Journal

Journal entry by Debby Larimer

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

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




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Journal entry by Debby Larimer

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

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

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

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

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



Journal entry by Debby Larimer

It seems like I’ve had a lot of tests. Some new tests for me. It’s very draining and physically a challenge. While looking for reasons for my symptoms, the doctor discovered that my spleen has become quite enlarged. My platelet counts are quite low as well as my white blood cells but the red count is high. They are having a Hematologist start with me tomorrow. The spleen is an area of the body that others with Sarcoidosis have encountered problems with.  I have an appointment at Hershey in November with a specialist as well.  There can be concern of rupture with the spleen so it’s good they caught it. 
The lung and heart concerns will be further explored tomorrow but the aorta vessel is ok and no clots. I was surprised to discover I’ve lost another 15 lbs and despite all I eat my Albumin continues to drop. a lot but weight loss may be a symptom. I started on a new medication. My liver has no serious concerns except the dr. noted mild renal disease. (I was told this in the past). I was moved from one room to a new floor.  I was in a 2nd room, then tonight I was transferred  into another room on same floor but other side of building. I hope they don’t lose me in here. My window can see helicopter EMT and  lights. I am so homesick when I FaceTime the kids and see my kitties. I miss my Bible study zoom friends. I miss my bed and my caregivers. I miss meal time, paint time, music, my backyard. I know I’ll be home soon. I know God will guide and provide and help put my feet firmly on so,I’d ground. 
I know that things will need to managed through my drs as outpatient. I’m trying to just pray for healing and deal with each thing as necessary. I have hope. I just want to get back home.  
My body is fighting because I am having night sweats, morning sweats and so on. They are giving me icepack, and cool cloths to try to cool me.  My pain goes from comfortable to intolerable.
I was most concerned about my lungs when I came in. The doctor says my lungs sound like Velcro and there are crackles and not a lot of air moving. I have uncomfortable restriction.  Somethings I can tell that there isn’t an easy solution. I don’t likeThey are trying to decide how to treat inflammation with neuro~Sarcoidosis. 
I have a terrible migraine right now, I think because I’m very tired. I just got to order food for first time and tonight I have nothing by mouth again because of heart testing in morning. 
I am trying to stay positive, grateful that I am stable and they are aware so I can pursue treatment and get home with my family.  I will strive, feel alive, but God ultimately get
In Psalm 42, the psalmist’s feels the struggle of the depth. God wins when He turns darkness into rejoicing. When suffering , sadness sorrow is the deepest, the Lord can make it flee away. , When we are in the deepest pits, we can offer God the deepest “Hallelujah” despite circumstances. 
Isaiah 51:11 Therefore the redeemed of the Lord shall return, and come with singing unto Zion; and everlasting joy shall be upon their head: they shall obtain gladness and joy; and sorrow and mourning shall flee away.” 

Lamentation 3:24 ‘The LORD is my portion,’ says my soul, ‘therefore I hope in Him!’”

Zephaniah 3:17 The LORD your God in your midst, the Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing.”

Journal entry by Debby Larimer

I had a decent night. The EKG,  blood work and vitals checks during the night was a bit of a challenge. The pain was well managed. I have been ‘nothing by mouth’ until I complete some additional testing. 
My  CV19 is negitive!
I have testing today to look at aorta. I will have a stress test if it can be scheduled and they are going to look at the liver and abdomen with ultrasound shortly.
Because air is not moving well, there is quite a bit of restriction in my chest. They are utilizing the bipap here. In the past they would have me bring my machine, but on this stay they wanted me to discuss my settings and with cv-19 there are changes with how they go about things. Restriction in my lungs and radiating pain is the primary concern, but this may be part of the conditions I’m already being treated for. This can be hard, because I am grateful that there is nothing new or acutely wrong, but it’s just another reminder that even when you hope you are improving, sometimes your body desires to take a step or so back. The same way you can improve, you can also be reminded of the limitations or potential for possible obstacles. I sure hope my breathing improves.
They just informed me that they are also not certain about the Stress test happening today due to Memorial Day. I’ll have to wait to hear from doctor. 

“It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deut 31:8

Journal entry by Debby Larimer

I’m at LVHN. I’ve been getting a battery of tests for pain that is giving me tightness in my chest and pain radiating into my upper back. 
In the past couple of days I began getting more tightness in my chest and and new pain in upper center of back accompanied by a bark like cough. I tried to rest and it seemed to ease up at times. Yet during the night and in the morning over weekend, I could not get it to ease up. It also increases with little activity.
 After speaking to my pulmonologist to see if he had a possible answer or help me narrow it down . He wanted me to come in to ER. I was hoping I could just stay home.
I have not had a fever or obvious congestion but they still tested me for CV19 but I’m not feeling those symptoms . The battery of tests in ER were to check for more routine causes or infection or cause.
 They decided because my bloodwork did have some changes in bld test markers to explore these, so I was admitted this afternoon. The air in my lungs  is not moving very well upon them listening. The doctors agree on that point. My abdomen on one side has also been tender and looks dissented to them. The one blood test showed increased inflammation and another level they are exploring my kidneys but these results could just be related to neuro-Sarcoidosis. Maybe a flare up, I hope. I’m getting respiratory therapy and I’m on a floor that works connected to heart monitor that allows them to observe. They do hourly checks.
Since I’ve been admitted, they have performed multiple ultra sounds in both legs, and abdomen looking for anything creating the chest pressure. They did a CT scan that ruled out any blood clots in my lungs and they’ll let me know about other areas. I’m on blood thinners and DVTs on legs. I was just told I’m to have more vascular work up.
I’m in the Kaysch bldg. 5th fl. I’m hopeful they can observe me or do tests out patient if nothing obvious pops up here tonight.
They will be doing another stress test tonight because there is some abnormality with heart testing but that might just be something that has been going on overtime. They mentioned about aorta. 
The ER dr told me women’s heart problems aren’t as easy to detect as men’s. 
My family at home seems ok. I just continue to tell them...All is Well!  I just spoke to them.
I appreciate the prayers for my family and my stay here. Praying that it will get better and I will be home soon. 
I never get used to a hospital visit so just going to continue to trust the Great Physician to either reveal so they can treat or heal .
I’m trying not to become anxious tonight.
Luke 1:37

“For nothing will be impossible with God.” 


