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

The times of the day

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life.  A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics.  Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine.  The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation).  This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies.  The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well.  A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos!  Perhaps the mental health issues came first?  Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues?  It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context.  And not this personally.  I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post!  Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function:                   10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely:  talking to Jesus!

Medical appointments and treatments:                   3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment.  “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils.  (For the past month I have had an average of 7 medical appointments per week!  Eeeek!)

Food and nutrition                                                              3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning                                                     1.5 hours per day

Online medical research dominates my thirst for both information and recovery.  I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization                                                                          2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day!  Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure!  Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything:  Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc.  For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook!  Many people have left my life . . .  Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities                                                  1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities                                           1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity                                                                  .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening.  This figure is divided by the total over 7 days:  lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care                                                                                   .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes.  It feels good.

Recreational and Creative Endeavors                          .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease.  Until now there hasn’t been much fun:  sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters.  I sold my jewelry business last Fall and my creative juices stopped as the illness got worse.  Maybe this summer I will actually be able to work in the public garden for which I have volunteered?  Stay tuned!  Things are looking up!  This past week I was able to work in our own garden for 3 hours:  a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle.  Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time.  Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible.  As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment.  Volunteer work perhaps at our local Extension Office may also increase.  Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

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I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness.  I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

Overall, can you hear the hope in my voice, Gentle Reader?  Yup.  Lord willing, I am getting well!  JJ

Torture, water-boarding and more: Part 2

This story began in Part 1 with how I landed at The Balance Center on the last day of the year for the conclusion of my hearing and vestibular system testing.  That was yesterday and I am still recovering . . .

My mood was in a major funk as I was running late for my appointment (struggling to function), trying to hold off any tic attacks whilst still getting ready and out the door.  I am back into a 2-part fractionated sleep schedule to try and manage:  1) an increase in the nightly and morning convulsive episodes and 2) getting enough sleep.  Usually there are at least 2 nights when the number of hours of unconsciousness barely exceeds FOUR; the night before the appointment was one of them!  Eeee gads.  But by the grace of God have I survived to tell the story so let us continue!

A very sweet technician named “M” was assigned to walk me through the procedures to be performed in three rooms, each equipped with various test equipment, computers, and some funny-looking masks.  I’ll include some stock photos here to bring you into my world:

The Balance Center, vestibular, training, testing, dizziness, therapy, light-headed, physical therapy, rehabilitation, audiology, mask

Generally each part of each test was completed three times.  Most of the time “M” warned me about the challenge that was about to happen (except for the water-boarding shock that came later, unfortunately!).  In the first room I stepped barefoot onto a cold, 3-walled compartment in which the floor moved independently of the walls that also moved.  She harnessed me in with the same number of straps usually employed with bungee jumping!  I remembered hearing professional dancers talk about focusing on one object as they spun around doing pirouettes so I decided that would be my strategy all afternoon to avoid up-chucking early in the game.  It helped for a little while and I guess I did o.k. during phase 2 (with phase 1 being the audiology testing in October) although the dizziness, uneasiness, queasiness, and feeling of being lost-in-space began quickly.  She allowed me to rest a short while afterwards and for this I was exceedingly grateful.  My feet eventually started to warm up  . . .

brain testing, balance testing, vestibular, rehabilitation, Balance Center, dizziness, light headedness, physical therapy, audiology, ENTI hobbled to the next room labeled, “Rotational Chair.”  Holy crap.  I was doomed!  I never liked the Merry-Go-Round at the playground as a kid and now was the time to find out why.  You know what happens to the kids too scared to jump off, right?  This is probably why The Balance Center instructs you to eat only oatmeal in the hours before your appointment!  So with fear and trembling I stepped into what looked like the anti-gravity room at the Nassau Space Center.  The walls and chair in the “space capsule” were black, equipped with even more straps that comprised the harness and seat belt configuration.  This time my head was restrained as well with the mask pictured above affixed to my head.  Then she closed the door.  I was all alone in the darkness.

I wondered about trace specks of mold, fragrance, and other irritants from the travelers who had gone before me.  Should I have been wearing my carbon mask all along to avoid trace exposures?  My mind was so overwhelmed with the test procedures that day that I would not pull it out until the dire end.  For now, I was to spin in circles and watch the little red dot ahead of me, make the line straight using the “Play Station” controllers in each hand, and hope that the fraction of light peeking through the hinge of the door would re-orient me enough to go on . . .  My defenses were rapidly breaking down.

balance-testing rotational chair

“M” asked me probably 75 questions total that afternoon, spread throughout all of the test procedures.  Had I ever fallen?  Hit my head?  Gotten dizzy?  What about headaches?  Migraines?  Chemical exposures?  You get the idea.  In the chair of the Black Hole, those questions made it impossible to focus enough to use the ballerina strategy to keep my act together.  The nausea crept up inside me then miraculously never exceeded critical mass to prompt a return of my breakfast.  (I took the nausea medication I had with me later anyways!  It was the least I could do to calm things down!)  I am now getting dizzy and light headed just writing about this experience.

When “M” opened the Magic Door and set me free from my restraint, I slumped forward with my head plunging into my hands.  What the heck was happening to me?  Low grade tic attacks erupted.  I felt listless, unbalanced, disoriented, exhausted, sideways, unsteady even in my seat, like I was struggling to keep breathing (as if someone had pushed the air out of my chest), with increased ringing in my ears and a knife-like sub-occipital headache.  The sinus headache had returned as a bonus.  I asked if I could lie down.  She agreed since there would be supine positioning in the next room and testing anyways.  Great.  I strained to hold myself together long enough to make it to the torture chamber just around the corner . . .

balance testing, vestibular, lights, flashing lights, therapy, audiology, Balance Center, testing, dizziness, light headed, head injury, concussions

The usual nightmare met me on that treatment table.  Violent convulsive episodes displayed their wretched glory with deep vocalizations that I could not control.  On and on with no end in sight they came as I lain face down in the position I have discovered that causes the least amount of trauma to my banging neck and head.  My legs were cold.  My hands were cold.  The room was darkened yet the bright desk lamp next to the technician’s computer was too bright for my eyes just 4 feet away.  I struggled to raise my arm to shield my eyes and held on for dear life.

Why was I going through all of this anyways?  Would all of this trauma really yield anything useful beyond yet another human version of a “lab rat” experiment to tell me that something was very, very wrong.  NO KIDDING SOMETHING IS WRONG!!!  I asked for my purse and awkwardly donned my face-mask when I could get my hands to work together enough to do so.  Probably 20 minutes passed before the overt symptoms stopped:  the ones you can see, that is!  Inside I was seemingly beyond repair.  This was going to take a long time from which to recover.  I wept.  The more I write about it, the more I experience a slight flashback of symptoms.  I will pause here for a little cry.  More later . . .

Continued in Part 3