The World’s Slowest Confetti-Maker

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Tearing a folded piece of paper is not something that most people put much thought into. In fact, folks probably do it all the time without thinking of the physical effort that such a motion takes. Especially if it’s thick computer paper— the fancy kind that you can only buy at an office store. The tangible, professional-grade that big banks, mega-corporations and white-collar criminals use right before fucking over a bunch of middle-class homeowners. Or stealing the identities of poor old people that don’t know that Windows isn’t just something that you cover with drapes.

For those of us with SMA, tearing a folded piece of paper may actually be hard… if not impossible. Prior to beginning my Spinraza treatments, it was a task that I had not been able to do in a very long time. Not even the thinner type of paper that you buy at the dollar store. The kind they sell next to the cheap neon highlighters that smell like meth.

But, this ability is tested during the very-important PT assessments that measure my progress with Spinraza. While it seems an odd thing to test, it’s actually a good measure of hand strength and changes in grip. I’ve had two assessments so far, and I could not complete this particular task on either try— which royally pissed me off. As I’ve demonstrated before, I’m not the kind of person that does well with failure. If there’s an exam, I had better get an A. And if I don’t, I will not be happy about it and I will work myself into a damn tizzy to score better the next time. If you know me at all, you’ll understand that this is not an exaggeration. In fact, you’ve probably also worried that at some point I’m going to give myself an ulcer.

Next month, I will undergo another full PT assessment, which means that I will be confronted with that piece of paper. And, I really don’t want to fail that task once again. I don’t want to be a sad loser like the Mets or Hillary Clinton. So, yesterday, I began to practice this task. Fiendishly. Surprisingly, after about seven minutes, I achieved victory. I tore that damned piece of paper in half. And then, about twelve minutes later, I did it again. I was so happy that it didn’t seem to matter that I was sweating through my Secret Powder Fresh deodorant.

Today, in the time it took to watch two episodes of Comedians in Cars Getting Coffee, I tore a piece of paper FIVE FUCKING TIMES. If you don’t believe me, here’s a picture of the paper:

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If you’re wondering how long it actually took me in real-time (not Netflix-time), it was about 30 minutes. So, roughly six minutes per tear in the paper. Although, I did two of the tears in less than 30 seconds— which, interestingly enough, is the same duration of President Trump’s attention-span.

I’ve got several more weeks to prepare for my next assessment, so wish me luck. Maybe, if I keep at it, I will no longer be the world’s slowest confetti-maker.

A girl can dream…

Margaritas & How To Stalk A Physical Therapist

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Earlier this week, I made the journey over to Stanford for my post-Spinraza-loading-doses evaluation. The neuromuscular team wanted to check my progress after beginning treatment. They are closely monitoring every aspect of my condition for their records— and to prove to insurance companies and other doctors around the world that, yes, Spinraza works on adults, too (not just kids). That way the insurance companies can stop being discriminatory, money-grubbing, ageist fuckheads so doctors can do their jobs and TREAT THEIR PATIENTS!

Whew, sorry. I got a little worked up there. Usually, I only get this riled up when Starbucks is out of caramel sauce… or I see motorcycles cutting people off between lanes in traffic… or I have to listen to Donald Trump speaking words together in clusters (i.e. sentences).

Anyway, at the beginning of the entire Spinraza process in February, I had an entire battery of tests. I saw physical therapists, respiratory therapists, occupational therapists— basically every kind of therapist that exists, except for the psychiatric kind. Which was unfortunate, because considering how drawn-out and stressful this whole thing would end up being, perhaps seeing a psychiatrist at the outset wouldn’t have been a bad idea. Maybe then I wouldn’t have needed as much Xanax, Netflix, or chocolate fudge ice cream.

They measured everything that could possibly be measured. The strength of my muscles and lungs. The flexibility of my joints and limbs. My fine motor skills. My ability to do long division. And if I knew the difference between their/they’re/there.

Okay, I might have made those last two up.