  

Journal entry by Debby Larimer

If you follow me here, or even if you just began, you know parts of my story, my struggles, but you also can discover the healing growth that has come sometimes in both small and large ways. You may see how new circumstances can develop a fresh sense of renewal, and Hope. Through these times of journaling at different intersection of my journey, I see how truths begin to infuse and transform me inwardly, allowing me to conquer what lays before me today and prepare me for what may lay ahead. God has also taken the sting from past pain and replaced it. Those around me and online have been like messengers of truth at times. Hands and feet of faith extend love, for-giveness and relationship. I recognize that the level of transparency and the length of what I share is in some ways an ongoing work, It is the workings of the spiritual, the Holy Spirit. I have needed to understand it for myself, experientially. 
Writing has also helped me to examine my life.  This uncovering of “self” reveals a lot of things. As I grow I want to show or share my thoughts. 
I know there is much more in this life, and this has been a process of asking God for “abundantly more” (Ephesians 3:20).  None of us grow up instantly, and neither has my faith. In sickness and health there have been steps and changes that have enabled me to experience so much more of my life abundantly.  
  I’m still someone that lives with an illness that does not have a cure and it involves multiple systems and organs in my body. I have these conditions to manage, but they don’t hold me captive.. I do not despair about any condition a doctor may diagnosis me with. . I try to seize the day with the grace from God’s hand to my body and press on. I seek to know how God is working inwardly and wait on him.  
 I’ve had several online visits, and in home visits that have recently revealed that neuro-muscularly my lungs and heart are not functioning together properly. I currently have medicine or interventions that are used to maintain stability. I utilize it, to help or maintain my health.  God is the best physician, my ultimate strengther, comforter, my provider, my sanctifier, my supplier= (El Shaddai) and my Jehovah Rophe, My healer. Like in Exodus ,we see “Jehovah heals.” God alone provided the remedy for their brokenness. Then in the NT through His son, Jesus provide a way. The gospel story is the physical, moral, and spiritual healing. Our dis-ease is sin in this world... I needed to know how to break down the prefix dis and see how it’s used in our English language...like in.disobey, disability and how it was used in Bible times.  I also explored the differences in illness, disease and sickness in Bible times, past generations and now.
One thing I reflected on is how Jesus met sickness and affliction. It was met with unfailing sympathy, never with condemnation, 
  • Jesus meets us where we are. Joy comes like the morning. Hope is not lost, because after any dark night we find the dawn....after a cold winter, there is renewal in Spring. That’s much like Gods grace, we experience His love and the healing of scars. I remember a song that calls God, “a friend of a wounded heart.”
Recently an abnormality was seen on a past stress test done on my heart so I will need it repeated soon, as well as EMG, ultra-sound, breathing tests and MRI.  I’ve met online twice with the pulmonologist since March and my neurology appt was moved up and collectively some of my LVHN physicians are trying to work with getting me seen by doctors at Hershey sooner to decide if testing and treatment should be done there and what the next steps might be etc.  I’m not experiencing concern in this juncture because worry will not change anything.  Instead I’m trying to transfer my concern to the only source that I’ve learned to trust and depend upon. I run to Him.  He has my future in His hands. I call on Him to continue to sustain me and reverse any (if any) damage.  I pray that I’m guided toward avenues that can access God’s provision. I’m not discouraged because I’ve seen God multiply His resources in my life before and in those special areas of my children’s life.
I desired to share this because while out on a walk or st(roll), I was searching for answers to define my life as I come in contact with those around me. I have been learning that we are all much the same in many ways. Our life style does not define or make us any more worthy than a homeless person.  Acknowledging that God can use any part of our story for His glory encourages my heart. On this walk, while my family took off on a gravel road, I sat by the edge of the water in the park. I was content to sit there and soak up the beauty of the park on a sunny Spring day. I thought of my life and how I really have become richer in Spirit if not in lifestyle. I’m rich, even though. I am a single,  or differently abled as a mom. but 
Our family is rich in love as a unit and rich in love from others. We are each valued in God’s eyes. The way the world may define me is different than how God sees me. I thank God for giving me reasons to rejoice, to feel fully alive and in a fulfilling process. When a God looks at us he doesn’t judge us by our circumstances. He looks at the condition of all of us....our sin that He alone redeemed.  I asked God how he sees me. El Roi. Does he look at me and say, “Debby is incomplete, or does He take me in my circumstances and work within my heart. I felt like He renewed my inner posture of confidence like He did with Hagar and those in the line of David. The God of Hagar, Ruth, David and Mary were people who struggled and came through the desert of others trying to define them. God says to me, “I will refine you” He say to me even as I sit in my chair, that I can boldly approach Him because I am free. (Gal5:1) Because of the cross I am set free. In any capacity or circumstance, I can walk in freedom. My condition does not enslave me, sin does. God healed sin and death on the cross to provide a way to live and communicate in relationships with him. He hears me. If my confidence comes “only if” He answers my prayers or your prayers according to my desire, my want or longing then my mindset becomes “until God heals me” I am not free. I don’t know the how, when and where and in the timing. . Like a perfect parent He answers, by asking us to trust him with any answer..even if it’s yes, no or wait. I can’t stay stuck here and neither should others. A parent of a sick child waits expectantly but also carries on in that relationship. 
My relationship with him is now and then in eternity with Him is my hope that continues to move along with my growth with His Spirit.  I experience and believe that God can and will do more than I could hope or imagine...but I will praise Him right this moment.  My “forever self." My soul is what the Bible calls the inner being/self/man ."(Ephesians 3:16) That's where healing and wholeness happens. Our bodies are temporary. God looks at the heart condition. Man looks at the outward appearance but God the heart. (ISam 16:7) so even in death we win win. Last week In the park, I felt God saying....It is not what’s in your wallet, it’s not what you look like or how you carry on. If you can’t walk, then stroll. If you can’t control your bowel and bladder then seek help, but live live live. God’s original purpose in the garden was different then what the original sin caused. , i can only remain faithful because of what God did to rescue me and open up a way to experience renewal. "Create in me a clean heart, O God, and renew a steadfast spirit within me." Psalm 51:10. I love how The Message explains this. “God, make a fresh start in me” I can be used in this space, this moment and this body that my soul occupies, yet still boldly ask for “more”. I will continue to ask, seek and knock in this process, yet not give way to discouragement by the worlds condition or my physical body’s condition.
Recently I had the privilege of doing a two week study with Bible Study Fellowship. I was afforded this opportunity because of all the online studies church and ministries are offering.. I’m able to join in and engage more with my church and community. I hope and pray our communities can restart and thrive once again, but until they do, I can rest in knowing He is still in complete control. These conditions do not limit Him. Where It has temporily closed some doors, it has opened up doors to connect for others. Gleaning from these resources is ok.  Online services by choice allow me to engage without overexerting my supply. . God surely works things together for good even during our current events.
The 2 week study with BSF was on James. I learned a lot by examining this short but powerful book. When I return to any book, I pull out more truth.
James 5:17 reminds me that sin, my sin, was nailed to the cross, so I can overcome sin....”Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” Even though God’s healing work for my sins was done on the cross, I still learn and grow from my mistakes by going directly to God’s throne for the strength live in this world. I can also go to one of you, or within a group and receive healing by confession and accountability. When I shine a light on my mistakes (sins), I receive His grace each time.... 1 John 1:8-10
Check out James 4 :7-10 and also 5:7+ and see how our humility can lead us to peace. James 5:7 tells my heart to patiently wait on God, not just for my own life and passions, but for the prayers petitioned for others. But only God knows the circumstances of each of His children. Patience and endurance comes when He instructs my heart to wait on him. I sense this for our world right now in this epidemic and for my life. I can’t try to go ahead of God. I wait, But in the process, even if I can’t see it, He is at work. He instructs me to pray for my friends and loved ones to experience the healing of God in whatever way, or however He yields....like waiting for a valuable crop. With this grace, that flows over me again and again and again, I learn to invite healing to flow through for His glory. God does not heal because I am good. He healed my soul because of His grace, as we persevere, because He is good. It’s dependent on the person of Jesus Christ. He will do it.  I Thess5:24...God will make this happen, for he who calls you is faithful. He carries out this faithfulness each and every day by providing and guiding us.
My daughter wrote and posted a poem that beautifully plays out this section of scripture in her own words and way. She wrote it last night after God led her to a place of brokenness in her Spirit concerning her adopted father. She felt the feelings and invited in his healing over this pain. She acknowledged a part of her that still carries wounds and scars and these layers lead her in a step toward for-giveness. She admitted she can’t heal these areas without God’s help. I remembered how I learned to do this in areas of my own life.  A wise counselor years ago walked me through this. Now because of God grace, I was able to watch my dear daughter take such a redemptive step and it yielded this poem, or prayer. Some feelings make pain intolerable, but God transforms the pain into growth that heals the heart and the matter. As she understands He clears away any lies it reaps new growth.
written by Emily Larimer

