Posts Tagged ‘ wheelchair ’

Musical Medical Chairs (+GRATITUDE ADJUSTMENT)

This is still a big problem.

This is still a big problem.

Because my neurologist’s office makes a big point about not switching doctors within the practice, I’ve just been needlessly detained for weeks while they keep losing paperwork sent by my neuropsychiatrist that details why I need to switch physicians. I don’t know what other practices are in the area, but it’s time to check. I need to sit and write a complete history of my time under the care of this physician. I lost a year of my life and gained “many new” brain lesions under his lack of care; he made “using a wheelchair” gestures to chastise me… for not receiving care that his practice withheld. Most recently, I made the choice to not go through the Gilenya all-day First Dose Study because, after having gone a year without treatment, I was still not receiving a time or place to do it. I just started taking them on my own and, good news!, nothing bad happened. I have been my own physician for longer than any layperson should, and many of the physicians I have trusted with my care have fallen farther than short.

Don’t get me wrong — The Wahls Protocol is still remarkable, and the changes are still epic in my book. A warm day this week, however, was a polite tap on the shoulder from my nervous system after which it took an entire evening to recover. A sudden loss of motor skills and cognitive slowing almost seemed foreign (almost). Summer reminds me that it is no chump and can still best me.

But end of rope reached (before anything really bad happens!? Go on, girl!) and I need to look into finding physicians.

In the meantime, there’s laundry to fold, dinner to make, and a house to clean. Maybe before I even do those things, I need a full-on GRATITUDE ADJUSTMENT:

I am grateful that my health is, in many ways, better than it’s ever been.

I am grateful that I feel like I can have a productive day.

Back center in the red wig: I was going to marry that musician.

Back center in the red wig: I was going to marry that musician.

I am grateful for my incredibly talented wife; I get to be privy to her private home rehearsals as she gets progressively more amazing as The Witch in a stage version of Sondheim’s Into the Woods. (I fell in love with her after the first time I saw her on stage several years ago. But I didn’t say anything to her then because she just looked… so above me, y’know? Without costume, I didn’t realize the waitress I seemed to hit it off with was the same siren that left my knees weak months earlier.)

I am grateful for kale chips.

I am grateful for a fridge full of produce.

I am grateful, now that summer is here, for Sheex®  on the bed.

I am grateful that my mom is recovering from her second knee replacement, and even more grateful that my dad is there as caretaker/cook/landscaper/houseboy. 🙂

I am grateful that #MindsOnMain wass successful enough to become an annual event!

I am grateful to have had the time to begin creating book covers!

11020769_10206485101228382_3872190026647930666_nI am grateful for great new housecleaning music

I am grateful for Cowboy, despite his new aged persona named “Lord Grumblebark” who appears only when Cat has been out of the house too long (after-work rehearsals) to release a litany of arbitrarily-timed woofs from the very pillow on which she will hopefully soon again lay her head.

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Some Motivation Required

some_motivation_required_exercise-300x225My wife volunteers weekly at an adaptive yoga class here in town. It’s the first I know of around here that’s geared towards people with physical disabilities that limit their movement. Because I have heard so often from people what a healthy-looking person I am to have MS, I didn’t really consider myself in the same need of adaptive yoga as the students who entered class in wheelchairs or with paraplegia. In fact, I was the only one who showed up not in a wheelchair. Talk about feeling like the biggest walking punchline in the room; not only did I feel like the odd man out inside the studio… but walking out after class was confronted in the remaining daylight by how much safer and slower I did need my yoga. During the hour-long class it was made apparent just how little punchline there was, as I felt as challenged as anyone else. I left sore with a body that felt cleaner (rain notwithstanding).

medium_4584502251I left, too, with an understanding of my own limitations that had been previously been swept under the table. Maybe in conjunction with our recent transfer from up- to down- stairs bedrooms I was better able to pick up on little lies I was telling myself. It’s really been sinking in slowly that my ability to walk should not be taken for granted. Yes, I’m young — only in my early thirties; alas, my condition, in relation to this, is not. My pelvis continues to be wracked by the same pain during the night as it did when I was 13. I had MS for more than half my life before it was diagnosed a few years ago. My “normals” aren’t completely new — in the way a frog can be boiled without knowing, I have adapted as bridges present themselves for crossing. So now there’s a cane involved, whatever, I’m still not being boiled… right?

Wait, which metaphor am I using again?

Point is, I think, that I’m scared that RRMS is over and SPMS has started. I don’t feel as much remitting after a relapse… in fact, I am uncertain if I’m not having an exacerbation right now (increases in bladder and spasticity problems) and I’m scared that the Gilenya isn’t working.

419140_470645949683011_886272741_nFeeling that little gut-punch of believing the worst of yourself is something I’m training as a red flag. I am no stranger to anxiety and I am tired of it taking over — when fear starts, it is time for a GRATITUDE ADJUSTMENT:

  • I am grateful for adaptive yoga for people with physical disabilities.
  • I am grateful to do something good for my body that doesn’t cost a worse price.
  • I am grateful that there are groceries in the kitchen.
  • I am grateful for all of my Rx medications.
  • I am grateful for a fun morning out with Mom this week.
  • I am grateful that Cowboy got to see his ridic-beloved Grandma.
  • I am grateful for Facebook photos of my nieces.
  • I am grateful for my amazing wife; truly, I mean this every time I write it even more than the last time.
  • I am grateful for a SSDI court date!
  • I am grateful for silver linings that open up the end of a tunnel.
  • I am grateful for you. Thank you.
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