I may forget to ask because that is the nature of this world and my will + way.  I’m glad He is always steps ahead of me. There are answers I may not get until Heaven, but I’m glad He provide a way. ‘Mercy’s’ definition was told to me as “getting what I do not deserve”. I had this all twisted in mind and thoughts, I may not deserve...But even the standard dictionary’s definition says......”compassion or forgiveness shown toward someone whom it is within one's power to punish or harm.” The sIN IN this world with my decisions may harm us, not God.   God restores, refreshes, renews, as we repent (regret, remorse) and allow Him to reveal Himself in us and our future.
Even when I could not see some of this, he loved me just for trying to seek Him. I know that many of you understand, but if you, like me, are still seeking...Give Him your whole heart and look for those answers, truth, in your own walk through His life. He will meet us there. I just want to continue to praise him for giving me HOPE that was not always felt inside , but I hoped it was there. 
Ephesians 2:8-10 “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God—not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
Merry Christ mas.

My Christmas Card letter
❄️ “We are all like snowflakes, All different in our own beautiful way” ❄️ 
Dear Family and Friends,
     This Christmas there is much to celebrate. We have updates and some obstacles, but through it all God has been so faithful and true in our lives. Jennifer is almost 28. She developed problems with the conduction in her heart, with increased weakness, and pain in her muscles. She was diagnosed with Myotonic Muscular Dystrophy, yet continues to battle this bravely. Jennifer and her two younger bio siblings struggle with this disease as well. Jennifer had a pacemaker/defibrillator placed this past spring. It was a difficult recovery, but she has always been so resilient. She continues to work making homemade gourmet Dukes Delites dog biscuits and muffins with Love Ran Red Foundation. This past year, Jenn was at the Macungie Farmers Market every Thursday and is happy to be back bowling on Monday nights.
Britt, 25yo, is a cashier at Weis Markets. She enjoys knitting with a group named Purls. She assists with the children and youth at our church. She is a dedicated reader and writer.
Geoff, 24, began working at Weis recently. He helps with cart return and some indoor maintenance. He feels supported taking part  in men’s groups. Geoff’s MD affects his heart, his facial muscles, eyes and he has difficulties with hands.
Emily, 23, began working in the deli at Weis last December and now works mostly front end. She continues to inspire with her artwork and unique creations.This year, Emily has asked me to follow Bob Ross episodes with her, and it has peaked both of our interests in doing more art together.
Some other highlights from this year were participating in a Christmas program with Rejoicing Spirits, going to Knoebels and getting involved in more social activities throughout the community with friends. Our family enjoyed caring for kittens this past summer prior to finding homes for them, but the mama cat, Jewelz, joined our other cats in the family.
The whole family helped to do our Christmas cards and we are enjoying yearly traditions. I  am very blessed by the way these young, maturing adults continue to touch others lives with their unique personalities.We all continue to live together with some in home support.
My health has been more stable this year with some acute challenges, and less critical ones. I can therefore enjoy so much more. I have gained tools that help me manage better with my daily care needs. Our entire family has felt guided by God’s grace, power, protection, and provision each day. We really appreciate the people who are in our lives and your prayers encourage us to keep pressing on. As we reflect back of this year, we appreciate the laughter with friends and the loving support of those around us. We appreciate each one of you, near or far, because you each bring us joy in the journey. As we placed the ribbons on the cards, I’m reminded of how God works through us, and weaves us together like ribbons in life. In both big and small ways, He offers His presence, “Immanuel…God with us”(Matt 1:23). We are held together by the knowledge that we are never alone, even when the road seems long, uncertain or our road seems unsure, He is near.

We want to rejoice this Christmas with each of you. 
Thanking you for the love you show that is
 brought to life though the cradle of God’s presence.
This present is given to every believing heart
Merry Christmas, and a renewed New Year