Pain is intolerable
Suffering makes us miserable
But God saves our souls
From Satan's goals
And gives us his full armor
He is our farmer
For he reaps what he sows

Without her knowing she brought confirmation to my heart as I saw James 5:7 carried out. 

“Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains.”.......then today when I directed her to this verse, we both felt confirmed in our faith.  Without words she was glowing and so was my heart. Her mind is healing as her faith is growing. Isn’t this what the process of sanctification is all about? I ask myself this as my own mind and inner Spirit wanders in response to how the world may define me. I don’t have the control or change my circumstances, God does this.  God is working, loving me and you by enabling me to see my worth and significance in His eyes. I pray that I can love others right where they are and encourage them to press on.. when we operate In Spirit there are no boundaries within, even if they exist without (except sin). There are no categories, no judgement, no labels in Gods eye... just love, grace and a peace that comes when we understand something new and then surrender it or give it back to God....all at the foot of the cross. My victory, the way to overcome comes in acknowledging what He did so I can be ok in this skin. I can claim who I am in Christ. I added two pictures above from the Victory over the Darkness that has been instrumental in my life since I was in college.  It helps remind me of who I am, my significance.

My idea for my life was a lot different.  i had dreams and my own expectations 30 yrs ago. , He ultimately is the only one who sees the full picture and how it all interconnects. I am whole by wholly depending on His daily grace and mercy.  He has done the unraveling. Whether others hurt me is irrelevant because this is covered under the blood. Any shame, guilt, regret or sin is under the power of the cross.  I keep on going , seeking accepting the renewing  life and this newer creation or version of the continuing story. I won’t arrive until I see my Savior, my victor, my redeemer. .....“therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!”  today 2 Cor 5:17  ....“he was pierced for our transgressions, he was crushed for our iniquities (sins); the punishment that brought us peace was on him, and by his wounds we are healed” Isaiah 53:5 I feel  strengthened WITHIN therefore I am ready for any circumstance. I want the resurrection power of the cross and depend on this strength.

Forgive my redundancy but I’m learning more, and if it doesn’t stick for you, perhaps God is at work in all of us, in a His own unique way. I tell my children, not to just listen to me, but search the Bible for themselves.

We are learning new interests, hobbies and skills as we are able to spend these days together. We’ve had some nice experiences. Geoff and Britt will be meeting with their PCP to express their desire to return to work. Pray for the right timing of this. The complexity of these decisions will hopefully be resolved and they will have shoes of peace with the timing.

Pray for open doors for my young adults and I to grow and serve. 

You can pray for the right treatments for my care and for my children’s health concerns.

Some names of God below and the lyrics to a song from “my day” by Cindy Morgan called  Take My Life 

ELOHIM. My Creator.JEHOVAH. My Lord God.EL SHADDAI. My Supplier.ADONAI. My Master.JEHOVAH JIREH. My Provider.JEHOVAH ROPHE. My Healer.JEHOVAH NISSI. My Banner.
Take My Life
Who can say when life is over
The silver cord breaks and our breath returns to God
Will we walk through fields of clover
Or soar up high through valleys deep and wide
I can not know all that's waiting there
But until that day this is my prayer
Take my life
Take away all the shattered dreams in me
And give me love that will last forever
Take my life
Give me the love that makes me free
'Cause I believe that Your love can save even a wretch like me
This race is not just for the runners
Some of us walk while others barely crawl, hey
We make our way through spring and winter
Leaning on the strength that strengthens all, 
And when the sunlight fades to morning
You'll still be burning in my eyes
yes
Take my life
Take away all the shattered dreams in me
Give me the love that makes me free
'Cause I believe....

Journal entry by Debby Larimer








It took 80 years for my father to have a series of memories confirmed. He had a dearly loved grandfather, J Hartman, that he spent time with while his parents were away when he was a child. His grandfather would take him for walks to a share with him information about the area. There was a cemetery where my father’s grandfather would tell him stories about a girl in our family-line back in the 1700s, around 1755, that was captured and held against her will by Indians during the French and Indian war. There was no way to verify this story and the tombstones were difficult to read. He shared it with me while I was growing up. My mother and others were unsure if there was truth to this. Well last year, we subscribed to Ancestry after one of my children did a DNA test to discover their nationality. We found some clues for my daughter, but we decided to do our family’s tree from my parents. My father was an only child, and this history was passed down only to him. My father had some Native American items when I was little and I was always curious about this story. Well after searching for almost a year in the wrong areas, I spoke with my Dad and he revealed more details that I either never heard or did not remember. All I had to do was put in the right areas from his memories and the cemetery and the information exploded on the screen. First newspaper articles in Lebanon county, then differing sides of some details and finally we found 2 children’s books and a movie, just recently done, entitled Alone, Yet not Alone.


I can verify some names because it is part of our family tree. The basics of the story is that Regina Hartman/Leininger was approx.10yo when she came from Germany to America. She was home with her father, brother and younger sister. Their mother was not home at the time but returned to find her husband and sons killed, their humble home in ashes. The two girls were taken,Regina and her sister, Barbara were taken back to the Indian camp. No one knows exactly when her young sisters life was taken. One document says that there was scalping done, but her little sister’s body was never found. Another story says, she may have escaped. In the movie they portray her sister differently as well as the historical fiction of their captivity.


