Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

Sometimes you just know

13 But when he, the Spirit of truth, comes, he will guide you into all the truth. He will not speak on his own; he will speak only what he hears, and he will tell you what is yet to come. 14 He will glorify me because it is from me that he will receive what he will make known to you.  (John 16)

Jesus spoke these words as he was instructing the disciples about the Holy Spirit they would receive at Pentecost.  These words came hours before He was to be arrested, tried and convicted of crimes He did not commit.  He would be tortured, beaten and crucified in fulfillment of the scriptures that were written hundreds of years before He was born.  All of this happened so we could be saved from the consequences of our sin and live forever with Him in heaven.  For those who believe in Him, He dwells in their hearts, comforted and counseled by the Holy Spirit.  Call it supernatural intuition if you like.  Sometimes you just know something to be true, the right way to go.  For followers of Jesus Christ, walking in the Spirit of truth is a smidgen of heaven on earth:  one’s heart can be at peace at last.

I experienced this today.  A phone consultation with a second physician within a week brought hope.  I felt like my heart was at home in her care.  I was moved to tears when Dr. B. confided in me her faith in the Lord, shared how she had reviewed my records at length in preparation for our appointment, and led me through a plan that incorporated everything that has transpired in the past 2 years.  She has experienced biotoxin illness herself and has worked with the leading authority in the United States on this topic.  Her gentleness calmed my fears.  She listened.  Hey guys:  I am going to get well!

This next phase in my “Hope Beyond Lyme” journey will likely take another year.  The treatment steps will include baby steps such as 1/4 tablets of medication, micro nutrition, retesting at better labs, and plenty of out-of-pocket expenses.  At this point I am trusting the Lord to provide, to guide.  My husband has been a great spiritual leader during this time of illness and I know he will lead us in these next steps as well.  I am so glad I followed his advice not to fly across the country for medical consultations!  We could not have afforded it anyways.  And now the Lord has provided help from a clinic just a 2 1/2 hour car ride away.  Pure Michigan.  I’m going home to my home State for healing!

O.K. I don’t know if everything will be rosy but hey, I have hope again.  Gentle Reader, isn’t that just swell?  :J

They really need to work on their transfer technique!

Sometimes I simply take for granted the skills I have as an occupational therapist, even when this OT is on an extended medical leave.  Allow me to explain  . . .

The writing was on the paneled walls metaphorically today when an appointment for a medical evaluation by a new doctor turned out to be in a water-damaged building (WDB).  I had a bad feeling when I noted the address of his office:  in an older part of town with offices that were probably built at least 25 years ago.  I knew that another building down the street was flooded during a bad storm last year so it seemed possible that this building could be:  1) older, 2) a WDB, and 3) laden with automatic air fresheners to attempt to cover up any residual odors!  What I did not count on was the receptionist/medical assistant wearing perfume as well!

The scent of Dollar Store air freshener greeted me inside the glass doors of the 70’s style concrete medical office.  The scent was even more concentrated in the tiny office of Dr. O.  I had barely finished the new patient paperwork when the neurological symptoms hit.  Oh boy, here we go again!  I looked up and saw water stains on one of the grayscale ceiling tiles; there was at least one water stained tile in each room I entered this afternoon.  The medical assistant received my completed paperwork and took me back to the patient screening room.  No sooner had I stated my usual precautionary mantra of what to do/not to do if in case of “neuromuscular events” before the random fireworks of tic attacks began.

I aced the eye exam and I was pleased.  Steve and I have not had the funds of late to update our eye exams or corrective lenses for the past 2 years so it was good to know that perhaps not much had changed for me.  Conversely, the nature of my Doctor visit was about to change drastically.  The medical assistant (with great purple-striped fingernails) invited me to sit in the exam room and wait for Dr. O.  As soon as she closed the door, my whole world began to rock-n-roll.  Tic then seizure attacks are a real bear sitting up in a chair because of the whiplash effect on one’s neck.  Everything from the spinal column outward stiffens and voluntary movement diminishes the longer and more frequent the attacks continue.  Things were not looking good at all.

Dr. O entered the room and turned out to be true African instead of Indian as I had surmised by the spelling of his name.  He asked, “why are you here?”  I said I was there for a “medical evaluation.”  He asked a couple more brief and concrete questions and my ability to respond quickly degraded as the seizure attacks became entrenched.  Attempts to speak or move exacerbated the involuntary tremors and shaking; to try and tell him this while my face was becoming constricted and torso was pulling forward in a writhing, flexed posture was quite a challenge.  “I need to stop the exam,” he announced rather emotionlessly.  I encouraged him to wait a moment.  He persisted with something about not being able to do his exam with “all this” going on.  Yeah, I knew that but it was better that he said it and not me.

