Journal

Journal entry by Debby Larimer

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

Journal entry by Debby Larimer

Message this morning from my PCP.
Debby,
I am aware of your testing. Sorry to hear you weren’t feeling well. Unfortunately, it takes up to 7 days to get results. The results are still not back. For now, you need to continue quarantine. As soon as I see results, I will let you know.
Sincerely,
Sue M, MD

I was tested Friday for the Covid19 at the hospital. I was told to be quarantined at home until I get the results. I need to know when the results come in,because of those who have come in contact with me, my family and home health aids. I also need to know if the virus I do have is resolving as it should. I haven't been this sick in some time. 
I haven't had a fever since Monday night, just low grade (below 100), ..I still have some gland tenderness in neck and back of head. I started with diarrhea Sunday and it's still an issue when I try to eat. Last night I had toast and honey with apple sauce and that triggered it following eating. I still have pain in my face and headache that is sinus related. My voice is coming back. My cough is still very persistent and it hurts to breathe. I spoke to my dr from Palliative care on Monday because she was scheduled to visit but due to the concerns with her caring for other homebound patients with concerns we just touched base on the phone. 
I'm praying for the many physicians and nurses and staff who are at the forefront of helping people understand and heal from all health concerns, but especially during this epidemic.

Friday when my emergency button was pushed I wanted to do the right thing.  Those closest to me, perhaps some of you assured me online and on the phone that I needed to be evaluated. I knew when I opened my eyes Friday morning that I no longer just had a fever and a cold. I was weak and the symptoms were in my chest and I was struggling to move air through my lungs. I think of Paul (in scripture ) often not knowing what precisely what his struggle was,....


“Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:8-10

My body may be presented as weak but He is my strength and I sense him making me stronger in the battles I face...whether physical, environmentally, or the struggles in life.. He remains strong despite any situation that may come my way.

I went to the hospital alone and actually our local hospital is not permitting any visitors to come in to see patients. It was also hard over the weekend here with the care team in my home. I had someone here during the evenings but it was my adult children who helped me when necessary during the day. There is fear in many people but this epidemic is not easy to work around. 

It cannot be easy for anyone to make crucial decisions because even if someone is young and healthier, they may live or come in contact with a loved one that also has a weakened immune system. Even though I don’t know my results, whatever caused the pneumonia, I feel that I am able to stay stable here at home. God provides all I need here.

Last Friday, alone in the hospital, I was hooked up to the heart monitor, pulse ox and an EKG and chest xray, blood tests, strep, flu and finally for the COVID-19. I was asked more about my heart and lung problems and again urged to get in at Hershey with my Sarcoidosis specialist.  I was stuck numerous times by a few nurses and I felt too sick to really mind. I was trying to will my veins to not roll.  They really have been collapsing from over use.
 I have been wheezing quite a bit so I’ve been advised to do breathing treatments 4x a day here at home.  I am tolerating fluids but not food as well.
My BP stayed high only changing a number or so. The dr said it could be all part of the illness. My O2 is up to 4 liters of oxygen until these symptoms resolve to keep my saturation’s above 90 for acute respiratory issues.
God has provided so many ways. I found a way to get back home from a young friend who was bold enough to come to get me. My adult children not only helped me, but have been reassured that “all would be well” no matter what transpires.

These past days the pain in my ribs, head and neck are quite sore. I may not be out of the waters yet, but I feel stable and not losing ground. I am not worried about my results because I feel his presence telling me to just rest. 

Gods word, his faithfulness with promises are pertinent for today. God “shows up” in ways that make His presence known. I know that healing is taking place.. I have questioned God and wondered why God heals some and not others. A story my dear friend from TN reminded me of.. it’s the story of Hezekiah in 2 Kings 20. He became sick and Isaiah was sent by God to inform him he was going to die. 2 Kings 20:1 “This is what the Lord says: Put your house in order, because you are going to die; you will not recover” Hezekiah pled with God to heal him instead of heeding God’s message to prepare, Hezekiah wept and pleaded with God.  God told him that his tears were seen and God added to his life 15 yrs. (2 Kings 20:5,6). But the Scripture tells us that during these 15 years, Hezekiah committed great sin and brought ruin on his house and the land of Israel (2 kings 20:12-19).Hezekiah showed off his wealth to the king of Babylon and that played a part in Babylon later destroying Israel.  He could have accepted the word of God that he would die and it would have spared Israel a lot of heartache.  Also during those years His son Manasseh was born and he was a very evil king, the worst king ever.  Great numbers suffered as a result.  

God knows what is best for us in His sovereignty and love....like a parent tries to do  what is best for their child.

