Journal

Journal entry by Debby Larimer

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

Journal entry by Debby Larimer

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

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

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

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

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

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

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

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


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

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

 

Journal entry by Debby Larimer

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

Journal entry by Debby Larimer

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




Journal entry by Debby Larimer

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

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

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

Debby, Jennifer, Brittany, 
Geoffrey, and Emily Larimer

Journal entry by Debby Larimer

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

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




 

Journal entry by Debby Larimer

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

Journal entry by Debby Larimer

Yesterday I was continuing with nausea, dry heaves and nasty feeling symptoms. Motion and positions are hard because of strange sensations in my head, ear and beyond ..making it hard to function. My strength and energy level are very low and so I had help coming up with a plan to see a doctor at my family practice, hoping they knew my chart and narrow down what was and wasn’t happening.  
The ride to and from my appointment was making me feel seasick but I made the round trip.  I saw someone new. The doctor in training explained I was having what he thinks is a viral form of vertigo. He suggested giving it a bit longer to run its course to see if it resolves or I feel stronger. If not, he mentioned prescribing steroids for the inflammation but couldn’t be sure if that was the right course of treatment. So I prefer to wait to see as well.  During my appt. I had a few other questions and he admittedly said that he is a sports medicine fellow filling in and didn’t have the answers. One suggestion he made was to follow up with one of my specialists for more than one of his findings, but I’m not sure he understands that this is not as simple as it seems.  Healthcare is changing for many and I’m learning how it affects many and there is a more recent not so positive rippling effect for-us all. It has nothing to do with me, but has everything to do with the changing times. It is getting rarer to find face to face quality care for so many. Jenns referral was turned down for her teeth extraction. We are no closer and she is fighting another infection. We got two numbers for Reading and a clinic in Philly to try on Monday.  Geoff was referred to an in-house Psychiatrist after his former dr left. His doctors all agreed that to have an in~network mental health provider would benefit his care. Today they told me that they would put him on a waitlist for 30 days but after that his name would be taken off.  We have him lined up for next month with a doctor, but still hoping maybe a door will open or a crack in the door would help. Pray these issues unravel for better outcome so they know that all is well. I do not like watching what “feels” like people fall through the cracks. We appreciate the outcome when problems get solved or you know you find a new connection to try. My oldest 3 also were getting some in home service help from a grant. These helps will be ending around the start of the new year.  Geoff has been on emergency status for 3 years and this week a group of the supports people got together to look into any care that might be available, if any openings. These are needed to plan for the future, but programs are full and it feels like they need to win the lottery to find openings to not only assist them, but myself as well.  I don’t have an attitude that demands or expects people to get me answers or at least I try.  I really try to trust that each day will unfold with possible opportunities. I can’t expect too much will change with the current trends and cutbacks but I will fight for what I can find. These is no need for me to take it personally. Every family is struggling to find their resources. Thank you for praying for these matters. God has been faithful to meet each need. 
I had a very rough night and Ive been coughing, gagging and trying to take those tiny sip sip sips and get them to stay down to ensure I’m hydrated. Each evening this week, I have tried to eat something bland by mouth only to have it back fire later.  The doctor yesterday recommended trying  even if it doesn’t stay. This is easier said then done, but I know fluid is the most important. I’m trying to limit eye movement too, like that’s easy too, because if my eyes try to look certain directions ( like eye movement to the side or certain angles)  I had  this BPPV vertigo experience once before, a year ago but I don’t recall getting distress signals when I looked in diff directions. Also if I move up or down or turn my head too much, I’m spinning nauseously feeling intensity in my head/ears or whiriling or short intense ear sensations that sound loud and make me uncomfortably aware of motion. 
The doctor drew a picture of the ear showing how it’s like a  labyrinth with a few loops and there are fine hair like fibers and fluid keeping us in touch with gravity, with these crystal~like materials that have something to do with movement. Apparently when the crystals move into your canal or out of place for whatever reason or you have a virus it messes with gravity and your sense of balance and move. It can be hard to comprehend how problems within your ear can bring about so much bodily chaos.  This is my experience. I have sweats that drench me  (both day and night) then I’m freezing and chill~like.  I’m very irritable, very... so needing to back off and chill mentally. I’m utilizing Zofran, keeping ice on my pounding head and trying not to feel so restless when my rest is less now. I’m sure many can relate to sickness like being sea sick that makes you want to escape, only to find that you can’t sleep without pain or discomfort entering into rest and waking sick all over.. 
In my lifetime I never heard of crystals in your ear getting out of place or what vertigo does to a person, until I had It almost a year ago. It was both scary and life altering. In the hospital they found some brain changes that they repeated MRIs and I’m assuming resolved.  They started PT because there are exercises to help and ways you can try to cope.  The doctor yesterday feels it’s more viral and I’m praying it runs it’s course. BTW.. BPPVertigo is much more common in those of us 50+ 
So much of what the doctor said made sense but I wasn’t feeling very reassured.
 The patient room I was in was designed for children and there was a zebra on the wall.  The thoughts running through my head were a saying a doctor at Hershey med center shared... something to the tune of this .... ‘when you hear hoof beats, a doctor is trained to look for horses not zebras’ I do not like going to unroutine appointments because I often feel like that zebra named Debra (my birth name). I’d rather be the horse, where I would have a clearer cut treatment care in general. How many times do I need to called complex or complicated like a broken record or someone stuck in that grove. I often have symptoms that do not fit together nicely.  It is not easy for me to share or unravel the mystery so I tend to hold back information afraid of how the doctor will perceive it and start typing away, charting unbeknownst to me. Like Yesterday, I can’t expect a new doctor to get the whole picture or understand the picture I’m formulating in my brain, BUT I often ask my questions, just hoping someone new will say, “there’s an ap” application for that. An answer, a new treatment or explanation what is happening or not occurring.
