Posts Tagged ‘ multiple sclerosis ’

Ruined Meals

Of course I misspeak — celebrity names, band names, the occasional place wherein time becomes a vague concept… but sweet ladybird lord, how can I know anymore which emotions are mine and are these feelings valid? I’ve learned that if I can’t move or get up after a fall, I will wail. I am not adept with fury. I’m likely to genuinely cry during a touching television special. Politics? My god. And I sob every time Hamilton ends.

Every. Time.

I say inappropriate things without intention, breach uncomfortable social norms without thought and everything will sound sound grosser than intended. I have ruined meals.

Every time I’ve… let’s just go with “ruined meals”… every time I’ve ruined a meal, the situation will play itself over and over as I fall asleep, flanked by similar situations as far back as high school. Horrified, uncomfortable faces of people for whom I care have become a familiar nightlight. Like the flame of a candle getting ahead of itself and setting that dangling fern ablaze.

Feeling feelings is okay – the trick is knowing from whence the feeling arose, questioning its circumstance, and either apologizing or making peace with it. Feeling is always easier than doing. I am not brilliant to know this, but my last therapist did call me a unicorn and gave me the horn which proves it. I’ve been assured that I am nice, but

if I’ve ever ruined your dinner, I sincerely apologize.

As half of this slippery slope, I have to forgive myself. I need to think about what I say before it emerges with unpredictable tone into a room full of strangers. I suppose I should forgive myself because of brain lesions ‘n all, but, well…

[insert dirty joke]

unstoppable force/immovable object

In another TeleHealth appointment with my neurologist, I was told that after I am vaccinated, we can move ahead with my second round of Lemtrada infusions. This round will only be three days not five, so I’m thinking that I’ll probably lose fewer T cells this pass (fingers crossed). It shouldn’t take as long to recover enough to see the simultaneously miniscule and massive benefits.This is where I put some of what hope remains in walking better and falling less.

Last week, there was both a “using walker outdoors” fall and a “can’t get off the floor thereby sustaining more injury long after hitting bottom” fall. Plus, I fall onto the bed a lot and can’t always move when that happens.

I take offense at my pale self for not bruising more easily. Of course I cannot be legitimately disappointed but they do serve to help validate me as a living human.

The “using walker outdoors” fall happened on the sidewalk between the porch and car. The fall is a flash during which I make batlike microdecisions. It’s a little like this:

  • ALARM FALLING BACKWARDS
  • PUSH WALKER FROM FALL TRAJECTORY
  • SWING RIGHT LAND IN MULCH NOT ON CONCRETE
  • CAT’S GOING DOWN WITH ME SHIT ROLL A HARDER RIGHT
  • PROTECT YOUR HEAD ALWAYS PROTECT YOUR HEAD
  • BOOM

Then the aftermath

  • don’t. move.
  • anything broken? no.
  • blood? no.
  • best way to repair current position?
  • can you sit up? can you face this direction?
  • can you get on your knees?
  • can you just wallow around in that mulch for a second?
  • oh look the neighbor!
  • cat, already standing, is on top of it and retrieves masks for everyone
  • a masked hero helped Cat get me vertical and safely into the car
  • hero-neighbor is a hero.

The “can’t get off the floor thereby sustaining more injury long after hitting bottom” fall was a lot. When I fall on the bed, I can get myself back back to the bed and as long as both knees have made it onto the mattress. If they don’t, and if Cat’s not here, my only resolution is sliding backwards off the bed onto my knees. 40% chance I can get up on my own. This one of the times I couldn’t move my limbs well. It was a 20 minute affair of trying and failing and falling and uh-oh three head-to-furniture interruptions and crying because I’m so furious that my body just won’t. It won’t.

Oh, then due to emotional lability I will full on wail and gnash my teeth. I am FURIOUS with my inhumanely weak self. Feeling emotions makes me a terrible show. Afterwards, I will be exhausted in that insidious MS fashion.

Ok.

Negativity calls for a hard left into pet pics.

The “bads”

I was comforted to find an article on multiplesclerosis.net titled “The Afternoon Slide” by Devin Garlit. It felt full of uncanny but comforting similarities:

For me, usually around 2 PM most days, my symptoms start to act up. Extreme fatigue, spasms, weakness, pain, and cognitive issues… tend to be the big ones.

