Posts Tagged ‘ multiple sclerosis ’

Pseudo-ble

“I have had a better hold on my symptoms for the last several months,” says the silver lining proudly. And for that I am proud, and I am grateful. Things started getting rougher right around Christmas, culminating in a full week of the kind of daily pseudo-exacerbations that really make one tickle the chin about needing the prefix “pseudo.”

air-stone-2The end of last week began seeing the escalation from moderate dizziness/clumsiness to the kind of fishtank-aerator-inside-the-body level of disability that brought me more than once to tears. Yesterday was less severe a day, so it gives me hope for today being a better grasp at baseline.

Monday I fell out of the chair at my PT’s office. Went to sit, ass off-center just enough to pivot the seat with my body towards the ground. My arms are still luckily quick to respond, and kept me from eating the trash can. I don’t know whether to be embarrassed or glad that there was a witness.

Despite the best efforts of Urogynecology, Pelvic Floor Physical Therapy, Myrbetriq, and even (physician-recommended) Dr. McGillicutty’s Wand for Female Hysterics, I am still sleeping poorly. My bladder wakes me up 3-6 times a night now — an improvement over 12+ times each night, but doesn’t address a now infamous inability to go back to sleep after stumbling across the hall. No matter how tired I am or how many bubbles are rocketing through my extremities.

But today is better than yesterday, and I netted 6 hours of sleep (in various lengths of time) last night. Despite a bad week, I worked with clients and even picked up a new one. I am trying to move away from carbs to vegetables again (it was cold and festive for a while, damnit). Tonight’s dinner was created with less difficulty, but all the love: broccoli soup from scratch for optimal cruciferous goodness.

That is why the house smells like farts. The soup. Really.

 

 

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Finding Perfection in Imperfections

CL8ENirWUAAb5KZ (1)The weather hints at becoming cooler. I might be jumping the gun a little — it is South Carolina, after all — but that’s only because a summer indoors has high potential to induce, at best, wicked cabin fever (at worst, I imagine, complete insanity). Though still a warm afternoon principle presupposed physiology when Bernie Sanders came to town.

I made it the 1/4 mile walk from the parking area (a recently plowed dirt lot that happened to exist like a craggy red Martian field across the space between the convention center and nearby interstate) and wound to get in through a line around the building. Once inside, by some grace of the living animal that is a crowd of hundreds, I sat and a staffer immediately ran over with a cold bottle of water. I can do this, I thought. This is awesome and I want to be doing this. 

I remained in good spirits, but my words began to falter. The throbbing crowd seemed to spin around me like autumn leaves in the wind. I just needed to make it to my seat in the ballroom. Unfortunately, that seat was somewhere in this:

11896041_10153005969953038_6633555188431079982_n (1)

The room was packed as tightly as possible with people who also “Felt the Bern.” I pressed the cold bottle of water into my neck, chest, forearms. At first it was enough to be in the palpable midst of such excitement; the room kept filling up. I realized that it was more than a shared spirit that linked us all:it was our mutual body heat in a room where air conditioning was questionable. By the time Bernie reached the stage I was slumped into Cat and couldn’t stand or speak. I looked blankly at Cat now asking me questions. Blah, blah, MS ruins another day, blah blah… but suddenly Cat was getting me up and out of the room. In what seemed a blur of the arms and legs of 100 strangers, a staffer handed me a cup of ice water, and another staffer shuffled me into the bathroom. “This is the coolest place in the building,” she said, “The seating is terrible, but…”

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[after sitting in A/C for a few minutes]

Within minutes of cold air in a [pretty clean: bonus!] bathroom I began to feel cognizant. “There’s a staffer with pigtails saving you a chair in the hall,” someone ducked in to say. I was able to listen to the rest of the town hall meeting after all, from a plush chair outside the ballroom’s door. Because of these amazing staffers I was able to walk the 1/4 mile back to the car, where air conditioning met me with cold, open arms.

Then we celebrated this warranted joy with tacos from a local carnicería.