What did happen while captive, we now know that Regina survived captivity for 9-10 yrs. She learned how to work and craft Indian items. She was renamed Sawquehanna. 


When the peace settlement between England, France, and the frontier tribes and Britain flag was flown, the  Native Americans were willing to return all captives that had been abducted from their homes. The captives were brought more centrally in PA. Family members came from all over to try to reunite with their relatives. They stood lined up to seek reunion. Some of the returned captives had no family left, and preferred to return and live as Indians. Some found no family yet,


Colonel Henry Bouquet, brought all the remaining captives back east. They searched eastern Pennsylvania for families that might recognize captives. 


Mrs Hartman, Regina's mother, heard from a German pastor at Tulpehocken, Rev Muhlenberg, that perhaps Regina would be found. This location is near where the cemetery is that my father spoke of.. Her mother was looking at every face, into every eye. It had been years. Perhaps her mother could not tell if her daughter was there. She may have told Colonel Bouquet. She tried to look carefully again. She tried to sing a beloved song from Germany that she hoped Regina would recognize


“Allein, und doch nicht ganz allein, Bin ich in meiner Einsamkeit." 




“Alone, yet not alone am I,


Though in this solitude so drear;


I feel my Saviour always nigh,


He comes the very hour to cheer;


I am with Him, and He with me,


E’en here alone I cannot be”




This German song was recognized by Regina and she was reunited with her mother and they decided in the Lebanon county Pennsylvania. This is where my father was raised.


It took me some time to share this story because I wanted to discover how her name is both document as Regina Hartmann and the last name a Leininger. Well it came when I discovered that my dad’s father was part of a large family of brothers and sisters. One sibling became Leininger through marriage and that is the bridge that brings our families together. Ironically I connected with another Debbie within this Leininger family and she has been researching with me. There is a memorial that was for “Regina, the Indian captive.” The marker, placed by the Berks County Chapter of the Daughters of the American Revolution in 1958, remembers Regina, who lies in a grave in the old cemetery that my father visited as a child. The memorial recognizes her by the two different names– Regina Leininger in life and Regina Hartman. . Regina’s story is one that weaves fact and historical stories passed down into an interesting story that has made it through the generations. Historians and folklorists have debated her identity over the years and while the majority agree Regina Hartman and Regina Leininger are one and the same, the story or memories link these two families together.


The confirmation of this story has brought me closer to my father. His retelling invites me into his childhood. I have a new understanding into what we can learn from our ancestry. What a blessing to pass this down from my parents and my brother to our children, We are sharing the information, books and I really look forward to watching the movie with my father. I watched the movies with my children and we are reading the books outloud together. The movie features a song sung by Joni Erickson Tada.


The songs, both the German hymn and the movie track, speaks to my heart this history enriches me in faith to see the faith in my ancestors a few hundred years ago It allows me to see that suffering, struggles and hard times are not new to this generation. Pain is pain regardless of how it happens. Yet God’s faithfulness and restorative power is the same yesterday, today and tomorrow. I also recently heard a friend from college speak in a bible study on the book of James. She said Faith is a verb that takes on action “it shows and it grows”.  I now see faith as living, breathing, seeking, searching and surviving. When I look back each day, I can’t take for granted that God sustained, provided and walked with me.  Many times we may feel alone and even Jesus expressed this in the garden prior to his struggle on the way to that one and only blood stained cross. We participate in ways that share in the passion of Christ’s suffering but we also share in the hope of the resurrection and His promised to come again. Jesus overcame and because of this he conquered our struggles as well as our sinful decisions and choices that affect our timeline.


I am learning so much during this time of isolation.  I’m stretching learning more patience, I’m learning about from the faith of others, I’m gaining time with my children to work on areas I couldn’t when my health limited me or I was away from them fighting for my life.  Similar to Regina, God has sustained me and given me more time. Due to the this current difficult crisis around the world, I’m also personally being encouraged because access to others has opened up. I was finally able to join Bible studies online, fellowship with others, find creative sparks in me and others to try new things, while still conserving my precious energy and working hard from home to have maintainability that safely manages my health, regardless of this crisis.  My energy is well spent and I’m able to rest, while still being a part of ministry.


My health before factored into many limitations and barriers to be part of fellowship. Like Covid19)s inflammatory process in the lungs, this is also the case with Sarcoidosis. This is similar except once Covid19 is treated, they can return to health or lifestyle. Sarcoidosis can continue to cripple organs, tissue and the immune system.  Your body is altered longstanding effects that may never get better. Both can lead to death.  But like in any illness of disease there is life more abundantly despite the prognosis. You can’t catch Sarcoidosis because it’s not viral or bacterial so it’s more rare and misunderstood.  You can get infections like pneumonia with both. I need ventilation through bipap and O2 to live. Plaquenil, ventilation and percussions are used with both conditions but it is used for the duration of Covid19, whereas it often used with a combination of other drugs and therapies for a lifetime of someone that suffers chronic inflammation, and when the immune system continues to attack itself. This month, April, was both Sarcoidosis awareness month and Autism....(last month was MD) both similarly misunderstood. Heck, I don’t understand it but it affects my family. It’s like Covid has become socially acceptable and research and medicine are being funded. Sarcoidosis, because rare has little funding. It creates granulomas (under a microscope they cluster like clumps of snow or snowflakes causing havoc) as well as inflammation and so if you hear some frustration it’s because in this month of awareness many more of those I’ve only met online have fallen due to covid pneumonia’s or just sarcoid itself. Through out the week I keep getting messages..’another snowflake has fallen’. It rips at my soul wrenching me with loss and concerns. I’ve seen this also with DM1muscular dystrophy that 3 out of my 4 children have.  DM1 is a more severe form, yet God is doing mini miracles all the time in their lives, even as they weaken, and muscles constrict.  I get a bit uptight sometimes, but I’ve been through some of the process for years that have washed away some of my fears because Im still here. Inwardly, I’m still standing and so will my children. I try my best to live each day as if it may be my last. All of our lives will end so live it up. We will all get sick or weak to some degree. This is just truth. But there is peace that can be found in any part of our journey. I try to pack in everyday simple memories and instill independence, wholeness and messages of hope, that all is well, despite the worlds or our own circumstances.


Each time I did get to church, or out for a holiday in the past, I put my health in the same sort of danger we are taking g precautions for now because of my weakened immune system, I was open to infection and need for other interventions for years.  I wanted to hug, shake hands, sit among others but it was like playing jeopardy. Now as we all battle together to stop the spread of a different type of intruder of infection, we are all on a more united front. I love the way relationships are being rekindled and people are reaching out and fighting on the frontlines in this “war”.


I have feelings of gratefulness and yet real concerns all at the same time.