God does not just focus on physical healing or length of our days but it’s the heart health. Samuel 16:7 says, “. . .man looks at the outward appearance, but the Lord looks at the heart.” God knows our desires and we can ask in His name, but he sometimes answers as our Heavenly Father with, yes, no, or wait upon the Lord. My desire to be better, healed, cured or free of struggles may not be in line with God’s all knowing power for my life. He knows our true desires, and what’s best for his children.
Even Paul longed to be with God in heaven. When Paul was first imprisoned, he wrote to the Christians in the city of Philippi. He confessed that he was conflicted over the thought of continuing his life on earth or joining his Lord in heaven. “For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith,” Philippians 1:21-25  I identify with the feeling of desiring to live a long life, possible room for more healing, but I know there is a greater joy in knowing someday, my Lord and Savior will carry me home to my ultimate healing. Earthly life is what is term-inal (Emily said it’s just a term in all when we talked about this word) Our new life here on earth and then in Christ is where He becomes our all in all. Absent from this body and present with the Lord. 2 cor. 5:8
The Israelites in Exodus 16, tell the story of the manna that God was faithfully providing but they grumbled and craved meat.  They thought they knew better. So God gave them quail and then they were glutens and many ended up dying as a result.  I think I can identify this with how God gives us what we need, or the discernment to take and expect what we truly need, rather than buying or storing up more than we need. It’s relevant. 
In these troubling days we can find powerful lessons about faith. The assurance for me comes in knowing that God’s timing is best. I don’t need to chase after a cure, or the right church, speaker or person, unless God prompts me to action. For example there is a lot of information circulating around the world as we are home during this crisis right now, but not all of it is accurate or not every home remedy comes from reliable sources. We can glean what is appropriate for our situation but we ultimately rely on God to work in and through this situation, even if we are affected. Faith and trusting can overcome our fears. He teaches me and you to take refuge, shield me from harm, and protection over us. When I’m all alone, or discouraged, I turn to the Psalms. When harsh reality is before me, I think of the gentle shepherd.. Psalm 23 is not about our departure as much as it reminds us “The Lord is my shepherd, I shall not want..” During this time of worldwide concern He provides...we are ok., all is well right now.  “He makes me lie down in green pastures; He leads me beside still waters; He restores my soul. He leads me in right paths for His name’s sake. Even though I walk through the darkest valley, I fear no evil”,...  He is with us. This is a Psalm of comfort to me. I have a precious friend named Grace that used to say this with me every night over the phone until I said it on my own. 
 Aren’t the scriptures there to reflect the honest experiences of those who have learned to live in interaction with God? They are present and precious to me. He is my living hope
Psalm 91, & 92 have been ringing true to me over the years and seem pertinent for today.  Others have validated that this is true for them as well right now. In this scripture I learned that the word pestilence is used over 80xs in the old and New Testaments ,If you look this word up (or ask Alexa) it means epidemic or deadly epidemic. We don’t use “pestilence” in our everyday conversations but it means something to us today.  In Psalm 91 it’s in there more than once, but it talks of God’s provision, protection and care. It occurred to me that the first verse is 91:1(911). It uses these words to tell me I do not need to fear....the words rescue, protect, answer (in times of trouble), deliver, satisfy, long life and show me my salvation.  Isn’t that awesome?  Psalm 92 goes on to PRAISE God...proclaiming His love in the morning and faithfulness at night.  This is a good practice during these conflicting times.
”Fear not for I am with you., be not dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10. This is a faith over fear verse as well. I noted, His righteous right hand in my Bible. Throughout scripture it calls God, a Just God. He isn’t punishing us, because we make choices with our free will.  perhaps we need to be stepping back and saying, Look at the sin in this world. It started with one person, just like this Corona disease has multiplied around the world but most likely started with one case.  God is in control, aware and cares. I have been seeking to understand these questions and searching too, but believing by faith what God is saying to me...Do what is good and well pleasing. God's plan and purpose for each and every believer is for His good, and for His glory (like in Romans 8:28).This includes all the suffering and tragedy that comes to us in life. Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done....” God is compassionate and our struggles can teach our Spirit to exercise co-passion with others (see 2 Corinthians 1:3-7; and again 12:7-10). His perfect will takes into account our ignorance, our weakness, or sins, illnesses, even sins of others against us. ....to be searching more inwardly....Romans 12:2 “Do not be conformed to this present world, but be transformed by the renewing of your mind, so that you may test and approve what is the will of God”

Right now with this epidemic I feel He created the entire world but not our messes, not the choices. He came to earth to seek and to save,  We can pray ,’God heal our land’, but interdependently we need to work on healing our hearts and trickling down Gods love and kindness to others to make a ripple effect for God’s glory. He also knows that through adversity, our weaknesses, even our physical struggles that we learn to depend on him through the journey we are on. In his infinite wisdom He knows the choices of all people. He is not condemning our actions, He gives us  merciful strength to endure and wants me and you to correct our ways, if need be.  Psalm 46:1-3  “God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” and then at the end of the chapter verses 46:10, 11....He says, “Be still, and know that I am God.  I will be exalted among the nations  I will be exalted in the earth.” The Lord Almighty is with us  the God of Jacob is our fortress.”  But I don’t think He tolerates those who are leading this country astray and substituting God for self....wanting our own way. Sin has a rippling affect on each of our life. Every disease has a starting point, every virus, every lie, every anger word, We are all short of the glory of God that’s why we needed a Savior. . When I worked with children I would place a rope or piece of tape on the ground and ask them to try to jump from where they were standing at one mark to my mark or target. When they would miss the mark, I explained that no matter how good we try to be, how well we dress, how well we eat, or grades we get we will fall short. “For all have sinned, and come short of the glory of God” Romans 3:23

(BUT GOD) then says in next verse Romans 3:24.... “and all are justified freely by his grace through the redemption that came by Christ Jesus.” Jesus made a way on the cross so we won’t be separated from Him, but spend eternity with Him. So life will end in V for victory.