My  health is  is very isolating at times. I don’t always know how to adapt and deal with how this dis-ease has affected my social life. Times when I have had improvement or progression in the right direction, I get glimpses of who I used to be physically, and who I dream of BEing again...who I still am but can’t function in the same ways. It’s hard not to get bogged down by all the misunderstanding, the mixed expectations I put on myself and unknowingly people have sometimes placed on me,  Even when I go to appointments, I feel intimidated by situations when face to face with those in the medical field.  I feel raw and small when the dots do not connect simultaneously.with a treatment.
When asked,” Do you have pain anywhere?  My pain wants to scream, “Where don’t I have pain” ?  If a friends asks how I am.  I sing song back...GOOD orfine because I  do feel ok about things, YES, I’m OK, good, fine. I  got through  things today, yesterday, I’ve got lots to be grateful for. But I miss the Debby that used to be able to share about professional progress, physical accomplishments or the agility I had to get around and accomplish life or make choices.  I don’t feel independently proud of who illness makes me.  Instead I feel Dependant on others to do the darn simplistic task. When I observe someone carry out a task in a heartbeat 💓. that takes me 3x as long to do.  Illness takes away your ability to have control. You can’t often change this, I can’t control so much what I CAN DO and it can feel near impossible to do what I dream of.  My children may feel like they do twice as much for me, than I do for them.  Yet I appreciate that they are willingly still here because I get to catch up on what I missed when I wasn’t as alert, home or able to engage in their accomplishments and endeavors because I was too sick.
Another thing that pain impact are those areas of pain that become chronic, From what I can tell, not many healthcare personnel know what to do about pain or breakthrough pain that persists. They try to manage ‘Chronic’ pain, but it has such a stigma, like a patient has chosen it, or resigned to it. I have never encountered anyone that likes their persistent, nagging pain or inabilities-disability-diffibliities. It’s more like it produces irritability and irritation, If Iron sharpens iron why does my suffering burden rather than make relationships easier. 
Proverbs 27:17 “As iron sharpens iron, so a friend can sharpen a friend”
Its hard to realize that people go the extra mile to help me or help right at the bedside, curbside or help me with the basics of life.  All I desire sometimes is to engage in helpful ways in others lives. It is nice to reciprocate. I’d love to have families over for dinner again.host a Bible study or go to my children’s appts, events and not need extra care.  I don’t want to be a “shut in” when I’m only in my early 50s.  I want to be part of the social scene, but I appreciate my online friends and acquaintances so I still feel apart.  My self confidence gets defeated and feelings of insufficiency steal my joy. , I don’t have a fix for me and when I see it reflected in the bewildering eyes of my adult children it crushes me.  I grapple with how much alike my children and I are,  Who adopted who? Right? They bless me. 27yrs ago, I thought I would somehow help them overcome and become. I understand the balance between love and boundaries. How to make friends with peers their own age, They know they are different, not because I told them that, but because this world often does set them apart, I can frown upon their awkward ways of performing and working in their hiccups. Professional resources that are accessible to them currently  are dwindling. When it makes sense to them both logically and experientially, we look for breakthrough. Their young adult needs are often . I struggle to find answers for them, just like well meaning people would like to see me different,  We all are reaching, trying to touch greater things in our personal life and those around us, But life is hard, HARD, complicated and complex so I know I’m not alone in this journey.  
I’m learning something more about the s
When pain stays around you try not to express it or I might squelch it until I’m  alone, it takes its toll on you. You can’t get away from it, take a vacation without it because it’s there in a unfriendly way. I’ve learned how to accept it, adapt with it and work with it, but it still limits me. You can’t always win over it, so you try to seeing it as something, that is what it is. It doesn’t heal the way you expected, or the ways doctors or those close to you may hope and expect it to either.  When you are not the normal hoof beats you try to hide your stripes., 
I heard someone say this week on a post that .... “Everyone experiences pain differently” it drives home that pain has many faces...physical, emotional or relationally and the list goes on. I don’t believe anyone really wants to be in pain, stay in pain or downright want to create pain. Pain is intense whether you scale it a #1 or #10+.  Pain is pain.  My mother told me something she heard years ago that stuck...“The Mack Truck on someone’s foot, hurts just as much as the Volkswagon (VWBug) on another’s foot.” This saying connected in my brain to understand noone has or handles it better than another. We all hurt at the core and it’s often something we as humans try to push through, push aside or attempt to ignore. But why do we just bury our need for release or to receive compassionate release. We even freeze it like an iceberg, so we can pretend perhaps for so long that it isn’t there. We can convince ourselves that we are too tough to express it and take care of softening the heart toward it. It’s often in there and we see the smoke or feel it smoldering but we don’t take Jesus with us to the fire, We need to seek out the source. Often coping with the temporary pain or the chronic pain can lead us toward learning about ourselves, others and the God of alll compassion.  Even the worst suffering can become something we can try our darnest to do what we think we can’t. I think embracing pain grants grace toward ourselves and others.. I believe God meets us right there where we are and offers us His hand to face and keep pace with our difficulties, pains, strains and accept where we might need Him more than we ever knew was in there. Learning about others pain teaches us too.
“We must learn to regard people less in the light of what they do or omit to do, and more in the light of what they suffer.” — Dietrich Bonhoeffer
 I do not always hurt well.  I get irritable, I get discouraged, I feel alone. I get mad.  Maybe with intention or without intention.  it can propel me to God or i could separate myself from a loving relationship with God because of hurt, bitter unanswered questions. Through it all.  He’s the only perfect way! Perfect truth! and life! He lived a perfect life and died because He knows I can’t live or suffer selflessly.  People try to be good but we can’t save our selves. Thats Gods gift to us. Do I choose to accept and believe and invite Him into our pain, past crooked way or our day.. We can never peacefully unravel all that we encounter without being like a sheep trusting the Shepherd.  See Isaiah 53:6+ We all go astray.......
Psalm 23 “The LORD is my shepherd, I shall not want.”
John 10:11“I am the good shepherd; the good shepherd lays down His life for the sheep.”