A few days later, the A/C in our car died. Cat is, as we speak, tending to having that fixed. Because I am lucky and loved.  “Losing myself” in public is scary, and I can’t be more grateful to the woman I married for taking care of me when it becomes obvious I no longer command the necessary faculties to do it myself. Autumn is coming, the car will again have A/C, and I’m jumping at the bit to start leaving the house more. I am really into this “Remitting” part of Relapse-Remitting MS — once climate shudders off some of the heat, I hope to really get this party [“leaving the house for more than groceries”] started.

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.

The Learning Pendulum

~1m walked, a dozen posters hung

~1m walked, a dozen posters hung

Yesterday while driving across town from a street on which I’d just walked the length to drop off posters, a heavy ball settled in my gut as though its motion, otherwise subtle in its propulsion, suddenly became evident by an unexpected rest. Everything felt right. I had just spent the day walking boldly through sunny shopping centers with a small stack of posters under my arm, smiling with genuine cheerfulness, talking to strangers without anything embarrassing coming to pass, and, now, driving a car safely and well.

In last night’s Adaptive Yoga class, I got to assist again. I felt strong and capable and nearly left in tears because of that. I can’t find a way to accurately, but not awkwardly, convey how much this class means to me

The day before, I’d spoken with a new Functional Medicine practicioner at length about how to continue these positive changes. I’ve done pretty dang good for myself as an MS patient coming into the sunlit side of neurological crisis without having had any doctor’s care in a year. I feel like my cognition is finally getting back to its baseline (although, let’s be honest, it’s fundamentally impossible to know everything I now leave behind). I then also made dinner, did the dishes, some laundry, and spent 20 minutes in the front yard on some simple labor that resulted in ZERO new injuries.

duchamp4Everything good that happens to me right now feels like a record-skipping visit from Santa that keeps happening. I feel hope in getting — being — better. Science is easy to understand again and I am excited instead of fearful to keep learning. This is the pendulum of things swinging, and I am smart enough to again see that; I am smart enough to know that everything could still be lost to me in a moment and that the pendulum’s nature is always in the reverse of itself.

Until whatever circumstance reveals a return, however, I can focus on the problems that do remain while I can also be lucky enough to help other people (what’s the point of getting yourself better without paying it forward? If the airplane is crashing and you put your air mask on first, the very next step is to help others put theirs on as well.)

Maybe I’ll write that coffee table book on local public restrooms (I have seen and judged them all).

State of The Function

Kale-for-Alzheimers-dietThe more strictly I follow the Wahls Protocol, the more I can feel improvement slowly fading back into normalcy with nearly the same quiet apology with which it left (sorry to leave the party so early, yet chagrined to return without a bottle of wine for the host). It’s been over three months now that I haven’t needed a cane, my fatigue levels have stabilized, and my cognition feels more trustworthy.

I had a cold this week. The ease of dealing with it broke me into tiny peals of laughter more than once. Of course it was a pain in the bottom and I felt bad. I stayed in bed one day. Every moment of this situation passed under rapt scientific awareness — specifically, how different it felt to stay in bed with a cold as opposed to staying in bed because of MS. Of course my entire body was tired… but I could still move any part of it I liked. I sneezed a lot and am sporting one of those red noses dusted with a snow of dead skin to prove my victory over this tiny trial; I took 50mg of zinc and was better by the morning.

And as if to overshadow that tiny joy with terrible reminders so as not to yet take newfound health to heart (and thereby, for granted):

  • Remember that your bladder’s not paying any attention to dietary changes
  • Neither is the spinal degeneration
  • My eyeballs still hurt almost all the time
  • Swallowing is still a thing
  • The Pseudobulbar Affect and thundering anxiety cause too many problems

…But, hey, remember too:

After over a year of terrible care from my neurologist resulted in significant cognitive and physical disability (dude, that speech impediment was completely terrifying and I am endlessly grateful it hasn’t stuck around) I finally got that appointment with a neuropsychiatrist (it only took a year). It was a huge relief to talk to someone, knowing they were schooled in exactly how lesions on the brain can manifest, about the emotional side effects of MS.