Why am I preaching to the choir ...myself because I am sick, and not yet healed but God is still showering me with His grace and mercy -down on me. I did not choose this body, I may have not always honored it, but God has propelled me further healing than any of my doctors imagined. He chooses to restore my strength, it really is a gift. God has whispered  to my heart to focus on this moment, be grateful, I need to do what you I know is right and follow him. He gets all the glory whether I improve or not. Romans 14:8 “For whether we live, we live unto the Lord; and whether we die, we die unto the Lord: whether we live therefore, or die, we are the Lord's.”
1 Peter 5:6 “Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.”  This is assurance, this is submitting to His plan
I’m so grateful for those in the health care system, for all the deeply caring and healing work done, for the selflessness, compassion even in the worst of circumstances.
I’ll end here. Thanks for listening to what I’m learning. Thank you for your prayers. KNow I care for you.
I pray for your protection and please share anything you might want to add or if we can learn together. I pray God will clear up any spirit of confusion in these words.
I recently joined a free Bible social media group that has many different study options from a variety of authors and topics, even children and youth topics. You can also pray for others and interact.  Go to Bible.com  (YouVersion) https://my.bible.com/

Two songs that keep replaying in my mind
In Christ Alone
In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.
In Christ alone! - who took on flesh,
Fullness of God in helpless babe.
This gift of love and righteousness,
Scorned by the ones He came to save
Till on that cross as Jesus died,
The wrath of God was satisfied 
For every sin on Him was laid
Here in the death of Christ I live.
There in the ground His body lay,
Light of the world by darkness slain:
Then bursting forth in glorious day
Up from the grave He rose again
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine 
Bought with the precious blood of Christ
No guilt in life, no fear in death,
This is the power of Christ in me
From life's first cry to final breath,
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home
Here in the power of Christ I'll stand.


Heal Our Land by Micheal Card (National Day of Prayer)
Forgive oh Lord and heal our land
And give us eyes to seek Your face and hearts to understand
That You alone make all things new
And the blessings of the land we love are really gifts from You
If My people will humbly pray and seek My face and turn away
From all their wicked ways
Then I will hear them and move My hand
And freely then will I forgive and I will heal their land
Unite our hearts in one accord
And make us hungry for Your peace and burdened for the poor
And grant us hope that we might see
The future for the land we love our life our liberty
If My people will humbly pray and seek My face and turn away
From all their wicked ways
Then I will hear them and move My hand
And freely then will I forgive and I will heal their land
If My people will humbly pray and seek My face and turn away
From all their wicked ways
Then I will hear them and move My hand
And freely then will I forgive and I will heal their land
And I will heal their land
Heal their land
Heal their land
Heal their land
Heal their land
Heal their land

Journal entry by Debby Larimer

Since Friday, I have been I struggling with a variety of symptoms. My fever has returned tonight. My glands are enlarged front and back. I have not been sick like this in a long time. My cough sounds croupy like a seal. I’ve lost my voice and when I tried to talk I had episodes today that made me dizzy. I’m wheezing quite a bit so I’m trying to keep on top of treatments and inhalers. Early this morning I started having diarrhea and it continued into this evening. My muscles are very sore and my glands are tender. I have pain in my face and in my gums, thought to be from sinus pressure, ear pain or my glands. I do not have results from some of my testing so I am remaining in my room area. I’m drinking Powerade and I tried some rice.  On this emergency day of prayer, I want to pray for the world’s need for healing, harmony and renewed health. Pray for those in the medical field and those making crucial decisions..
I’m so grateful for those in the health care system, for all the deeply caring and healing work done, for the selflessness, compassion even in the worst of circumstances.
I join you in prayer for the circumstances this epidemic is creating.