But, I think they should have tested that.

Anyway, this week, I had to repeat all those benchmarks again. As I am a high-achiever, obsessive-type, I had begun prepping for these tests at home. If there was going to be a test, I would get a good score. If there was a gold star or a happy face sticker to be earned, I wanted two of each. Maybe three. Yes, I am that person. That person in your high school class that always wanted to earn a higher score than you did.

In the days and weeks leading up to my follow-up evaluation, I did stretches at home, lifted small weights, exercised my hands with a squeeze ball, and did deep breathing. I was determined to score better than last time.

Upon arrival, I was weighed. I discovered that I had gain several pounds since February. While I’d like to think this was muscle weight gain, I suspect it’s more likely due to the extra chocolate fudge ice cream.

One of the last tasks in my first evaluation was to lift a pound weight from my lap to a table. I couldn’t complete the task last time. I couldn’t even move the weight at all. The cuff weight just sat in my lap like a useless lump as I poked at it with my tired fingers.

This failure haunted me. I’m sure Kim Jong Un feels the same way each time one of his rockets crashes into the sea.

So, I worked on this maneuver at home. I found a 16-ounce bag of dried split peas in the pantry and practiced lifting it from my lap to my desk. After a few days, I could do it quite easily. I was ecstatic. On the day of my recent evaluation, this was the test I was ready to tackle. I wanted to OWN it. And, in celebration, I promised myself I’d have a margarita on the rocks— with lime.

Unfortunately, I had to do nearly ALL the other tests first before this one. I showed off my slightly stronger biceps, triceps, my increased grip, and the wider range of motion in my hands. I was working muscles that hadn’t worked this well in a few years.

The downside to all this (you knew this was coming, right?), was that by the time we approached the lap-to-table weight test, I had begun to tire. I was able to lift the weight into the air (which I couldn’t do months ago)… but I didn’t have enough oomph to get it on the table.

I began to panic. I tried again. And again. And forced the physical therapist to stay longer in the exam room so I could try again. I could feel the gold star slipping through my fingertips. I did NOT want my damn rocket to self-destruct over the Sea of Japan. No, no, no.

I knew the physical therapist had other patients to get to and I could tell she was annoyed with my obsession with completing this one particular task. I was like a dog with a bone. I wouldn’t LET. IT. GO. I was like Donald Trump still obsessing over Hillary Clinton. I just couldn’t move on.

But, the physical therapist had had enough. When she left the exam room, I nonetheless shouted after her as the door closed, “If I can do this task on video will you give me the points for the task?!? Will you?!? Will you?!?

Yeah, I was that person.

It didn’t seem to matter that I went on to ace my pulmonary function test… that each measure of my respiratory ability had improved. I was still obsessing about the goddamn weight test. I wanted those points.

After a short rest, I had my friend start videoing me… I managed to lift a weight from my lap to the table in the exam room. Inside, I cheered… HELL, YEAH! I did it. I had proof. However, the physical therapist was gone by then.

But, if we’ve learned anything about me so far, it’s that I don’t give up easily. Upon leaving the neuromuscular department, the occupational therapist came over to chat. Before we parted ways, I burst out, “oh, and could you please tell Tina that I got a video of me putting the weight from my lap to the table?! Could you?!” I took a breath and added in a desperate rush, “I want those points!

Yeah, I was that person.

Despite that emotional hiccup, everything else went well. And I was happy with how things had unfolded. The whole evaluation took nearly three hours, though, so I was exhausted by the time we loaded up in the car.

But, on the entire 2+ hour drive home, I thought about the celebratory margarita I’d have later that evening. I had moved that weight from my lap to the table. I had video proof of it, even though it may not have counted. And that’s all that matters, right? That margarita would be mine.

I think I deserved it.