(I am honored to have designed this logo for the event)

(I am honored to have designed this logo for the event)

There have been so many more reasons to feel grateful than maligned; sure, there’s still bad stuff… But right now I can walk without a cane (not since 2010!) and without going numb from the waist down (not since 2005!). For those and other reasons, I’m going to join the parade for the upcoming #MindsOnMain event in Columbia. Please consider helping me raise money for the National Alliance on Mental Illness Mid-Carolina chapter by clicking here or on the image to your left — all donations go directly to funding programs and services that help the 1 in 4 adults who are living with a mental illness. Mental illness is a common attachment to MS, either by way of lesions (Pseudobulbar affect, holla!), by being terrible to you, or to your loved ones.

#MentalHealthMatters because the brain is a part of you, and you are a part of everyone else.

Wait, Where am I Again?

the-world-must-hate-me

*Just kidding, guys: does any of us ever really know where our futures will lead?

Has disability been a fevered dream, or has my brain been now so warped that it has decided on its own in which mortal plane to dally? Do I have any remaining gullibility that lends itself to hoping I have actually walked in both – all! – these planets? Can I be so lucky as to have remit the symptoms that not long ago I was told to accept as normal while my life was chewed slowly from inside to pieces so small they could no longer be divined?

I lost my cognition, and nearly almost too my legs in the bed from which I sometimes could not move. The world always spun and I trained my body into successful accomodations for a 4-dimensional 3-dimensional existence. I accepted that I might never read another book.

Many of those things have largely ebbed now and I find myself stopping with them as though frenemies had been made with the foes and I am still calling kind farewells from the dock across a blank ocean. I am tired of reintroductions between other selves and feel it is my blessed entitlement at thirty-four to not have to deal with myself in this fashion anymore.

ill-just-wait-hereEntitlement is a distortion of veracity and I know better; there are still symptoms that remain steady or pop up are little haunts. My vision is still blurry and moves like like a poorly-animated .gif. There are times of occasional fatigue, and during walks the dizziness and slurring of words remain palpable.

But I am awake again and for the first time in years looking at the path I want to take in this world. I imagine I should know where I’m going.*

The Evolution of “Free Time”

10940565_10152560878573038_929884811307394105_n I shit you not, that is really me. I am wearing ice skates on the rink at Rockefeller Center.

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And also we got Michael C. Hall’s autograph. I mean. 

We spent the weekend in NYC to see Michael C. Hall’s final performance in Hedwig and the Angry Inch. We got lost around Manhattan both on and not on purpose. I walked — still without a cane — around miles of city blocks. We came across a flea market in the Upper West Side, and dined in a tiny Indian restaurant once visited by Vice President Al Gore. We had gluten free NY-style pizza in Brooklyn and saw a cousin I haven’t laid eyes on in twenty years. I had a cocktail with dear college friends before heading to the Belasco theater.

Oh, and the walking included ALL OF THE SUBWAY STAIRS. A realistic tally would be (really) 100 stairs each day. Over the entire course of the weekend, despite the amount of time spent walking I never lost sensation from the waist-down.

I’mma need to repeat that with italics: I never lost sensation from the waist-down. Since 2005, it would only take about .25m of ambling before I began to lose feeling in my hips, then thighs, calves, and feet (and eventually the feet stopped being a part of the process altogether; I simply couldn’t feel them and relied on trusting the reality in which I of course had feet). The first time I noticed it was during a long trip to Home Depot, and it was at least another year before I admitted it aloud (saying it out loud would make it real).

Back to the ice skating thing: Now, the biggest mistake I made was putting on skates a size too big. I only made it around the rink once before I was afraid of breaking a shin.

Ice-termath, both shins

I have so much to be grateful for right now that I can believe remaining troublesome symptoms that have not yet resolved might actually improve. Visual focus and diplopia, nighttime spastic bladder are both still problems. I still get ungodly dizzy… but a little less often. I have started feeding the dogs with fewer problems changing directions and bending over without internal tragedy. I have been without gluten for about three months, and I am only doing my best at eating 9 cups of vegetables a day. But it’s becoming an easier rhythm the more I stick to it — and the better I feel, the more I want to not cheat on this diet. My mom thanked God and Dr. Wahls in the same breath when she saw the picture of me on ice skates.

Back to the ice skating thing: Now, the biggest mistake I made was putting on skates a size too big. I only made it around the rink once before I was afraid of breaking a shin. But I went around the rink once without once touching the rink with my bottom. Shins aside, this is a total win.