Journal entry by Debby Larimer

I’m very glad I came for treatment. The wheezy, cough and chest pain, sob etc was evaluated.  They tested me and believe I have viral pneumonia as a result of my Sarcoid hopefully.  bacteria blood tests ruled Out that kind of infection.  Because they tested me and I have symptoms of corona (but none  reported cases in LHV))  putting me on Quarentine at home because patients like me have access to care at home.  Already in place ..Even if I tested positive to this Coronavirus I would still be kept in my home under quarentine if I remain stable.  Nurses or caregivers can come to me.  They are only bringing in the critical cases into the hospital .  The quarentine could be up to 14 days in my home or more. They increased my O2 and will watch if bp comes down but they are making me stable for transport home. My caregivers will uses same precautions they use here in a hospital quarentine but I will be isolated unless I have a need. If I need to be brought back in because my lungs or I become any more compromised (hopefully not) then I will be returned.  I need to wear the mask as well if in contact with my care givers.  Pray for protection over my status and over those who work in this field of caring for others.  The H staff was very caring and managed things well.
Thank you for praying.. I’m still very uncomfortable but look forward to my bed etc.  

Journal entry by Debby Larimer

When I came home Monday Emily had swollen glands and sore throat and then then Britt had similar symptoms. They were evaluated, swabbed and dabbed and Emily is on antibiotics for an ear infection but thought to be viral. They are turning the corner, 
Last night Geoff and I got hit with similar symptoms.  My vertigo like symptoms of dizziness and difficulty with movement and tingling sensations in my head and ear are more intense. I have a nagging cough, wheezy and raw sore throat. Geoff was up early morning with gagging and the start of it. Symptoms came so suddenly. I’m running a fever but the others did not but perhaps because I have some chest cold like symptoms. 
Jenn so far is the only one not affected. 4/5 is not so good. 
Pray it can turn around and that no one else is affected if we came in contact with.  Pray for discernment on what needs to be done for restoration and healing. It’s hard to know what symptoms may need to be addressed, but I’m hopeful it will just run it’s course here.
Thanks for your care and prayer.

Journal entry by Debby Larimer

When I read Ephesians 3:20-21 recently and saw the following words.. He is ABLE to do more, immeasurably MORE in my life and in the lives of my adult children...in each one of our lives...yours and mine. Reading this verse placed a newfound emphasis on God’s power and I am believing with faith that He can do more as I believe.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever!”
When I came across these words it reinforced that our Big God will continue work in my life.
I emphasize that He will do it and I can acknowledge and be grateful.

I Thes 5:23,24 also reminds me that “He will do it”.  “May God himself, the God of peace, sanctify you through and through. May your whole spirit, soul and body be kept blameless at the coming of our Lord Jesus Christ. The one who calls you is faithful, and he will do it.”

He wants to do more. I build on this, because I do question God and give way to doubt. I do get anxious or allow concerns to drive, with the gas petal to the floor, into the unknown.  I just want to allow God to lead, to drive, to do more.

Yesterday I had two appointments, morning & afternoon. The first was with my PCP and I went feeling confident that the doctor would see change. We discussed basic check up points and I hestitated to discuss some symptoms that I attributed to my lungs or for the category of thinking, “I brought this up before, so no need to be concerned” I also knew I would see my pulmonologist in the afternoon and I would be getting some basic testing that would be a better way to address it with the pulmonary appt.  My PCP discussed protecting the compromising of my immune system and some things to avoid for the time being. My enlarged spleen was discussed and the need to address this because it’s related to Sarcoidosis. My recent bloodwork has some areas that are better but also puzzling areas that need to be further explored. I continue to experience flares or exacerbations that take me back and then I work hard to move forward or away from this place.  I am happy to be more stable, but. everyday this body of mine is very unpredictable so for me its hard to plan what I will be able to do or accomplish.  My goal is “more” but I can only embrace or manage with what there is to offer each morning, noon or night.  This particular doctor has become more like a friend and after she did her assessment of me we discussed a mutual ministry that is on both of our hearts....A special needs ministry called Rejoicing Spirits that meets at her church nearby. My adult children attend and they are open to me helping. This time the doctor mentioned that she wants me to share my story because from her perspective following my care its been miraculous.  *Sigh* to God be all glory. I then retrieved my bloodwork scripts and left there directing my thoughts to the rest of my day....

It was a beautiful sunny day.  I always enjoy talking with the friends that give me rides so this is a special time to and from. . I came home after my 8 o’clock appt and made a few phone calls, addressed some of the mundane everyday topics and updated schedules with my family.  I tried to rest and catch my breath.

I then set out in another friends car in the direction of the hospital network campus. I arrived early, had my testing and had confidence that my pulmonologist would see some of the stability from my physical efforts with the physical, occupational and respiratory therapies and the routine that seems to in place.  

As I met with the lung doctor he had some general questions initially. I then described some bothersome symptoms and a new one in the past week, the doctor asked questions that seemed routine, but then told me that the test done before my visit did not show the results he was anticipating in the past 6mos. He had concerns with my thoracic muscles including my heart and questioned me repeatedly about my past stress test (the one that the cardiologist sent me to ER and nothing was really resolved) . I explained that I had quite extensive cardiac testing as an out patient last year but no follow up given in this department because I assumed there was no need.  I’ve been trying to work with the symptoms and accept them as more chronic and assume all is well.. This doctor was focused more on the condition of the muscles in my chest and how my activity and strengthening has not changed the condition in my core, in comparison to the rest of my body.  He discussed some of these concerns with a fellow dr and ordered some tests to be completed this month.  He then wants me to return when the referrals are completed. He told me that he would contact cardiology and if this dept does not decide to test further, then he said he may need to talk to my upcoming Sarcoid specialist at Hershey and see if my appointment can be expedited (I’m not scheduled until next Fall because of their availability). The rheumatologist at Hershey is the dr that diagnosed me.