Debby, Jennifer, Brittany, 
Geoffrey, and Emily Larimer

Journal entry by Debby Larimer

It has taken me time to update those who are prayer warriors or wonder what might be going on with this recent bump in the road.  I tend to write the way I have been talking....a lot. I have also had so much, it seems, on my home to do list. Phone calls, paperwork, some home visits for both me and my children and pursuing medical options for us all.
After two days in hospital I heard a doctor speak about rehab placement at one point to continue care. I knew where my baseline was and although I was struggling, I was making some progress following solid rest and the antibiotics. This is one of my greatest fears when I have a flare up or muscle weakness, that I will be in a place away from my life. I did not want this option. I spoke to the inpatient doctor and she called my PCP. We all felt home.  I have attendant coverage around the clock in the home.  I have a very special layout in the back of my home that friends and family from church  helped to facilitate me coming home from a nursing home 7 years ago. The attending doctor called my PCP that knows me the best. She agreed with the plan to send me home on oral antibiotics, add some nursing visits, OT, PT...I know that I’m doing more OT with my upper body then at the start of this year, but exercises and discipline with my legs has  been decreasing since last summer. Getting any amount of  therapies again in my home will help me get stronger and access what I need again. A health aide was recommended but those needs were addressed today and it was decided my attendants will  help me. Energy conservation paperwork was sent home to help those around me to understand how important it is to help me with some of the tasks like bending at the waist or overextending in my attempted activities.  It has helped educate me and I believe these suggestions will help my adult-children break down activities. It helps describe the reason why some of the simple menial tasks can be done by others and I do need help.  Even if I’m stubborn and want to control my life, I need reasonable expectations for myself and those that work with me.  I know it’s hard for people who are caretakers to come into a home and overtime, the lines get blurred. I say this because some of my overextending myself comes from ME and my wacky brain that wants so much to make it through. I want to communicate my needs but some of them are so personal and something I need down but I want to know that the person helping me is willing to help and takes some initiative to carry out the basic help I need. It’s hard because sometimes I feel a push to just attempt to do it and I end up falling back or tipping over and I hurt or over extend myself and unfortunately my body is affected.  Whether it be shortness of breathe, a momentary feeling of distress or a more concerning lengthy time of distress life on Tuesday.  I always sense that I’m in a mode of trying to see how l o n g I can stay afloat before I notice distress My observation is grateful  signals that do not allow me to stay healthy. 
I don’t want to be in rehab or a nursing home.  I want to stay home but also not go back and forth to hospitals and rehabs like I did following my initial diagnosis because I would overdo or push beyond true limitations. 
I want people to know my brain energy which can be very hyper and tangenting, revolving in many circles at the same time ....wants a new body that can keep up with the hopes and dreams in my mind.  
I love my kids to the moon and back but my brain can no longer manage all of their needs and mine.  like I want to. We all age but so often our children do as well so they can take on more responsibilities. Some of the developmental challenges my special adults have prevent them from taking on many of the adult responsibilities that would advance them in confident mature ways.
There are only 24 hrs in a day for all of us.  I have a revolving door each day of little or big fires to put out. Between Alexa and I, there are many reminders and directions for the kids.  My lungs work hard. I’m sure that is good exercise for my lungs but it is also using energy, strength and words I do not have. 
I want you to know the value I get writing or talking so I can organize my thoughts. I learn from what others say to me. I grow and it helps with gaining some needed peace inside. I feel heard and I want others to feel understood and valued for their really feelings as well. I see Gods hand intervening on this crazy but also exciting journey. I have gained Godly and God’s wisdom directly not all the good experiences, but I see tremendous insight from many of my years of pain, struggling and even suffering through traumas.  I now see God there in the experiences, whereas before there was darkness, searching and yearning for understanding. I found the most value over the years and maybe you have too, from inviting Him into current circumstances and inviting Him to be Lord over my past.  Trust me, if you met me 15 years ago, I was not at peace. I was not a woman of contentment and I knew God. I felt like I was always committed to living a life where I was working hard on “serving” God. I worked in avenues of ministry for what I considered a full life of thriving on opportunities to work with children, youth and women’s ministry. Like others I worked for pay in the day and on nights and weekends I was involved with what my kids were involved in, along with teaching within a church.  I did some speaking opportunities in front of large groups and I loved it.  My dysfunctional mind from unresolved past and troubling circumstances within my relationships.  I had no idea how to communicate effectively with those closest to me, yet I was out thriving on experiences or my full day planner schedule. I also did not sleep. I punished myself by thinking I didn’t need or deserve time to properly care for my body.  I took my body’s seemingly-bountiful energy all for granted.