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buymeacoffee

Commuters, Gladiators & Me

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After my experience with my last Spinraza injection, I came into Dose #3 like a soldier ready for battle. If there was a potential contingency, I had already thought of it— at least twice. I was like fucking General Dwight D. Eisenhower in advance of the invasion of Normandy. I was mentally and physically prepared. I had taken a mini Xanax and hydrated like an Olympic marathoner. I was ready. Fear me and my Spinraza greatness!!

On the morning of the injection, I woke up at 3:45am— a time when most reasonable folks are asleep. But, if you are President Donald Trump, it’s your favorite time to sit in the dark and send weird messages to your 36 million Twitter followers.

I got dressed, and we ventured out into the pre-dawn morning to make the trek from Patterson to Stanford. We encountered a purplish sunrise and about 765,983 damn commuters clogging the roadways.

I was distracted by my upcoming procedure by contemplating the utter horror all those drivers endure each day on the roads. How do they do it? How do they manage to survive that commute each and every day? Maybe they were the ones that needed the Xanax— not me.

We arrived well in advance of my appointment and managed to snag one of the coveted handicapped spots right in the front of the Neuroscience building. Getting one of those parking spots is like winning the lotto, only way better because you actually have a chance of winning. (Yes, I’m talking about you, feverish Powerball players. Let’s be real — the more millions in the jackpot, the less chance you will win. And spending more money to win isn’t a guarantee, either. Just ask Hillary Clinton.)

For each of my Spinraza injections thus far, I’ve had a different team of doctors performing the procedure. Stanford is a teaching institution, so there’s a rotating group of doctors eager to plunge that needle into my wonky, curvy spine. This time, my team was extra-confident. They strode into the room like Russell Crowe in Gladiator. After examining my scans, one doctor proudly announced, “I’ll get this done in 20 minutes.

My last procedure had taken over 90 minutes. In my mind, I thought, “Bullshit, Turbo. You’ve never met a spine like mine. I’m your damn Kilimanjaro. I’m fucking Mount Everest.

But, I stayed quiet. I didn’t want to squelch his enthusiasm. I also didn’t want to piss him off since he was the one with the really big needle.

I got into position on the table and they began. I listened to their low, confident chatter behind me as I let my mind wander. I thought about food— as I often do, generally. I was hungry since I had to fast for the hours prior to the procedure. I contemplated lunch….. and then I felt a zing of heat down my left leg.

Whoa– what was that?” I called out as my nerves quivered in response.

I’m in,” Dr. Confidence remarked behind me― like a member of the DAR coolly ordering a Cobb Salad at a country club.

My brain stalled for a moment. I looked up at the clock on the wall in front of me… a mere 20 minutes had passed. I had difficulty computing what he had said. I sputtered, “Wait— what?! Are you for real?

Yes. I’ve already begun to collect the spinal fluid before we inject the Spinraza.

Like a Looney Tunes cartoon character, my eyeballs began to bug out of my head, “Holy shit! You weren’t kidding at the beginning, were you?

Nope,” The Radiological Gladiator replied.

Elation flooded my veins. I felt like it had suddenly become Christmas Morning and Santa had brought me a really great present. Like a My Little Pony. Or an Easy Bake Oven. Or a $125,000 injection administered pain-free and in World Record Time. SWEET JESUS, SANTA IS REAL!

I was wheeled out of the fluoroscopy room just a few minutes later, my face wreathed in a smile, while clutching another, empty magic little vial in my fist. VICTORY WAS MINE!

Like Russell Crowe, I wanted to yell out, “My name is Maximus Decimus Meridius, commander of the Armies of the North, General of the Felix Legions, loyal servant to the true emperor, Marcus Aurelius. And I will have my vengeance, in this life or the next!!

I didn’t yell that, of course, because I didn’t want them to think that the Spinraza was making me psychotic.

So, instead, when I returned to the room, I gulped down some water, and a caffeinated Mountain Dew to ward off the spinal headache. Then, I scarfed down a sandwich and sent a flurry of texts to my loved ones— my more-nimble fingers flying across the screen like super-sonic gnats.

Yes… Spinraza works, mIMG_4323y friends!

xoxo

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