I also have a peace that comes and consoles me during this storm. There was a song that says, “sometimes He calms the storm, and other times, He calms his child” Isn’t  that what we try to do with our own children, students, friends and loved ones? We want to console them in the storm....how much more does our Heavenly Father want to console us....how much stronger and more comforting is our God who says , “peace be still” in the middle of our storms, both big and small. 


I met with my neurologist via video visit recently and I am trying wrists braces to try to help with my painful hands and frozen fingers. I have growing neuropathy throughout my body, but it is more limiting and pain distracting in my face, hands and lower extremities. I also will have further testing when it’s safe to do so, for my struggles with labored breathing and limitations with muscle control. I continue to fight problems in my pelvic and severe GI and related pain. There is growing concern that tries to beat down, but I know if not now, my healing is coming. I try to harness what strength is available and claim my day to be the best it can be.


Like you all, our “normal” routines and lives are onhold but while we wait for the green like to go, we continue with the caution light of yellow. Nothing can stop a God from teaching us, molding us and stretching us and giving us new challenges that will grow us. It sure is not easy but someday you may be part of another’s story in how they have overcome.  I sure have a testimony if not what I’ve done, but what others have done to take part in my journey. If I could jump for joy every time someone blesses me I see that is how I’ve jumped over my hurdles, with enough leaps of joy down in my heart even when my feet, and body  may fail me. I’m treasuring, to the best on my ability the time I have and those key relationships I’ve met along my journey. Your faith and generous acts, even thoughts of others gives others the strength to carry on with their burdens.




Please understand that all these times that I write, I think I am often trying to believe for myself during times of stress, what my heart needs to hear.  I’m just as broken at times as the next person, but as I read, write and live as abundantly as my body and mind allow, God always helps me to win more battles, as He fights along side me.....Alone, yet never alone!


I’ll pray for you, and you can pray for me.




Matthew 6.... read this whole chapter but consider these few verses with me as we are all in this together


Do Not Worry


25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?


28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.




Alone Yet Not Alone (Song) Performed by Joni Eareckson Tada


Lyrics


I'm alone, yet not alone.


God's the light that will guide me home.


With His love and tenderness,


Leading through the wilderness,


And wherever I may roam,


I'm alone, yet not alone.


I will not be bent in fear.


He's the refuge I know is near.


In His strength I find my own.


By His faithful mercies shown.


That so mighty is His shield


All His love is now revealed.


When my steps are lost.


And desperate for a guide,


I can feel his touch,


A soothing presence by my side.


Alone, yet not alone.


Not forsaken when on my own.


I can lean upon His arm,


And be lifted up from harm.


If I stumble, or if I'm thrown,


I'm alone, yet not alone.


When my steps are lost.


And desperate for a guide,


I can feel his touch,


A soothing presence by my side


By my side!


He has bound me with His love,


Watchful angels look from above.


Every evil can be braved,


For I know I will be saved.


Never frightened on my own,


I'm alone, yet not alone.