In the past my related heart problems and the congestive heart failures seemed to stem from poor ventilation of the lungs in connection with the heart and the systemic nature of this illness. The problem is there is no procedure to go in and fix the diaphragm or the muscles related to breathing, except using continued supplemental use of oxygen and bipap used together. Because I have a history of chronic respiratory distress, I use the Bipap with O2 delivered on two prescribed defined levels hence the word Bi. in pap. 

My doctor yesterday wants me to continue to use the same settings and continue Oxygen therapy at 3 liters 24/7 and the daily inhalers. I was longing for the day to have one of those little boxed battery operated compressors so I could have less baggage but the tanks remain in effect. Those fancy little boxed machines require you to sniff to activate the O2, and you use your diaphragm to pull it in. I still require the direct oxygen flowing. Right now my concerns are not connected to asthma-like symptoms, but instead the core muscles in the diaphragm do not bring in fresh O2, even when I’m more active so my lungs are affected and build up carbon dioxide. Then around my lungs have a paralyzing effect and does not help those vitals organ.. This one reason why I can only push so far before I have troubling symptoms that stop my activity. At night my lungs hypo(very low respirations)-ventilate. Therefore when I try to awaken, sometimes I experience episodes of varying levels of a paralyzing feeling through out my body. It doesn’t show up on my brain but at the nerve root of my spine. This has been going on for the past number of years, since I have lived here and struggle with more neuro symptoms. When this first happened, I was a patient at Hershey, My veins collapsed and things began to shut down. It was terrifying that first time. I could hear the nurses and doctors calling for a crash cart to accompany me as they raced me to CAT scan. Then they began to see my vitals return while I was laying in the scanner. After that they watched me more closely when I would sleep but moreso when awakening. When I wake up and begin to try to move it can pop up or my speech or motor skills can be impacted.  I learned to work through many of these episodes and know when I should seek care. Initially I could use just bipap at night and O2 by day. Now the o2 goes through the machine at night so I do not get a break from. Oxygen.  This makes traveling hard and I can’t go away for more than a day or think of a flight anywhere. I have used bi pap when awake as well in the day when my lungs tire or need help. Sometimes the oxygen is turned up or a nebuluzer treatment can help open things up if I’m not quite right and I’m waiting for an episode to pass. On more rare occasions I’ve been unconscious or lost consciousness temporarily. The body is very complex. These episodes have been returning more in past months. I was taken by ambulance in December because it came on later in the morning I will accept that it has kept me stable and just try to take it in stride.

The tests the dr ordered are not invasive so a bit more prodding and poking into the unanswered questions. BUT GOD is ABLE to do immeasurably MORE then I could ever imagine. He has already. I have been in a sort of a spectators seat watching how God has worked and how he has broken through the mystery of some of that unknown, not just in my life but Jennifer as a baby and then Emily and with Britt and Geoff. These initially were like wonder years, but I was wounded in Spirit. Broken and lost. Of course we rejoice when we see God’s hand in those around us, but when it becomes to those closest to our heart, I think the wrestling is more personal so when God answers it increases your faith. I think we all hope life will grow more grander, get easier or we will have less to overcome, but I had to adjust my thinking to understand that life becomes better and better not because of your health, your lifestyle or the people with you, but because God and God alone becomes more real and personal, It becomes clearer and more beautiful when you see it through His perspective. 

Over these past 13+ years I have become tired and weary of treatments, nursing facilities, rehabs and hospitals from this perspective. Its hard to say that any hospital stay is good when you feel displaced but you learn from it. I also have been educated with what to do for my body, what not to do, what I will not try again, and how to research treatments, medications and what’s the risks are of more invasive tests and procedures etc. I know I have approached it with more informed decisions as I age through this.  In the beginning I just did what the dr suggested, but sometimes the adverse outweighed the benifit. Everyone is so unique.  I just share this because if and when you or I need treatment, we do our doctors a service when we make educated decisions. They can do their job better. When we seek God’s wise discernment, we can see His hand in our care guiding us. Looking back in history, Did you know George Washington died after physicians drained several pints of blood from his body in hopes of curing a sore throat infection? The prescribed or presumed remedy sometimes is a downfall rather than the recovery. They had limited knowledge. We learn from our pockets of healing or recovery and so does the medical field.  They ‘practice’ and we learn to be a ‘patient’ patient.

On a side note, I have been doing some Ancestry and the illnesses that generations before us died of had strange names and their were no treatments for common things our relatives and friends all overcome today.  Praise God.