I am speaking this to my own heart. I’m always trying to get it, understand it or get it right but I can’t do it alone or without God’s grace... COME...
I have used this verse a lot in example because I believe when He tells me to take up my yoke (linking two or more for greater strength) and learn from Him my burden will lessen, as I become less He is greater.. My part is to seek him and to try to yield, abide and grow because His word is truth.......Matthew 11:28-30Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”  
God has taught me to become teachable. I try to wrap my myself around new truth about who I am in Him and because of Him, then it helps me do my best to not try my own way, apart from Him. I fail all the time, but He lifts me up in Spirit and I can go His direction not mine.  We can work WITH God to bring about His purpose, even if we can’t see it clearly., it’s all about His glory. He gets the glory, or credit for anything that grows from the seeds planted in my heart..
I am very glad I have a forum to share about my struggles and victories.  I am grateful for all of you. This gives me an outlet for me to connect. I love seeing people face to face. I’ve been granted that opportunity to connect and be a part of some of the action.  But I also appreciate that when I can’t get out that I can share and know others do care. Please pray for rest tonight, for this viral vertigo todissipate or disappear totally. Pray my strength and endurance returns. Asking a God for rest for you and I.  Thank you for praying for my family, for helping with insight or suggestions to better their lives
I care about you too. i hope you know that I support you, care about your struggles and triumphs..  I welcome you to share with me, if you like. I want to know you better. It would make my heart happy to hear from you about what you are doing and what brings you joy or sorrow. 

“Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the Lord comforts his people and will have compassion on his afflicted ones.” Isaiah 49:13

“Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord, who has compassion on you.” Isaiah 54:10


 

Journal entry by Debby Larimer

Today is a sick day. The past few days I started experiencing some symptoms that took its toll on me. I basically am struggling just to change positions. Flat on back, low strength, multiple breathing treatments to try to resolve the wheezing totally. Terrible head pain that is packed in ice and I’m either unable to sleep or waking up in sweats. My room is cool because breathing is painful and sore . My GI distress is heightened. I have tightness and very very dry throat and dry gagging. I started taking mucinex early in the week thinking that might take care of anything brewing but that does not seem to be the problem. I have Sjögren and that is always part of the autoimmune soup. There is insufficient moisture in certain glands of the body, including the saliva-producing upper GI issues and tear-producing eye gland dryness. I have dry skin, brittleness and just dry to the bone, I been having more inflammation in places like my hands, feet and the chest wall. My fingers can be painfully hard to bend. Right now Im trying to rest, do lung related care and drink. Food has not been agreeing and causing painful issues.  I also have nasty Tinnitus and some vertigo which may be adding to nausea.  I’m hoping and praying that this is all just part of a flare up and not a complication. This day has very hazy and even a struggle to decide to keep my eyes open or close them to save my strength.   
The nurse was here yesterday and reminded me of energy conservation. I may get extreme fatigue but my fatigue is not a sleepy type because my mind is hyper by nature. This often prevents me from resting well. My pain feels more hyperactive as well. Instead my muscle movement is impaired, weakness like a heavy body suit, limited joint motion, compromised breathing, numbness and decreased endurance are big time. Even when Im feeling better, I may set out to sit in my kitchen to do something and by the time I get there and try to get settled up, my body (not my mind) is exhausted. Tasks I’m excited to do or try can become daunting and if my heart rate shoots up or chest begins to squeeze, then this complicates the process as well..  When I’m at church or throughout my day if a favorite song comes on to inspire me, I want to belt it out or clap but I’ve learned to hummm because I only have so much lung capacity and neuro coordination in me.  Prior to my diagnosis I was capable of pushing, striving, seeking out new ops and tried to use activity and physical activity to fuel the hyper flame in my head and heart. It fueled my adrenaline. My mind has never changed, .....Systemically, disease has changed my body, organs and bodily function, I fight against this every day, chronically and life altering. I’m still Debby, still now inside. By the grace of God. I enjoy and enjoyed being as engaged in life as possible, Even during my most challenging time physically, inside my mind and heart, I have felt Gods presence and try to do the very best and have felt like my biggest job is to be a mother and steering them to Godly decisions and further independence. It is my hardest and most rewarding opportunity from sun up to sundown.    Pain also drains out whatever reserve of energy I may have left . I really try to continue on my tasks each day, often starting and needing support to carry out.  Because I look and even sound good...better, it is sometimes a two edged sword because it pushes me to want to feel stronger and live longer. Yet on the other hand, it can sometimes deceive me and those looking from outside in...into thinking I am doing better than I actually am.... If my organs and fearfully and wonderfully made-intricate internal body is decreasing then I pray until I get to Glory I can increase in my mind and Spirt. .. 2 Corinthians 4:16-18 and 5:1in AMP version.

“Therefore we do not become discouraged [spiritless, disappointed, or afraid]. Though our outer self is [progressively] wasting away, yet our inner self is being [progressively] renewed day by day. For our momentary, light distress [this passing trouble] is producing for us an eternal weight of glory [a fullness] beyond all measure [surpassing all comparisons, a transcendent splendor and an endless blessedness]! So we look not at the things which are seen, but at the things which are unseen; for the things which are visible are temporal [just brief and fleeting], but the things which are invisible are everlasting and imperishable.” 5~

5:1-5. “For we know that if the earthly tent [our physical body] which is our house is torn down [through death], we have a building from God, a house not made with hands, eternal in the heavens. For indeed in this house we groan, longing to be clothed with our [immortal, eternal] celestial dwelling, so that by putting it on we will not be found naked. For while we are in this tent, we groan, being burdened [often weighed down, oppressed], not that we want to be unclothed [separated by death from the body], but to be clothed, so that what is mortal [the body] will be swallowed up by life [after the resurrection]. Now He who has made us and prepared us for this very purpose is God, who gave us the [Holy] Spirit as a pledge [a guarantee, a down payment on the fulfillment of His promise].” Both these chapters in 2 Corinthians 4,5 have ministered to my mind and soul.