Any time after noon, I’ll start feeling dark clouds beginning to accumulate through my limbs until the shy storm reaches my brain. It’s slow moving and gets worse until a peak around 4:30pm almost every day like nearly functioning clockwork. Without a solitary symptom taking front stage, we just refer to all of it as “the bads.”

At their worst, the clouds fill, tall, through the head. Fatigue makes moving a Herculean task: my legs throb, I’m slack jawed stupid, without full motor control, and pained eyes. I may lay down, but if I do I will usually be unable to move for an hour or more.

My wife described it once in a question: “You know Mary from Little House on the Prairie?” Swells of vertigo keep me from moving my neck, and my eyes will appear to not have vision. They do, but the slightest change in direction is an attack. I stare straight ahead.

That said, thank you laptops everywhere.

I’m grateful to have been able to learn the general structure of my days and adapt as well possible. Any control over circumstance is a favor.

Also Day

“The hell I’m just going to go chop that onion” she stated sternly. My wife stood over my body where It had landed.

It was the first big fall of the last several months. My left leg stopped working while in hallway-practice with my walker. I tried to take a step then ricocheted from one side of the hall to the other, slid hard onto my rib cage.

It could have been worse (always could’ve). In the second before I hit the ground, I immediately pushed the walker away to avoid it and did whatever I could to protect the head. This system has helped me get around worse.

I shouldn’t have said that out loud because that may negate it all.

I am so grateful for my wife. Without her I’d have just dragged myself back to the bedroom and waited to get back up. I mean the tv was on auto play so it was bound to end successfully with both entertainment and a clamber back into bed.

I proposed this but was shot down. She pulled up the chair. I tried to sit up and get my shins flat on the floor for a few minutes. She assisted me trying to stand (& failing) and get seated. Though I wouldn’t have been able to get off the floor without help, because it’s an incredibly stressful situation she was just as fallen.

We both went to bed early last night. Today she helped me make a pot of soup, swept up all the frozen vegetables I dropped.

Points for peas and carrots.

Then she took both dogs for shots. Then she went back out to the store.

I am so lucky and so in love.

Also, how did I make it to forty without ever having a cheese puff? Because that too.

Invisible Illness Awareness Week

I don’t consider my MS invisible anymore. I barely noticed that there could really be anything wrong about my life. Generally because I’d only received, from pediatricians to Medicare “you just need to lose weight Ms. Fattyfatty Burgerpatty.”

Fair enough. I have after eight always needed to drop a pound or ten; only hearing from doctors that all of my problems were related to my weight was an underhanded but brilliant way to prescribe eating disorders.

I only continued to gain weight. Peers seemed unnavigable but there were always desserts. Neurological symptoms began to unmask in middle school. I just needed to lose weight.

One of my first after-Dx (@28yo) neurologists left in view a pad with “OBESE” scrawled in allcaps across the top page. I had just lost 75lbs.

I changed neurologists but found that none of them could journey past my pounds. My neurologist now is in a different city and is incredible.

I’m not able to maintain injured astonishment anymore. I no longer have the luxury of anger. I have had to accept that I am not lazy because moving my body is too difficult. That it’s okay to leave dirty dishes in the sink. That it’s okay to have a high level of disability and find happiness.

What a cruel trick on yourself to not seek joy.

I could (and still someday may) list every one of my Sx. Let’s instead take a hard left into a generally chronological list of the things of which I am proud and should keep remembering:

  • First in-a-book published poem (high school)
  • Published multiple times in college Literary Magazine
  • I spent a college summer in Italy and at nearly 300lbs walked miles across countryside and major city.
  • Had a small exacerbation in my Italian dorm, then still climbed to the top of some of the world’s largest cathedrals. The Byzantine narrow upwards-tunneled stairs are a badge of horrific physical honor. I got to look across all of Florence in Brunelleschi’s Duomo. I climbed to the top and walked and fell down on the roof the second-largest cathedral in the world. ^pic^
  • I’ve been to Pompeii, Rome, Venice, Florence, Milan, Urbino, Orvieto, Pesaro, Capri…
  • … and in Padua I got to see the late Byzantine/early Rennaissance fundamentally famous works of Giotto di Bondoni (Time’s Man of the 13th Century!) in the Scrovegni chapel.
  • Learned more about modern art and decided Duchamp’s signature from his most (in?)famous work of art (The Fountain) would be my second tattoo.
  • Oh and of course the college degree in (you guessed it!) Art History with a minor in Italian
  • Went to the Washington, DC Rally to restore Sanity and/or Fear (Stewart, Colbert)
  • I’ve made a 829′ jump off the tallest building in Las Vegas.
  • I made it down and up those Dali-esque stairs at Amicalola State Park
  • I married my best friend at the Supreme Court of New York City then honeymooned on Broadway. We just celebrated our eighth wedding anniversary and I may sometime write this incredible movie-ready romance.
  • I got to ice skate at 30 Rockefeller Plaza
  • I worked on design for a project at the state museum
  • I was design lead two years for the local chapter of NAMI on a regional fundraiser.
  • I designed a billboard in downtown!
  • We got to meet Daveed Diggs at a clippng show in Chapel Hill. Shit, omg, Daveed Diggs. You guys. Use TouTube; if you don’t know, now you know.
  • I went whitewater rafting.
  • I got to create logo and t-shirt designs for SC Pride
  • I was design lead on two annual fundraisers for Protection & Advocacy for People with Disabilities.
  • My wife and I received from a dear friend TICKETS TO HAMILTON.
  • I got to create the logo for the Yoga for Everyone class/community
  • Maintained 100lb weight loss for 8 years (until chair)
  • USC TED talk speaker
  • I’ve had poetry published in the Jasper Project and selected for community projects (poetry on city buses!)
  • I’m creating book covers for independent authors
  • I performed in Martyna Majok’s Pulitzer-winning script about disability, Cost of Living. I was Ani.
  • Please enjoy all of the relevant but unorganized images below:

DO go chasing waterfalls

The worst part isn’t the fall but the frozen body’s failure to respond; like something electric hitting a heavy surface, whatever batteries by which movement is made are abruptly disturbed. Some days now I cannot move my body at all, fall or not.

Regardless, my wife and I celebrated our eighth wedding anniversary with a drive through the mountains. Autumn leaves were vibrant, waterfalls were located, and one of the dogs needs not to be left loose in the cabin on winding unfamiliar roads. All 60lbs of Warren clambered along the driver’s left shoulder. Unsuccessful neither at getting up front nor causing a terrible backwoods accident, he clawed between the seats into my lap. Thrilled with his communicative victory there was much excitement.

But oh sweet country savior, those toenails.

Do you remember the giant claw-nail on Jurassic Park’s velociraptor? That is all of Warren’s nails. Intensely painful on human thighs (puncture bruises, scratches, torn pants) but even a gentle tip-clipping triggers him. Tail tucked, he trembled once behind a curtain.

We’ll figure it out buddy. Good boy.

We voted the day before this long and loving kerfuffle. Lines at our small precinct. People stayed a respectable distance from one another and cars snaked around the back of the building.

On the roof’s front precipice a bird in silhouette kept its wings spread over everyone waiting to cast a ballot. We’re still trying to figure out its origins, but boy howdy was it a regal welcome to all.

Anticipated Surprise pt. 2

I am grateful to no longer be corded to the tiny box and that there are no more infrared cameras in the bedroom. This whole experience was novel the first day despite some acceptable inconveniences. The cord attached to me began to be a troublesome chain connected to a small plastic case on a long strap. When I could stand, it was not fully, pulled by the attachments connected to my skull.

My head is so happily naked.

My hair is full of the waxy gum that held the electrodes. Though its extraction a petty trauma, I got two scalp massages for my trouble.

The worst part of the last three days was Wednesday. I fell off the bed at least ten times, and couldn’t get up from the floor for an hour after the second set of 5. It’s okay though; YouTube was on auto play and I am grateful to have had something to listen to. Eventually, I was back in mattress town.

Thursday I could barely get off the bed and my body commanded me to remain still at any exhausted cost.

Today is Friday. I’m still having trouble getting out of bed but I can.

I will retrieve at least a modicum of movement by tomorrow, and I’ll be able to get back to practice-walking without a fanny pack dangling 18″ from my shoulder.

Nobody wants a fanny pack, no matter its strap.

These bruises from yesterday are already starting to fade and those injuries will heal before or by the time we vote.

Vote.

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.

 

 

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.