There is Hope for any diagnosis.  Like the verse that I’m holding onto about our God who will do more I can imagine. I need to really embrace this so I know how to pray and develop this mindset.

The Great Physician, Jehovah Ralpha is ‘The God who is able to restore, to heal.’ Every ailment returns or yields to His undeniable power and He provides forgiveness (redemption) for sin.  There is power in the blood from the Great Physician! God has provided for this so through Jesus Christ we RISE above the circumstance or illness that comes our way. We win-win whether great healing or a solution comes here on earth, or in heaven. This is evidence of the one and only true healer. 

”Heal me, O Lord, and I shall be healed; save me, and I shall be saved, for you are my praise.” Jeremiah17:14

Now I have some prayer requests

Jennifer was able to begin getting the work done on her mouth. One side is completed and the other side of extractions will be completed at the end of the month. She will then go into the phase of getting her partials. She still has some pain but there is much relief knowing she is able to get the work done, by someone with 30 yrs experience with muscular dystrophy and not deal with the infections. In the meantime, we continue to try to see if her weight will increase.  She has been working with a nutritionist, doctors and a counselor. She has been good with drinking the highest calorie Boosts, homemade shakes and eating 5 smaller meals each day but she has not been able to get even close to the doctor’s target weight. In the past she struggled to keep up a higher calorie routine, but she is doing the work now and her intake is much better. This week she will meet with the neurology department PA to explore if she has lost any muscle or if the loss has any bearing on her health at this point. Pray also that across the board the hygiene would become a focal point. She does so well at her job and this gives her much satisfaction. She had her bowling league party last night and is attending a new friends party this week..
Geoff has been able to wear his night time Bipap machine for the past few weeks consistently. He still has struggles with daytime sleepiness but it will take some time for this to help his apnea. The newest concern has been his balance and increased stumbling. The appointment at the MDA clinic this summer can not come any sooner. I’m grateful for the love, support and direction others give him as a man. His mom’s voice (and Alexa’s reminders) do not compute as well. I need other creative ways to bolster his confidence and guide him toward better self care.   Geoff has been on a waiting list since his H.S. graduation for support services and because he does not have behavior issues, like perhaps others on the waitlist in the community, he has not been prioritized in these programs. He has a few organizations and programs of his side helping to navigate. For now he wants these service in his home. He struggles with not just physical health, but concerns that are hard for me alone, or his therapist, drs or job coach to address.  Pray that in the right time, he will get the added support. A male is preferred but many individuals in this field tend to be female. A part of his weekly support will end next month. 
Britt just got her passport in the mail, so she will be ready for a mission’s trip in the future.  Maybe after these virus concerns lift. She is exploring taking a community college course.+ if not in fall 2020, then perhaps the following Spring. She enjoys her job and I think her esteem is growing as she works hard.
Both Emily and Brittany have had bad sore throats (tested neg for strep today). Emily started antibiotics today for a painful ear infection. A friend recommended and provided coldeeze to help or reduce symptoms for them both. Britt feels much better tonight. Pray that they will improve and that no one else will be affected. We are all reinforcing hand washing, elbow touching and hand sanitizer.
Emily is still looking for a job, pray for the right placement and for direction. She has exhausted local or walking distance locations, as far as we can tell. I see growth in each of our family members, but Emily recently has been “expanding her territory” by getting out into the community and surrounding areas using her bike. She rode to Emmaus twice to do her banking. She has helped the past few months with baking for morning worship. She has also been busy painting and crafting.  She created a name for the collection of her paintings she gives or sells. She named it God’s Artistic Poeima (on FB). She has reached out to others that have similar interests and is gathering ways to learn and to grow this desire. 
We have a large off set garage that sits at the back of our property.. It has a studio in the front from a previous owner that had a small business OT there and a lot of storage space. Emily could use the front part to do art. Our garage even has its own electric bill. In the past 10 years the roof deteriorated on one side and just recently collapsed from my neglect.  Fortunately we found an honest and reliable roofer who did an outstanding job repairing and replacing shingles etc.  When we complete the clean up inside where the roof was leaking, we have some ideas how we can use it.  I’m beginning to get a handle on how to be a better home owner both inside and out, step by step.
It seems we have a full schedule of medical appointments this month. Pray for direction and understandable results.... to do our “load  management” by pacing things. 
With our feelings and life circumstances, Fred Rogers said, “Anything that's human is mentionable, and anything that is mentionable can be more manageable.” When we know what we are dealing with, then we manage better. When I write I find this true.
 I’m so grateful that there are options also now for transportation.  Geoff is independently navigating the Lanta Van with success. I found an alternative way of traveling to Hershey so this lightens our load in ways that we can manage and have options. It relieves my mind when we do not have to rely so heavily on friends.
Last weekend we had a young kindergarten friend over and we played and cared for him for an afternoon. This brightened our day. It’s nice to play a part, even if it’s a small part to feel a part of others lives.  
I’m thankful I can take time to unravel some of my thoughts here.  I may not speak of topics that interest others, but it has become my story, and His story and somehow we all meet somewhere in the journey experientially. 
I am so glad that new connections are being made not only here online, but I am sensing how my “territory” is expanding as I look forward to being out.
“Jabez cried out to the God of Israel, "Oh, that you would bless me and enlarge my territory! Let your hand be with me, and keep me from harm so that I will be free from pain." And God granted his request.” 1 Chronicles 4:10
My hope and prayer is that God will do more, as the world chaos fades into the background...it will become less as God becomes more,  I traveled in the desert of disbelief and despair and swam the red sea of my deepest fears.  God help us look forward and let you lead. Even if days take us deeper . He is able, He will do it.