To my kids, I thought I was going to shield them from feeling any of the feelings or experiences that I encountered as a child with experiences on my journey. Little did I know how near to their hearts they would be hurt or betrayed and I learned how being married to him would change over time to domestic abuse. For years we have had code words for the family member(dad/husband) who took himself out of our family. They asked to not have to connect him to society’s image  for the only father they related to and grew up to know and trust.  I somehow tried to take him out of pictures over the years literally. I cut him up or threw him away(literally in pictures) because I related a lot in black and white as good or bad. I couldn’t see the good after this shocking realization foreshadowed my ability to remember or see how I could have had a relationship for 16+ years. There was a time when the loss of his role would have been easier if it was a death in the family to mourn rather than all the ambivalence I felt. I saw him as the enemy rather than the enemy being the choices he made. I could not sort out because it was like a dark foreshadowing when we looked at our history with him. When there is not a repentant heart, it is hard to work past that. 
But God! Over the years has been working in my heart and my kids.
Tonight the two youngest ladies went to a winter formal and these two woman have worked very hard over the years toward recovery.  I love to see them shine and experience Joy. The word Joy is part of both of their middle names. One of them wrote the following letter and said I could share it here.  It shows the progress she has made because she has resisted at times to let go of the pain, anger and desire to keep the past as a larger part of her present.  It’s understandable that letting go of the intensity is very hard. Forgiveness or trying to let go of our past pain is not always the place people can go.  I know I struggled through my adult years with turning my history into victory. It did not resolve for me until much later in life. I’m so proud of this written piece because I see the healing emerging as this was written. I know God is well pleased, has come into the areas where she may have struggled. Im sure you understand how the steps we witness our family and friends make in the right direction, make us CHEER!  I want to share this piece of my daughters puzzle, because I’m proud (in a mom way) and all I desire for my adult children is to know they have Spiritual and emotional well being and that they can work through situations and live a peaceable and healthy adulthood. God is good! Here is her written letter sharing her life story with a friend.....She said I could have full bragging rights. Go Girl...What I see, is a young lady being transformed by the renewing of her mind... She has HOPE! 
“Dear =====,
First of all I want to tell you that God loves you. I also want to tell you what God has done for me in my life. First he kept me safe as a baby with my birth parents by letting me get adopted. He kept me going during school by having my mom be there for me. He was even there when I was hurt by my dad. Jesus kept me from getting hurt more and gave me the courage to tell my mom. He helps me now with giving me the strength to go to work and the health to keep going. God wants to help you with everything.
Your friend,”
=====
 “I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.” Romans 12:1-2 
“Then the righteous will shine like the sun in the kingdom of their Father” Matthew 13:43 
We can all shine, as we see God’s transformation or metamorphosis in our lives or in those we love and fight beside. God is so real, when He does so much more in someone we pray...
Lord, heal hearts and lives! God brings about fruit 🍎 of the Spirit with the transforming power of the Lord. Sometimes these miracle moments or truths ‘that transform’ are so valuable. 
Some prayer requests
Please pray for Jenn. She had a cat scan yesterday and bloodwork and it was OK, but she is struggling with dizziness, headaches and difficulties with simple tasks she didn’t struggle with before. She was given a few referrals with an ASAP but but today as we tried to follow up, 2 of the referrals are not honored. We will contact insurance for other alternatives. Pray for open doors. We do have some direction for Jenn's teeth at a location in Berks County. We will consult with them and see if this surgeon can help her.
Geoff got his medication because of a persistent and successful friend who accompanied him to a appointment and told the office she was not going to leave until he had the needed care. He got the prescription and was put on a waiting list to see a doctor sooner than later. This friend helped Geoff get cared for with meds until then. This meant so much to him.  Pray for the choices he is making with his job. He has called in almost weekly, if not more to say he is not coming in and struggles to work with those trying to help him.  He has important decisions to make to do what is right when his impulses tell him to do otherwise. He has been on emergency status for a number of years to have some added support services but it is taking time. He has worked with someone who provides support but this is a grant service. They will no longer be willing to provide this to him. He just lost his familiar psychiatrist and now he will need to work hard to stay on task when this program concludes.
This weekend I would like to make it to church for the service and following we will get a family photo, then 3 of the 4 kids are in a special service with their Autism society at another church later in the afternoon.  I am praying that my body will co-operate with my desire to be present. Pray I also can balance what is too ambitious and how to reserve some energy so that I don’t overexert.
I started some PT today, had my SPCatheter changed, and I’m hopeful I will continue to see myself improve. I still am trying to get some of the medication I was discharged with but the pharmacy said they have been swamped. Fortunately I was given antibiotic pills on my discharge that tided me over one day. I’ve begun to look into getting some of my care at Hershey. They will work with my insurance but I want to be pray I find the right direction in finding the care, options, doctors opinions and or answers to help get the best care for my concerns, if in deed I can seek out this. I don’t want to repeat tests or need to travel too much. I am looking into options to see if I can travel with a service. 

