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.


 


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