 


Journal entry by Debby Larimer

was writing my thoughts over the weekend and then WOW, I had the opportunity to get to church yesterday and I was blessed even more. It was nice to get out on a beautiful sunny Sunday, with a hint of Spring in the air with clear skies. We had a guest speaker who was at our church once before. He was one of the original New Boys.  He is from Australia and shared funny, yet captivating thoughts that challenged me and inspired me. I really felt uplifted and encouraged by being in attendance.  I am making my way back into the rooms of my home with the suggestions and help of my therapy, and learning the best ways to work with my strengths.  It is so beautiful to be part of the moment by moment miracles of restoration. Each activity I get through, whether Im finishing a task or just participating gives me a hungry and hope for more. The evidence that I can take on better and more satisfying activities within my home or out in the community helps my confidence. The window of possibilities, with a capital P, is opening.  

Saturday morning, Chris took Emily and I to a mutual friends and stylist’s hair studio.  I got my long hair cut and shaped. Emily got a streak of purple in her hair for Sarcoidosis awareness. This appointment was something we were trying to arrange since before the holidays but beacause I was having more ups and downs it got postponed.  Yet, All things worked together and I got the full salon experience and it could not have gone better. I have been really limited on the places I’m able to go for years. Getting into another home is usually a challenge but we found a way to get into her salon. Even though I’m so hungry to experience more outings, my body reminds me to do it in smaller doses and provide rest and renewal times to pace and rebuild some muscle. Some pain I struggle past, some I can not but I’m gaining more perspective of when I can continue my course with it, or when I need to halt, wait or push.  I feel like I get to do what my central nervous system will allow. I am in a better place right now. 
I have a few appointments coming up next month. I’m eager to see what my care team has to say.
I am thinking of this verse within my soul I feel like I’m dancing as I “rise up” in Spirit.
Song of Solomon 2:11-13(NLT) “Look the winter is past, the rains are over and gone. The flowers are springing up, the season of singing birds has come and the cooing of turtledoves fills the air. The fig trees are forming young fruit, and the fragrant grapevines are blossoming. Rise up, my darling,.....” 
Rise Up, you can Do your best, God will do the rest.
I have begun to recognize that my family needs more confidence at a very tender level, I am 
 praying harder to challenge them and myself to build each one up according that need so we can work on unique significance.  Sometimes I have assumed that they know that they have purpose, worth and the appreciation for their abilities God has given them. But Life beats down hard on us from the time we are born....... One daughter summed it up wisely. She helped me see how life can be just like a puzzle. All the puzzle pieces are all there. Some are harder to put together or find but as you do the searching (or hard work) it begins to come together. I witness how a loving Heavenly Father uses the seeking, searching, and questions along the journey to prepare or equip us.  He does the work with us. He knows the completed and full picture.  He never condemns us for the times we try to fit things together that are incorrect, but wants us to come to His instruction book for life to learn to be a follower. Just like a parent He doesn’t want to force his help or lessons on us. He strengthens our abilities and raises us up in our Spirit. He knows that there is work involved and understands the true desires of our hearts.  God desires that we seek and find relationship in with and withHim..  
The health of my body, my muscles, organs, and  breath in my lungs does not define me, but it is a part of my story, my puzzle and my experiential knowledge. 
God’s healing, miracles and strength that do not always  manifest in my physical body, are teaching me I’m ok right where I’m at. I can strive for more, but Gods wholeness and healing , my life is my contentment right here.
When I spoke to John James (Australian speaker at church on Sunday) he reminded me of my significance in this community is to serve (GIVE BACK) right where I am, right now in whatever capacity.  I can have the assurance that I too am enough. I sometimes hope that others can better understand that you can be challenged, have limitations or have a body with faulty organs or struggles and still be whole.  This also helps me take a grateful peek back and see what I am thankful  for and how faithful  God is.
I see how God is granting many desires of my heart.....to live and heal, to be a part rather than set a part. He is glorified with any stage or page in this journey through my life. There really is a joy in the journey the further a long I get. Lord give me this attitude in tough times and in strength.
I need that absolute surrendering, to give the handlebars to God, relinquishing my plans, my directions for God to show me the straight path he wants me on. My miracles are when I see God move in areas I never imagined. He gave me a “new” heart and new eyes to see his healing now in a fresh new way, putting aside more of the uncertainty. When we seek Him, the healing starts within.  I can not orchestrate the way He can. I don’t have it together, He is putting me [mylife ) together with the truth that comes into sight. All the kernels of truth that the Spirit shows us day to day begin to unfold and fill us with truth that dispel lies we believe from life. He knows when I stumble and reminds me of my need and desire for Him. There is no depth or height that can separate our relationship with God.  Preaching to my heart to bring clarity and understanding to my thoughts.
 Having the strength to join my family and others at church was such a gift.  As I was mingling afterwards, a friend that had moved with her family years ago was there at church yesterday. She had done a short story behind a camera when Hershey had placed me on Hospice. I remember all the conflicting and restless feelings I had just 5 years ago. My pastor at the time told me that I could rest in the fact that “if and when” I would be ready for the Heavenly home, God would give me the peace. I remember resigning at that point to get through each hour, each day with the breath in my lungs and the tools he created in me. It will always be His defining glory I am striving for.  I had to resolve that God loved my children, my loved ones more than I could or even imagine.. I had to accept He does care for my family and He will be the director of the path, I take comfort in knowing God is in control and I can only respond to His truth, I’m sometimes blessed in a process, but He gets the glory.  
Why does God allow all of our struggles, whether physical, mentally, spiritually?  He is glorified. (I find this both comforting and confusing but sovereignty is not something the human mind wraps around.  It doesnt feel light and momentary during our pain, yet we know God will make us completely whole in our heavenly home. It’s hard to be patient in suffering, when you are waiting, hoping and believing. I have to trust that a life of disability with Jesus is infinitely better than a healthy body without Him.