I'm alone, yet not alone

Journal entry by Debby Larimer

This month with so much happening in the world I get this feeling that fear grips many minds. It’s as though leaving our home for any reason brings fear or anxiety about the unknown. I have not been out of the home for well over a month. I try to chase the fear away but I’m learning more that facing it, talking about it and understanding it better brings healing. These troubling times can be a time to learn to depend and trust.
Psalm 91:1,2 has a phrase I like to repeat....”He is my refuge and my fortress, my God, in whom I trust.” 
Does it always work? No but because of the past troubles, or personal battles, God is helping me to lean into Him. The “refuge” in this verse has been a place I can go to in my mind to hide so that fear, cannot access me as much. When I’m holding onto the Gentle Shepherd’s hand, fear cannot get a real hold on me. In Psalm 23:4 there is another place I can repeat in my mind to calm the fear. 
”Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me” I learned that the rod was more like a staff and tool that a shepherd guides and protects with. 
The darkest valley for me, used to be things I conjured up in my mind of what might happen to my children or I, but many of those thoughts were wasted because this Easter and every resurrection day, I’m reminded...”Debby, dear, there is an empty grave and His Spirit was sent to guide you with resurrection power; to provide HOPE to my fears. The cave, not a grave has sort of blended together in my mind to be a shelter, my refuge, my strength I can access. It’s like the Ark that Noah entered. If I would have been part of the family entering this Ark, I might have been unsure of this strange, unknown voyage, inside a huge wooden vessel headed into a storm for the length of time they spent together. They were even stuck in there after the pouring rain until a God told them they were safe. They may not have understood a God’s plan, but they trusted Him. We just had a beautiful rainbow that many I my area posted pictures of. This rainbow 🌈 originated for the first time as God’s symbol of His promise to provide.  
Over my “arky arky” 🪕years my thoughts have healed gradually. The ark has become a place of safety more and more. I remember discussing this with a friend that mentored and counseled me. Her faith and example set a lot of the groundwork for my ability to trust and depend on God, my father.  It’s like what is happening with this corona virus now. My children and I are tucked away in our home, our ark, our cave, a refuge and the winds may blow and come and go, but I sense Him fighting in the battle. I’m dealing with my challenge and trying to redirect my family as they learn to  step out on their own. Sometimes I get it correctly and sometimes in my own crookedly.  I can’t be afraid and rest in that nest of anxiety. I can’t grow that way.  I need to heed the warnings of this virus, yet not focus on circumstances, even the health of those I love. If I reside in fear with these unknowns it can strangle the lessons and blessings.  Instead I strive to lay them down, lay them at His feet, at the foot of the cross, lay down the heavy burdens.
Easter holds memories for me where I had tough mountains to climb, where I wanted waters parted and God told me, wait, trust, surrender and I wanted answers and His rescue right away but He was in the process of lifting me of of the pit(s). 
When I became a single mom, we spent our first Easter feeling alone and displaced. I remember that we had support but I was still swimming, feeling like I was drowning in the Red Sea, asking God..”Why have you taken me on this path?” Why didn’t you show me sooner that in my home that it was not safe sooner, why had evil taunted my entire family the Easter prior.???????” Where did this marriage, this family’s path get so twisted????? Shame because almost like my name. I couldn’t shake it because I didn’t know how to compare-‘mental’-ize how we arrived here.
Even before I became sick, God began to show me that my shelter, my hiding place, my refuge could no longer be in my home, in the people I knew, but it had to be IN Him.  I felt let down, betrayed and I was floundering to know who I could trust and how to course correct our ark. We were not rooted in any one place, but I wanted to know we were safe, together and then maybe, just maybe we could stay the course.    But God .....still had a plan, still does to take our hurt and collide it WITH HIM, the only truth in healing.
Psalm 32:7... “You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.
He began very slowly turning my mourning into more of a daily dance but it took walking headstrong into my greatest fears and the unknown struggles. The tides never overtook me and was not able to captain or steer the boat we were in because I felt powerless and at times hopeless because I couldn’t see the rainbow ahead.
My second Easter as a single mom, I was not in the home, in fact I saw my children the day before as I was in a respiratory and physical rehabilitation hospital fighting to get the strength to return home. I did not want to be back with my children, back in my familiar environment, (in control)  but I was not getting my way.  That Easter I ended up further away from my support, On this Easter morning I ended up being uprooted 3x to different hospitals all in one day with my final destination at Hershey Med Center in critical care. I can’t tell you the struggle I had in my mind trying to gather the strength to whisper calmly to my children that “all was well”. I wanted to reassure them, be present with them, physically hold them in person.  God showed me that He was working through the deepest pain that comes with illness. He was became both present with me and with my children. I felt that my sickness was a failure, but a God has shown me different. I had to lean hard with the strength I had in my critically sick body. He taught me that it’s not the condition of my body on any given day.  When I cry out to Jesus He is a restorer, redeemer, and refresher of my soul. I always felt a sense that God would deliver me to a new day. That Easter, I longed to connect with someone that could say... “He is Risen indeed”. I whimpered a pray to God about this need.  I’m telling you the truth, God answered.  I don’t remember how long after this request, but in walked my new pastor. He had journeyed 3 1/2 hours and He was there to physical share this chorus of Hope to a tattered and torn mother of 4.  As I learned to surrender more and more into His care, God showed up through others, nurses, doctors, friends, even my realtor, our communities. As my home and security becomes Him I have such peace.
I didn’t think God could ever USE me again until recently when a God broke through with a re-newed growing confidence. Many of you told me, I still had a purpose, but I didn’t get it until God whispered in my ear, “Debby, you do...not because of you but because I AM.  I was blinded by the evils of this world but I see that he uses people, even broken and those with barriers in the world.. like me to be A part. He has set the captive free and with God my barriers only exist in the world but the chains are broken within Him. I will never get it right perfectly, but neither did the disciples. Jesus throughout the Bible chose people to carry out his plans that had broken to be spoken and they grow. There is nothing our God can not do.
It isn’t easy going through the Refiner’s fire but I gradually see God working over and over and over, day after day, year after year. Each day, the beginning of that day isn’t seen as a battle of pain and problems becomes more of a celebration of the battles He can help me overcome. Yes I still have deep cries of my heart that I pray, but the difference is that from my lessons that turn into blessings, God has done more then I could ever imagine or write. He knows better than me so I continue to learn to trust Him. He shows me glimpses of the inner Debby that His Spirit is busy restoring more and more. (2Corinthians 4). My body may go through ups and downs but inwardly I can feel or sense myself learning to mount up with the wings like eagles as God has been helping grow me up.
Isaiah 40:31.....hope in the Lord.... renew my strength (Spiritual)....soar on wings like eagles.....run (energy comes from the Lord to continue) and I do not ...grow weary,  I walk (with His Spirit) and not be faint!  I am under His wings. These words help me know that it is well with my soul. 
All my deep cries, even now, find how to rest in this hope. He will answer, in His ways. This past summer my family read through and studied the book of John and it took me on a journey to discover how God was saying to me through this book.... “Debby, I AM the light, the good shepherd, the Way, the Truth, the life, the vine! Etc. These are things I can relate to and grab ahold of with faith when I can’t discern clearly what is up ahead.  I can’t hide away in fear, but I can take shelter as I wait out the present storm that this world deals out.....even what this pandemic has caused. In my Christian Sarcoidosis group, when someone dies, they post, “another snowflake has fallen” because the granulomas that form throughout the body’s organs look like snowflakes or better yet snowballs. Instead of thinking of someday falling like a snowflake, I think of being lifted up to be with the one who created me so uniquely and the one who knows me the best.
Back to Easter....I have other memories. I came to the Lehigh valley over Easter weekend and found this home nestled in the perfect community for this family.  I didn’t see it quite yet in 2010 but I see it now almost 10 years later.  A year after we moved here I was stuck in a nursing home through the early months of 2011 after this disease entered my central nervous system, bladder and lymph nodes. But I came back home at Easter to a home that could accommodate me better. My kids were all in their teens and the youth group of our church home now wrote encouraging messages to the family and brought them for us to crack open these eggs and feel our Spirits lift. I wasn’t always “home” with my children, yet God gradually became a refuge for them and they are rising above their challenges. They too have ways to give and be part of ministering and serving. They will have their places in this world through the troubles of this life. They learn to depend on a good God through faith.
There is Hope. 
We have been connected to our care team at our doctors offices. We find that in some ways the phone and video visits are working better than some of the struggles we had with transportation and organization of all our appointments etc. But there is only so much you can do through zoom and over the phone.
I have had ongoing struggles with shortness of breath and when I have attempted to do activities Im excited about I have run into several episodes of distressing respiratory and nervous system symptoms that require more intervention here at home that take longer to resolve. Caregivers and nursing are still coming periodically and this assures me. My pulmonologist is aware of my distress but the respiratory testing he would like to see me have are not up and running. He may have me come in for the ultra sound. I’m praying about this. I’m not even sure where the symptoms stem from and some are not new, just a bit more intense. I hope it’s from this past pneumonia. I’m getting more nerve like sensations in my arm and up into my jaw that-overcomes me and I sweat profusely and the weakness becomes more noticeable for a time. I rest and then attempt to resume slowly but sometimes I end up back on my back not knowing what hit me. Pray for physicians to discern the right treatments for patients at home as they battle on the forefront with the most critical cases. My hands have been used more and at night they hurt and my thumbs freeze and will pop when I can eventually move them. This is new. I was also scheduled for more evaluation with my kidneys, bladder and spleen at Hershey but obviously this will wait as well.  I still work for possible pain relief. My lung doctor also spoke of trying to expidite me to the Sarcoidosis specialist at Hershey but this is not even a thought as long as I can remain stable. It’s like the lights at a stoplight where many of the concerns in the world for y are at either....yellow for caution, red for stay home and green, go only for for our worst emergencies....lol
Geoff has been more successful adapting to his breathing machine.  He has central and obstructive apnea that is monitored through a modem (similar to mine) His apnea has gone from 30+ events a night to about 13 events. This is good news. He still is overwhelmed at times with daytime sleepiness but this is part of Myotonic and he is keeping busy, as his body allows. Because no one is working and there aren’t as much outside activities, I have seen my son, a man get a better grasp on being able to focus his attention on better decisions and better hygiene and choices.  I see this with Jennifer as well. This has actually had some plus-es as we all work on focus, attention and repetition with tasks given them some opportunities to instill them without distractions. Please pray for Geoff’s mental health. He is needing some further evaluation for this. So far he is connected to resources. Because attendance at a support group within our church was discontinued earlier this year, Geoff found a group at Faith Church that he can attend through zoom. My kids know how to zoom but I’m still adjusting to this.
Jennifer had the oral surgery on the left side of her mouth in a February and is again awaiting a decision about when it’s safe to go back in for the rest of the oral surgery.  But thankfully more of the infections were occurring on the side that is already done.  She is tooth pain free right now.  Jenn got her pacemaker/deflibulator last year and was in the hospital on this day. A year later she is heart strong ...striving and thriving. Praise God for her care team and His strength when she might feel weak. 
Jenn works with a weekly coach and in one of our recent discussions early this week, her coach reminded Jenn that one of her desires was to work with flowers or in nature (even a forest ranger). We joked that we don’t have many forests so our focus was on flowers. Well God knows the desires of our heart. This past week, a very special friend dropped gorgeous flat of daffodils and pansies from their greenhouse in Hatfield. Who would have thought we would be blessed as a family this way.  Well now we have a gardener that can help us with our abundant supply. We even share a couple at this time of year.
Brittany right now is not scheduled to return to work until at least June. She has social anxiety in unknown situations but she is working more intently on issues she faces now that she is home. She has come so far. She can be proud of her hard work. She is our puzzle queen. We have no shortage of jigsaw puzzles because this is her thing for years. But We also found a different puzzle maker online to make crossword, find a words or hidden messages and we have had fun challenging each other with. Britt is studying the spelling of challenging words to help herself as she looks forward to starting at LCCC in the future. 
Emily has been painting up a storm, creating with clay and trying new crafts.  This is also a way I am dealing with occupying my mind as well.  The girls and I got the sewing machine out, and tried our hand at making our masks. Emily started working on learning more sign language to a few songs.  It’s hard to believe that 28 yrs ago I was learning ALS to communicate with Jennifer as an infant.  But she surprised us all with her voice when she said her first sounds shortly after her trach removal.  She’s never stopped talking...lol
Monday, Emily has a training period through Zoom to become a direct care worker. While we are quarantined and short on home care workers, they allow a family member to fill in. We will also begin to use a new agency(Bayada) in the weeks ahead. I still have 3 faithful care givers that are able to work but many slots have been left open. I thank a God for the very perfect provision he has supplied during these times.
I am so very grateful for the community of support we can share on line as we all seek ways to cope at home. I love all that our church is offering. Unfortunately being home for extended periods is not a new routine for me, but it makes me grateful for each and EVERY  one of you and the ways people are sharing talents and encouraging one another.
Have a blessed new Easter experience.  keep in touch. 
Love from the Larimers.