Two things happened next that amazed me.  First and gratefully, the medical assistant and Dr. O realized that they needed to get me outside for some fresh air.  They brought in a wheelchair and asked me to get into it.  I replied that I could not move!  Through extremely strained vocal cords, jaw, and body posturing I indicated that they would have to help me.  The absolutely crazy part was discovering that they had no idea how to transfer a patient from a chair to a wheelchair!  I guess I take basic skills like transfer technique for granted.  It’s taught in 3-week Certified Nursing Assistant training classes and most workshops on back injuries.  And yet there I was, an occupational therapist with 30 years of experience in a completely debilitated state, instructing 2 experienced healthcare professionals how to get me the heck out of that chair so I could get some fresh air.  Eventually they realized they needed to lock the brakes, flip up the footrests, and so on.  I just couldn’t utter all the details that were needed at the time ya know.

The second amazing thing was what happened next.  Once outside and all the way through the ordeal I kept uttering apologies, thanking them for helping me, and trying to regain some type of control over my physical faculties to no avail.  I simply had to wait it out and focus on just breathing.  I let them know the latter.  It was in the mid 90’s F outside and it felt great in the shade!  Fresh air at last!  At least the air was fresher outside than on the inside!  The two healthcare professionals made a plan for what would happen next since they had other patients to see (but I did not see any in the waiting room) and could not leave me outside the building in a wheelchair alone.  The sweet gal with the fingernails called my husband at work and he was now on his way to rescue me, take me home.  However the plan also included transferring me from wheelchair into my truck so I could wait there and not in their wheelchair.  Using the same ersatz technique, they moved me like a sack of potatoes into the elevated seat of the passenger seat of my truck, turned on the ignition and air conditioner, locked and closed the door, then retreated back to their office.  Geez!

I gradually shifted my tender “sack of potatoes” body around to support my wrenched head and neck.  The pain, the fatigue, the grief reaction, the embarrassment, the horror of it all began to sink in.  I could barely move my arms to wipe the tears and snot running down my face.  My central nervous system was still in “tic mode” so any efforts to move flared the remaining shakes.  I wiped my face with my sleeve anyways.  From here I simply had to ride out the rest of the storm until Steve arrived.  Such is the very inconvenient hell of Chronic Inflammatory Response Illness.  On 1 1/2 hours of sleep from the continuous tic attacks the night before and now after surviving a 3-hour ordeal at this ol’ medical office, my beloved found me an graciously took me home.

When I started writing this account of my day today, I intended to tell a really funny aspect of what had happened.  I guess I needed to vent first.  This was a very difficult experience as you might imagine.  Probably the only good thing that will come out of it will be that there is absolutely no way that Doctor can say that this illness is all in my head after what he witnessed today.  I’d experienced a couple of “MDs” lately who tried to suggest that these seizures are psychological.  I was thoroughly disgusted!  I’d have to be a real sicko to imitate over 200 episodes of wretched and painful pre-tics, tic attacks, seizure attacks, and convulsions in a recent 44 day period that I tracked for my medical record.  Who would do that?  The answer:  no one.  I must trust that Dr. O will write what he saw and nothing else.  No “armchair psychiatry” welcome here please!


Funny thing happened on the way back to my truck after a medical appointment today:  I started to notice a host of crazy paradoxes despite my wretched situation that are quite humorous if I just changed my perspective a bit.  Here’s where I’m going with this.  Imagine these headlines for my story today:

Female medical center patient coaches physician and trusty assistant in wheelchair transfer technique to keep them from tangling her feet in the leg rests of the rolling and rickety wheelchair.  It’s a good thing that she’s been working in rehabilitation 30 years, eh?

Compromised patient slumped in non-ambulatory state must get back into her mid-size king cab truck loaded with dirt from a garden dig earlier this Spring.  She’s weak but her 2-ton truck is strong for sure.

Collapsed wifepoo recovers in her air-conditioned vehicle while her maximally machismo husband drives up to rescue her in his Dodge Magnum RT speed machine loaded with a 21-foot racing surf ski on his roof.  The dude looks like he could fly the stud mobile into orbit and launch a Tomahawk missile into space from the heavy duty aluminum racks bracing the sleek white projectile.  When she recovers, she and her co-pilot River Bear will fly shotgun in their 24-foot outrigger canoe on the roof one day soon.  Story at 11.  

Yeah, that’s more like it!  What a way to get a story, eh?