“this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” 2 Cor 4:17

Patient in suffering. James 5:7-12
.”Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains. You too, be patient and stand firm, because the Lord’s coming is near. Don’t grumble against one another, brothers and sisters, or you will be judged. The Judge is standing at the door! Brothers and sisters, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.”

 Now I want to rejoice that I can be present to witness Gods masterpiece in each of my adult children. I know God has healed them and will continue to extend His mercies!
Emily had an encouraging weekend. She has sold some of her paintings. This encouragement lifted her spirit. She reminded me that it is God working through her and the joy it brings her. We made a page and calls her collective art...God’s Artisic Poiema (Greek for masterpiece or handiwork). Yesterday she rode her bike to Emmaus to go to the bank. The simple success of this really encouraged her. She expanded her territory
Geoff had his additional sleep test this past week and they equipped him with his bi pap machine. The adjustment has been going OK. The first night was a bit of a struggle for him to get used to it, but he is tackling it well. I hope he notices a difference. He has a good attitude. He is looking right now for a new men’s fellowship and support group to participate in.
Britt is looking into classes at the community and has gone through some of the steps. Maybe next Fall. She would love to pursue being a librarian. She has done well as a worker and I’m excited to see what God has in store. She is still interested in the missionary trip.  A friend took her to Kutztown to complete the passport process. 
Jenn is learning some valuable lessons and her growth and strong determination is something I have been blessed to watch for about 28 years of her life.  She will get some of her extractions started this upcoming week. She is making it through crazy, unnerving pain with a schedule on otc pain meds that were suggested. She began this quest for dental help in late summer last year.  She met this new oral surgeon around Christmas and it was postponed once due to a surgeons illness.  She will probably wear her crown from Night to Shine to her surgery, because she still wears it as a reminder of being part of this evening. w
God thank you for rewriting my history, with His story. Use me, guide me with your grace. Take my questions, any confusion lies from experiences and heal me according to your timetable. I want more of you and much less of me and my insecurities.  God clear my thoughts and grant me rest. Give me the strength for tomorrow.

Thank you, my friends for the co-passion and compassion you extend to me on this journey 

These songs below have been so helpful to me lately.

O For a Thousand Tongues To Sing 
By Charles Wesley
 7th verses 

. O For a thousand tongues to sing 
My dear Redeemer's praise! 
The glories of my God and King, 
The triumphs of His grace!

8th

My gracious Master and my God, 
Assist me to proclaim, 
To spread through all the world abroad
The honors of Thy name.


Great Are You Lord
You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord
It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only
you give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord
It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only
It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only
And all the earth will shout Your praise
Our hearts will cry, these bones will sing
Great are You, Lord
And dll the earth will shout Your praise
Our hearts will cry, these bones will sing
Great are You, Lord
And all the earth will shout Your praise
Our hearts will cry, these bones will sing
Great are You, Lord
It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise
To You only
It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise
To You only
Source: LyricFind
Songwriters: David Leonard / Jason Ingram / Leslie Jordan
Great Are You Lord lyrics © Essential Music Publishing, Capitol Christian Music Group



Journal entry by Debby Larimer

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

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

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

Journal entry by Debby Larimer

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

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

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

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

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



Journal entry by Debby Larimer

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

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

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

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

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



Journal entry by Debby Larimer

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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