A little Easter Poem

Hope is here
Have no fear

Christ’s body was broken
The tomb is now open

Our Savior has risen
The Spirit gives new vision

He is present here today
The truth, the life, the way

This is the right plan
For  you and all of man

Receive in your heart
Christ needs to do His part

He for-gives us today
Give His love away

Open your mind
To a Good God
Who is kind.








Journal entry by Debby Larimer

I’m very grateful that the call finally came this week from my hospital visit two weeks ago .  I am negative for Covid-19. I’m very happy to know that this bout of pneumonia too will pass.  It took a load off of my mind knowing that I was not a carrier. 
We even celebrated as a family. A dear friend that does not live locally had the idea of treating us to food from Salvatore’s, a pizza shop a few doors down from us.  We ordered online and the kids got out to pick it up. It broke up the day and we enjoyed our time celebrating togetherness. In a family of 5 who struggle with a variety of issues that could cause any of us to struggle to come out on top, if Covid19 came through our door.  I think it’s very hard not to see what is happening in the world, in our counties, in our neighborhoods and world and not shed some tears.  Yesterday a store in my community was closed because of positive testing. On my kid’s walks they pass by this store. My friends and neighbors frequent here for snacks, gas or groceries. One concern I have with this virus is watching it impact someone close to me. People are suffering alone, losing their battle alone and we are in our homes waiting and experiencing the isolation. I do believe that those who have had to change their lifestyle due to chronic health concerns have learned to adapt over the years in order to strive toward longevity. I have needed to chose to use my limited strength in my home and if there is more energy or strength, then I have used it to venture out.  Fortunately this past year I have been able to do more. I have attempted to extend my days by learning how to conserve my strength, health and time. It has been a learning process to balance what is best and how to avoid certain consequences of over exerting or subjecting myself to things that could affect my ability to stay in my home.  I know how important it is to trust and rely on God. I believe that nothing filters through His hands without His ultimate knowing. Years ago I came across these verses when it hit me that I was in a groove of questioning God and I would feel I had a right to tell God what to do in my life, others lives and His world. I wasn’t listening, trusting and inviting God to have His way in my life each day.
Isaiah 40:13 “Who can fathom the Spirit of the LORD, or instruct the LORD as his counselor?”
Romans 11:34“Who has known the mind of the Lord? Or who has been his counselor?"
My pulmonologist touched base with me and the tests that he wanted ASAP have been postponed. He reassured me that when they can resume I will be on his list to attend to. I also was suppose to go to Hershey to work on my pelvic pain, episodic bleeding and explore other options.  They rescheduled me for June for now.  All of our lives are on hold and I am trusting one physician, the faithful Great Physician, who is present with us and never slumbers or sleeps.
 I need to hang onto hope and remind myself and my family that right in this moment we are winning a battle. We are OK. Even if times are so very overwhelming, I need to fight the fear that wants to engulf so many of us. When praying with my family, I encouraged my children to share their concerns, questions, doubts or fears. God understands all of the things on our hearts, even the things we may not verbalize. Psalm 139:2 reminds me ...”You know when I sit and when I rise; you perceive my thoughts from afar”
We need to be real about how we feel, but then humble our hearts so He can work in and through us and those around us. Even in the muddle or middle of an epidemic.
I just love the Psalms during the ups and downs of my life. Psalm 119 is a  l o n g of chapter with 176 verses, but it is a chapter of the Bible that can calm my fears and carry me through a dificult time. It reminds me of the power of word during hard times. Last night I was soooo rest less. I had both physical pain and mental gymnastics so I went to this chapter
119:28...My soul is weary with sorrow;  strengthen me according to your word. 119:114....”You are my hiding place and my shield; I hope in your word”.  His living word is where I can go to find truth and instruction. 
As this week has unfolded I have faced some of the realities. I belong to a group of people who live with Sarcoidosis from around the world. There have been a few who lost their battle due to lung involvement and compromised immune systems in the past month. One young girl, 21, had this illness for 6 months and now she is gone. I’m just reflecting on my fortune to have life, in my home abundantly. I’m overcoming but also struggling to come to terms with the fragility of life. I know I’ve gone through periods where fear was a tough hurdle to outcome. Right now the threats are real for all of us, BUT we do not stand alone.. Even those in the medical field or those that still are working out in our communities to meet others needs. Help with our utilities is still available, we have the internet and phones and I have the support of my caregivers...I continue to pray along with you for protection over them, rain down peace that can only come from the Prince of peace. Help us all to work together in our homes and in our communities to cooperate first with what God is telling our hearts to do and then obeying the guidelines that are being enforced. 
Right now we made the decision to not have Geoff and Britt return to work at the supermarket. In fact they requested instruction from their PCP to see if they could return because they need a doctors note in order to return. They still have not heard back and as we have prayed more about it, we feels it’s not wise for them to be working because of the myotonic dystrophy and not knowing how this could affect them if they came in contact. We also want to take precautions for what might be brought back home.  Jenns business Is still on hold as well because they work with food preparation.  
Our family has never ended a day in true need. God has always provided, guided and given in ways that support us Spiritually, emotionally and physically. Many times others have shared in ways we never expected. We may be low on TP but we are not out yet. There is always enough to sustain us or creative ways to thrive.  I feel my adult children are dealing with this pandemic fairly well. They are accustomed to being limited with transportation, needing to wait for things and, unfortunately, living in a mode of making the best out of situations. Life is unpredictable and stability is a wonderful thing in our lives, but when uncertainty comes or we head into the unknown, I think dependence of God becomes a strength. At least I pray for this.  I have been so blessed watching the ways God supplies the unexpected. This God given security comes from within, in our relationship with God. So even if I end up away from family and friends, I always know He is near.
I have been painting, writing and learning how to draw using my I pad pencil. Emily is creating with polymer clay. Jenn and Britt started an online exercise program with PA spec olympics. We got back to our Friday fun night after two weeks. Geoff chose the movie and we had a backwards night by having eggs, OJ and delicious multigrain bread that someone shared with us. 
The song, A Mighty Fortress is Our God by Martin Luther continues to come to my mind. My grandfather was a pastor and I was privileged to learn and hear many hymns. This beginning of this hymn reflects on Psalm 46 verse 1, "God is our refuge and strength, a very present help in trouble." You can easily see where Martin Luthers thought came from. Another English translation of this hymn uses “A safe stronghold our God is still" but A mighty fortress is our God" is what sticks in my thoughts. Keeping in mind that this hymn was written in the early 1500’s. Thiswas during the period of exile and he was translating the Old Testament. He wrote it following the Reformation day....Hooray!
A big Thank you to the friends who picked up my prescriptions, those that are looking for TP and the grocery shoppers, and everyone that is working tirelessly to serve in our communities. 

