Changing seasons, changing gears

As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .

Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .

Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.

Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!

I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.

Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.

The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ

Slow but sure

Whenever my Dad’s mom was facing a setback in her health she had one phrase regarding her progress, “I am getting there, slow but sure.”  She might be in the hospital with an exceedingly painful case of shingles but her response was just the same.  Surely this attitude endeared many of the medical staff to care for her just a little more.  I sure appreciated her more when she reassured me with these words over the phone 300 miles away.

slow but sure, slowly but surely, senior crossing, traffic sign, grandma, grandmother, sign

I have decided to borrow this attitude for myself.  Perhaps it will help with another temporary setback as I recover from a recent biopsy of my thyroid.  My neck hurts!  The procedures and resulting discomfort have triggered more noxious symptoms including those related to hormone fluctuations:  temperature dysregulation, blood sugar swings, occasional tearfulness, etc.  But it had to be done:  my third round of biopsies over the years at least this time was performed under conscious sedation.  Gratefully I did not have to be awake when they pushed that very long needle into my neck.  Eeeeek!

My recovery is coming along, slow but sure.  Today I was able to be upright more hours than yesterday and hopefully I will be able to leave the house tomorrow for an appointment before my infusion of antibiotics in the afternoon.  The latter continue 3x per week as they will very likely for the total of a year of IV ceftriaxone.  We are trusting the Lord to provide for all of this; we have had to pay thousands per month ourselves for most of this year.  With treatment by a naturopath and genetic coach, compounded medications and supplements, and every kind of co-pay there is, we should qualify for a medical tax deduction for the year without any problem!

At least now I am not failing unto death any more.  What good would I be to anyone to allow my health to decline without a fight?  I believe the Lord gave me a brain, five years, and an unusual provision of resources to get this job done so getter done I shall with my beloved Stevers leading the way.  Slowly but surely this train will reach the proverbial “Station*” just in time someday with a little less baggage for having fought the good fight.  And it looks like things may be looking up soon (provided the biopsy results indicate that the thyroid nodules are benign!).  Regardless:  God is good.  All the time.  God is good.

I hope that you know that to be true too, Gentle Reader.  Feel free to tell me about it below . . .

*https://justjuliewrites.com/2013/03/24/the-station-by-robert-j-hastings/