Because my mind is hyper and often trying to engage, I’m known to talk and when  I try to talk and talk and talk from my hyper mind and spirit in an attempt to get all the words out before the “air in my balloon” or lungs runs out. So when I encounter the debilitating fatigue that I’m having now, talk is like using cheap batteries, that fizzle and drain even quicker so I need to conserve. I can write or ramble mych better, so here I am tonight. Writing + sharing in ways that have often benefit me and help me grow. 

You all have helped bear my struggles and burdens. I have learned through you and also blessings with skin on.  

Matthew 11:28-29 “Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls.”

”Learn from Me” says God....Teach me by bringing it all to Him

It was thrilling for me, prior to this disease, to wake up with energy and strength. Things I often took for granted. Even now I have much to be grateful for, yet I groan. My body use to need to run, rollerblade, take long walks, bike, ski, ride horses.  When I was in motion I had the ability to process information as I took in my surroundings. If I could get away either on foot, bike or in even the car then I could feel that wind, the breeze, the wind or air blowing through my sails, surging me forward with intensity.  Taking in the sights, sounds, smells in the air still does my body good. I used to be a social butterfly ... I smiled or waved at those I passed.  If I wasn’t running or blading during a part of my day, I was walking, talking and living life experientially. I loved to attend studies and groups where I could interact. I served and took part in things. Sometimes I yearn to do my part rather than feeling set-apart in social events or get togethers

 My best thoughts, plans and next steps flowed best when I was outside or among people.  Of course activity levels can change as we age but for the most part, I like to like motion.  When I was healthier, years ago, If I wasn’t scheduling time to exercise or nature walks....swinging on a porch swing late at night,.  I almost needed a more chaotic lifestyle to feed my hunger for more or try to experience it all.

Weeks before my first congestive heart failure, I got painfully injured,  it was from this injury that doctors got a closer look at the infiltrates in my lungs and discover my CHF.  
The accident happened on a cool early summer evening ....I grabbed one of our former dogs, and set out with my middle daughter on an evening walk.  I was 40yo and I decided I would borrow my youngest daughters new shoes with wheels called Heelys. While we were talking and walking, we ventured down a steep street. We started down it and I threw caution to the wind and attempted to click up my heely wheels and roll, while holding the dog’s lease. I was unaware just how to uses these shoes so when my coast became an out of control stunt that caused me to reckllessly do a flipping fall that landed me in a split like position, I tore muscle and ligaments from my pelvic area of my left leg.  It was not something I could get up from and so my daughter summoned help. I spent over a week in the hospital and came home to recover on 1st  floor in our Lock Haven home. Most injuries yield full recovery and I was trying to “bounce back” into daily living.  I was a single mom and I had an important things to do. It was a season in my life where I was needing to resolve things with the courts. Then nearly 2 wks after my flipping injury I was taken my ambulance for the second time in my life (can’t count the rest) and days later woke up in intensive care at a small town hospital.  From this initial fall, then CHF, I started needing return hospitalizations, rehabilitations, and tests for numerous Pneumonias, and evolving lung related illnesses. On Easter I was sent from a respiratory rehab to a total of 3 hospitals in one day. Final stop was Hershey where they began to work with me and not only focused on my lungs and heart, but how Sarcoidosis (and then some) was affecting me systemically. Fast forward 13 + years “This is me”...I’m beating to the beat of a different drum....
I’m still me inside but my life is very different but in so many ways more richer and thankful to reminisce and see some of my tangled up road forward.
For now I need to drink my Gatorade and pray that my current complications will resolve.
Please pray....not only for me, but my household here. I really want to be part of the upcoming week...Chris’ birthday celebration this weekend and Thanks-giving, and love giving days ahead,  All the positivity is my attempt to reve myself up, but I still feel like  a train wreck physically today. 
Thanks for consistently listening, supporting, helping with each family member and being that ongoing wind in my sails. Thank you Lord for being the breath in my tired lungs.  Give me longevity, healing and hope during the upcoming season of life.
Lord, Con-serve the energy needed for the journeys ahead. Praying each of my friends find answers in their struggles no matter how our bodies function....in any shape or form, we can all seek abundance in this life in whatever circumstance you or I find ourselves in. We all suffer, whether physically , emotionally or even relationally.  But GOD... is very present in our daily struggles.....and we are all in this life together. 
Hebrews 12:1-3
“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverancethe race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.”