Psalm 46
God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. Selah
There is a river whose streams make glad the city of God, the holy habitation of the Most High. God is in the midst of her; she shall not be moved; God will help her when morning dawns. The nations rage, the kingdoms totter; he utters his voice, the earth melts. The LORD of hosts is with us; the God of Jacob is our fortress. Selah 
Come, behold the works of the LORD, how he has brought desolations on the earth. He makes wars cease to the end of the earth; he breaks the bow and shatters the spear; he burns the chariots with fire. "Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" The LORD of hosts is with us; the God of Jacob is our fortress. 

A Mighty Fortress Is Our God
Song by Martin Luther
Lyrics
A mighty fortress is our God, a bulwark never failing;
Our helper He, amid the flood of mortal ills prevailing:
For still our ancient foe doth seek to work us woe;
His craft and pow'r are great, and, armed with cruel hate,
On earth is not his equal.
And though this world, with devils filled, should threaten to undo us,
We will not fear, for God hath willed His truth to triumph through us;
The Prince of Darkness grim, we tremble not for him;
His rage we can endure, for lo, his doom is sure,
One little word shall fell him.
That word above all earthly pow'rs, no thanks to them, abideth;
The Spirit and the gifts are ours through Him Who with us sideth;
Let goods and kindred go, this mortal life also;
The body they may kill: God's truth abideth still,
His kingdom is forever.

Journal entry by Debby Larimer

It has been over a week of working on recovering and getting strength back. My chest is still quite sore and the coughing continues, along with head and facial pain. It is a challenge but the fever is done, and my glands are improving. It is over a week later and the latest on my test results for Covid19 are pending. They needed to send it to a different lab. I called this morning and my doctor will get back to me.  My main concern has been my ribs and the discomfort of coughing. When I tried to do a bit more over the weekend to strengthen, I ended up with great restriction with my breathing and it took time for me to get air moving in a comfortable way. It is scary when you can not breath. I am using my bipap, breathing treatments and inhalers to try to help with wheezing, weakness and tight breathing. 
Our home is no different than yours.  We are physical distancing here, but still trying to be social in creative ways. No one is working in the house so we are all home together.  There have been blocks of time that my attendant care is unavailable so it has been a great help to know I’m not in this home alone. We are helping one another in the ways that we can. Emily has been busy filling in the gaps during these gaps. 
All of our appointments, tests or procedures have been rescheduled for months away. 
Geoff was tested last Monday for this virus and his results came much sooner as not detectable so that is good news and I hope this fact lessens my chances.
I’m trying not to decondition, yet I can’t compromise my breathing.  
Jennifer’s dental surgery is postponed for two more months. Fortunately she does not have pain currently.
Brittany is reading a lot and we all have been on social media quite a bit. We are thinking about breaking out one of her puzzles. 
We are being creative with our meals.  I’m glad our cabinets were recently reorganized. We have had some friends that do not come in, but drop off some of the supplies we have needed. Everyone is trying to scot out toilet paper and paper towels when we get low. I’m so grateful for these dear friends in this community. Other than that we are inside. The support staff that work with a few of my family have held their sessions or meetings with me over the phone or computer.
Over the years I learned how to carefully make decisions on how to conserve energy, how to weigh the risk with certain outings because of how much strength and energy it takes from me. I also have a weak immune system and some medications weakened it more. So quarantine does not feel as new to me.
During this time where the entire country, the whole world is working to limit the spread of this virus’,. It’s not easy for me to just say, “You need unwavering faith in God” , but this is right where our focus needs to become. We can bear our burdens with others and trust that God is able to quell the storm. It also doesn’t mean that we won’t feel the pain or hardships. God knows every fear or anxious need and when we acknowledge this to God, He is there to comfort and guide us onward.  He is holding onto us and we need to hold on to Him. 
Psalms 118:8 "It is better to trust in the Lord than to put confidence in man"
We are all crying out in our time of need. I see how God matures each of us as we go through times like this with the help of His Spirit moving in and through us. 
We do not need to turn the world crisis into a personal crisis of Faith. Change is hard but when I remember that ..”Jesus Christ is the same yesterday, today and forever” Hebrews 13:8, it helps me to sense His sovereignty over all.  He is constant, the same, and this can be a comfort to know He doesn’t change even when our world is.  Malachi 3:6  “I the Lord do not change....”
Deut 31:6 tells me about my need for strength and courage....”Be strong and courageous. Do not be afraid or terrified because of them (this health crisis) for the Lord your God goes with you; he will never leave you nor forsake you.”  
Thank you for your friendship, phone calls, messages, or connection on social media.  
Praying for all of our circumstances
Good night.

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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