I have gotten to know so many new people over the years in my personal life and on this site and FB. You have cheered me on with both good and difficult days. Even this past week I have really been reminded of the gift of these relationships. You have prayed, commented and even shared with me your experiences. I know there are those who perhaps understand better than I that life is tough. I know each persons story is full of experiences. I find more and more how much we are very much alike.  




 

Journal entry by Debby Larimer

I’m in hospital since earlier yesterday morning. My aide and I were very aware that something was very off.  Some more troubling symptoms came on while I tried to rest and she came back to check on me. She got my emegency call bell to summon help after trying what I knew to resolve any need to come here.  They are needing to keep me for now, but I slept well. I was struggling @ home recently with only pain and struggle to rest  (more due to very intense pain). I will need to be referred to either Hershey, Philly or Geisinger in Danville for the areas they feel they can not treat..more neuro and pelvic concerns. You know I have held out on this. But they explained, they treat and they I need to understand, they refer out when they feel it’s necessary.  I know it’s my option, but I feel like it’s hard to research (as they recommended places) it’s my job for me to find.  I do this as best as I can with and for my children but I feel stubborn and frightened and weary with seeking care further but it’s now something repeated again and again in recent months.
My intense tingling and loss of conscious symptoms, more profound weakness is being worked up but all is good in tests so far.  The only acute issue they are treating me for is iv antibiotics for uti but need future work up (culture, blood draws) to make sure best med.... I tell my kidos, “all is well”, but this is an adjustment even though it should be a short period for them, they still are reeling and struggling with day to day. Chris has been there checking but I keep reassuring them and challenging them to feel empowered and independent minded while I’m not that presence in the home... I also see how when my health complications pop up more or I need more medical care, it pops that bubble of feeling safe again.  For me I deal with the stress of this better because I know this routine, but it never gets easier when it’s another thing, they too can’t control, predict. I’ve had so much stability and positive experientially this year with some added strength. Yet it feels as though I’ve gone further back “today”.  I need more help with need for more assistance because I’m more weak and the weakness extends from face down...meaning my mouth, neck to shoulders down arms. I’m having breathing issues, extra treatments, new medicine (steroidal) and keeping bipap going, but no infection. I thought it was pain wearing me down or lack of sleep but they are controlling that decently. They tried to get me in the chair and my head is so heavy and feel like sandbags are on me. I have delayed sensitivity on my skin but internally very hyper sensitive. Iit’s much more difficult with sitting vertical. It’s so very discouraging after a year of strengthening especially my upper body. 💪 I keep trying to do baseline things and it is a challenge today. I was just told that they may not get exact details or instructions but there are a few things going on and they will do further testing but I didn’t have stroke of heart attack again etc. it may be those zebra things rather then the hooves they hear of the typical horse...yet they don’t always have the answers specifically..only the little known about treating systemic related Sarcoidosis. 
Please pray for solution (s) to get me home where I’m most comfy and to finish Holiday hopes and desires this year.  Love you all for supporting our family through this. I sure have a “His>story” of seeing God work in mysterious and faithful ways over the years of not being able to have more control. I’m learning and trying to grow one moment at a time. I am working hard most of the time and so are those who help me but it’s not easy for us. Thanks very much for the courage you instill that en-courages me to journey on.  My PT, OT gave me concrete materials to use energy conservation.  My mind is the part willing moreso now then ever but my body fails me.  I wish it would totally be mind over body or believing to overcome health obstacles but sometimes the known hurdles are easier to work with, then the things doctors can not address or fix and advise you on.  I will rest while I’m away from household responsibilities yet fight to get back home and regain doing more independent. I can be grateful for much, in hindsight of more serious known complications.😖😔😏🙃🙃🙃😍🥰🤪🤤🤪😱🙃🙃🤕😶my many moods right now) Lord, continue to be there despite circumstances.
I had a wonderful weekend btw so hopefully be better able to heal and cope sooner than later.

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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