Journal entry by Debby Larimer

Our family would appreciate your prayers for direction.  There is  a lot going on  with different circumstances. Hard lessons of perseverance. It gets overwhelming, just like any home. Please pray for resolution but also solutions. Lately I am both deeply discouraged, yet deeper down encouraged.  I feel discouraged by the seemingly brick walls I may temporarily sense, but encouraged that God knows the needs, and tangled mess can turn around making my family stronger and straighter, despite the chaos. I may no longer multitask well or juggle life with the same active ‘control’ that my body allowed.  BUT God!  can take all of my weaknesses, and teach me about the strengths I do have. He exercises His omniscient/all knowing-sovereignty, omnipotent power, and the omnipresent comfort for each member of my family, my friends, all....  

I have to rely on these truths tonight.  I don’t feel hope because of the chaos, I have hope inside.  I feel exhausted from the redundancy and mundane job of trying to guide and guard my adult children but I feel guided and guarded by God, when He sends the right person, the right doctor, the phone call, the safety, the next connection.  I have a front~view seat of God’s supply, intervention, healing help so much that my cup overflows, yet my need is great. I’m not wanting to complain in my writing, as much as I want to explain that my life, my days, my nights are a full time job....without even leaving my home. It’s hard, complicated, exhausting but it’s a living_LIFE and it’s full &abundant.  It’s my life, my breathe, my purpose, my identity, my responsibility.  Yet I love how those individuals willing to come close enrich me deeply.  When you reach, and you all do.....you touch me deeply and I get to witness how your simple acts GIVE volumes to my impressionable, tender minded daughters and son. It’s a LOVE so beautiful.  I also get to see and hear and also FEEL the way that “the world and words of others” make it EVEN HARDER to live in this culture. Life can feel very inaccessible when you are trying so very hard to adapt.  Yet I know even even a family looks like a mis~shapened peg trying to fit into the w-hole of life it can beat you down. When there are larger special need lives  x 5, it gets complicated, The parallels with one another help us grow but also prohibit us at times from getting those added choices, social experiences, or even frills in life.... With disabilities (diff-abilities) you can loose sight of dreams, ‘rights’ of passage, and God given desires.  Those needs to serve, love/be loved, contribute, partake, work, take part, travel, to be invited, all get attached to your worthiness in the world.  That is what propels one to go deeper to find the worth that isn’t attached to lies I tell myself, or lies  I believed and that become attached to who I am.  Love, Life, Status can get so twisted and even when I think I sorted some of it out, it can take one innocent comment to drag me down.  

I learned the hard way that sometimes expectations, or trying to control what I can not will only lead to inner conflict or outward conflict. Life is conflicted enough.


Listen to the version of this verse...

“By this we shall know that we are of the truth and reassure our heart before him; for whenever our heart condemns us, God is greater than our heart, and he knows everything.”

1 John 3:19 


I’m trying to sum up a couple of very challenging weeks

Over a week ago, I had surgery. . A brave friend offered to take me me at 4am. Chris surprised us too before work...right as I was ready to go back for the procedure  so she met me in recovery...when I could use the most support.

