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

Brief treatment update

Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:

Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit!  I finally got word this past week that Dr. N did talk to my LLMD as I had requested.  Still  Dr. N referred me to another chiropractor for more “comprehensive” care.  That did not work out so well.  (See posting from Tuesday!)  I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.

Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning.  Yipes!  Had a better day by the time Sunday came, albeit weak from the previous 2 days.  (Only had one episode that night, on the way home from our Sunday church home group.)  Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein.  What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts.  This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties.  I’m praying that the Lord sustains me and that my tender vessels endure it!   Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment.  I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks.  Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain!  Yes!

Rife or Beam Ray treatments are on hold.  My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.

Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI.  Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments.  “Rest” is my focus at the moment in my weakened state.  I do make dinner most nights, however!

A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis.  IU is the go-to place for persons in the Fort Wayne area needing a special consultation.  So to Indy we will go at 5 in the morning.  Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right?  Gooooo Steeeeeeve!  As for me, well I might still be up from the night before!

Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church.  It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago.  Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!

Well that’s the main stuff or at least the news for the masses.  If you wouldn’t mind praying for us that would be great.  My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina.  I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty.  This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.

Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago.  We have cancelled a trip before but rarely decline local invitations.  Steve just goes to them without me and that is cool with me.  Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip.  So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer.  JR is going to get a big box in the mail real soon!  Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super.  The Lord has helped us and even blessed us.  We are trusting Him and hopeful for all He has in store for us.  (Proverbs 3:5-6)

Take care all,

Just JulieProverbs 3.5-6