I was anticipating that I would speak to my urologist/surgeon prior to about my urology concerns as a whole. This is my physician, currently my only urologist, that will still not schedule an office visit.  She related to me that offering this procedures every 6 months is where we are at... She said I’m complex and complicated so I need to consult or seek out a more specialized urologist or sarcoid specialist, but did not give a recommendation. She did point me in the direction of Philadelphia but I need to make sure if I’m able to consult with a new doctor, that it will be worth the trip, travel arrangements and will yield options that could help.  I still have a kidney stone that she did not touch this time but I’m reassured it is not the size of my other k stones that were done surgically in steps with stents because they were very large.  Last weeks surgery was very painful and I was treated with IV antibiotics and I got a new SPCatheter change while under. i have been in a great deal of pain I am trying to tolerate sitting up longer. It was addressed by IV antibiotics and said I would not need further testing.  I know my head I understand that doctors know better medically how to make conclusions etc, but I know what my body is feeling-  So as I write this all the frustration it caused me is resolving me to seek a 2nd opinion or help from an additional urologist, as well as a Sarcoidosis specialist..  I may check with Temple if they participate or consider if Hershey would be part of the network still.. I’m not in a place yet to call but I am certain I need answers..  I am not trekking too far due to my limited resources but I found out Clevland Clinic has an entire Sarcoidosis Center with all the specialties that only treats this rare disease [w/o cure) and after you get connected some physicians do video visits.  Johns Hopkins, Mayo have similar physicians and services working together. 
Following my surgery  I had another shingles outbreak on my right side..  I take daily medication Valtrex to attempt to suppress this over the past number of years and in an attempt to make breakouts less. 
I had an appointment with my headache physician assistant.  This doctor has been attempting since last June to get a monthly injected medication covered by insurance. She will also reconnect me with the M.D that can give me Botox injections in my head. Jokingly, I  want to know why with all the Botox in the different parts of my body why I’m wrinkling up.???
I have known since childhood that I can react to meds that are suppose to make you sleepy that it can reve up my emotions instead.  I was given IV antibiotics at hospital last week and additional pain meds and the combination of this seemed to prove disastrous when I got home.  I was a puddle of tears and I talked non stop everything thought, feeling and rambled every thought for the next 24 hrs and said any trace of emotion left inside me non 🛑 stop ✋. Halt!  Instead of writing privately it, or discerning I talked (cried) non stop.. Now I know another reason why they should limit anesthesia with me.  I must have regretfully shared too honestly and in a shamefilled way I’m still trying to get to the bottom of misunderstandings.
My son has been struggling with more serious concerns.  I see how choices, decisions, impulsivity and naive information lead to some irreversible consequences. Some things can not fixed or redone and have far reaching effects.  Because, I relate to the struggle, I can only extend Gods grace and experientially walk through with him..
Geoff is a trophy in the making.  He is a seeker, an overcomer and step by step he has made so much progress. Paul writes... BUT GOD....
“But God, being rich in mercy, because of His great love with which He loved us, even when we were dead in our transgressions, made us alive together with Christ… so that in the ages to come He might show/ (demonstrate..amp version), the surpassing riches of His grace in kindness toward us in Christ Jesus.” (Ephesians 2:1-7)  
Because of Gods grace.......But by GRACE we can live a life saved from separation. forgiven Although I don’t always understand my children’s behavior or choices, I recognize the war waging within and the energy it takes to manage medical, emotional and impulse control.  
BUT God ..still displays his mercy and grace..and we have exceeding / transcending / surpassing riches..!   He shows how abundantly rich we are through others and experiences  God shows how rich we are with God’s grace. This verse in Ephesians tries to put into words what cannot be fully explained to my human mind, the depth of the riches and the GRACE.. When I understand how God takes my tangled up  shattered life and He chooses to use me or you in circumstances for HIS glory, I gain HOPE and faith. That is something I will marvel at.  When I see someone do something (even unknowingly) to faithfully lead me to a better step, a better life, a better peace, a better choice, I feel rich. Not because I worked hard but because HE is made Glourios in life. 
Jenn has another oral infection. We finally took her to emergency care on Sunday and was on phone again Monday morning. and once again, referrals are sent within the hospital networks, even insurance declaring emergency, still no further, This agony she cries through is quite serious.and she needs your prayers to gave access to the hospital necessary procedure. She needs the care and has needed it for quite sometime. It could be a more serious infection. My son is in same similar place.  Please Lord, open closed doors, open door of doctors.. until then..thank you for learning that takes place while seeking doors that open..
Thank you for following this journey with this family. 
I was reminded of a song below, written back in the 90’s  
I know God is listening. Just God.  It’s just who He is...

WHERE THERE IS FAITH ...by 4Him (1990)

I believe in faithfulness
I believe in giving of myself for someone else
I believe in peace and love
I believe in honesty and trust but it's not enough
For all that I believe may never change the way it is
Unless I believe Jesus lives

[Chorus:]
Where there is faith
There is a voice calling, keep walking
You're not alone in this world
Where there is faith
There is a peace like a child sleeping
Hope everlasting in He who is able to
Bear every Burden, to heal every hurt in my heart
It is a wonderful, powerful place
Where there is faith

There's a man across the sea
Never heard the sound of freedom ring
Only in his dreams
There's a lady dressed in black
In a motorcade of cadillacs
Daddy's not coming back
Our hearts begin to fall
And our stability grows weak
But Jesus meets our needs if we only believe


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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