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…

August Awareness and Lots of Stretchy Pants

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August is known for many things. Even though most summer vacations are ending, it’s still a month when the heat is blistering and the yucky air has that palpable, tangible quality… like an dog’s fart. Also, schools open this month and all the pumpkin spice food products will begin to appear in stores.

If you think it’s too early for it, you aren’t alone. Even though I have a well-developed love for pumpkin spiced lattes, I don’t want to drink one while it’s still 100 degrees outside. I don’t care if there’s a chance that my sweat could smell like an autumnal wonderland. It’s still not worth it.

August is also Spinal Muscular Atrophy Awareness Month. The month that celebrates and brings awareness to the 1 in 10,000 babies born (including me!) with a really peculiar— and often deadly— genetic glitch called Spinal Muscular Atrophy (SMA). While the condition is rare, 1 in 50 people running around this earth are actually genetic carriers. But, since it’s a recessive condition, it takes two of these carriers getting together to produce a child with SMA. Even then, only 25% of children of those unions will even have the condition.

If you are confused by this scientific explanation of recessive genetics, you weren’t fortunate enough to have had the late Mr. Eugene Field as a biology teacher at Patterson High School. I feel sorry for you if you missed out on his amazing greatness. I guess you’ll have to make due with looking it up on Wikipedia, instead.

Anyway, until very recently, a diagnosis of SMA was practically a death sentence. While advancements in medical care have allowed many of us to beat the odds and thrive long into adulthood, there was really nothing science could do to treat the condition itself. But, that is changing. For the past year, I’ve been receiving a gene-splicing treatment called Spinraza that boosts my production of a protein that my body is lacking. I’ve written extensively about my treatment journey on this blog. I’m happy to report that more treatments for SMA are on the horizon in the coming years, too.

Awareness months, like this one for SMA, serve an important purpose. They garner attention to the cause and provide a catalyst for fundraising. Many other medical conditions and diseases have their own awareness months, too. I’m sure many of you have taken part in such events. And that’s fantastic. After all, these are vital tools for generating donations for research. But, while raising money for a “cure” is very important, we mustn’t forget that we have to also support those living with these conditions, too.

We have to make sure that there are services and infrastructures available to help those currently living and fighting these conditions— and their families. As someone on the other side of this, I must say that I occasionally cringe a little when I see so many fundraising efforts with simple, pithy titles about running and walking for cures. Sometimes I feel like they miss the point. After all, before we can get to the moment when someone could possibly be “cured,” there will be a lot more time spent with the person needing support and helpful resources.

Let’s be honest, from a practical point-of-view, a “Walk for a Cure” isn’t really going to do a patient much good if they don’t have a way to get to their doctor appointments. Let alone if they don’t have personal care assistance in their homes or even nutritious food on their table.

And, I don’t mean to be a killjoy, but you know that 5k Run for Cure you did last year? The one where you wore those new $85 running pants from Lululemon? Yeah, that run is probably not going to help that rural woman in Kansas afford the pharmacy copay on the anti-nausea pills that she needs during chemo.

I don’t mean to imply that these fundraising efforts are useless. Nothing could be further from the truth. These events and funds are incredibly important. So, keep on running in your crazy expensive stretchy pants. But, while you’re doing it, remember that there’s more that we can do.

Awareness means more than a “cure.” It’s about living in community— together. Helping each other. Whether it’s August, or any other month of the year.

Until then, Happy August… and happy running.

xoxo

Happy Spinrazaversary to Me!

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One year ago, today, I had my very first spinal injection of Spinraza— the first-ever FDA approved treatment for my disability, Spinal Muscular Atrophy (SMA). Life was a lot different one year ago. First of all, I was worth a hell of a lot less money at that point. My spinal fluid didn’t have 6 vials of super-sonic, super-expensive Spinraza floating around inside of it. You know, the way the miniaturized Dennis Quaid floated through Martin Short’s body in the 80s movie, Innerspace? One year ago, I was a body that was decidedly pre-bionic. Dennis Quaid’s tiny spaceship would not fly out of my nose if I sneezed. Now, however, I wouldn’t be surprised if my boogers had diamonds inside. Yes, I’m that pricey now.

As I have shared here previously, it was a long, hard-fought battle to gain access to this drug, and I’m lucky to have a spectacular medical team at Stanford Neuroscience that helped to make this possible. I wish I could say that all adults with SMA have such outstanding advocates for care as I do. But, we still have a long way to go to make this current treatment, and all the upcoming treatments coming down the pharmaceutical pipeline, available and accessible to all those living with my rare, genetic condition.

But, my Spinraza journey didn’t end at the point of that lumbar puncture needle one year ago today. Rather, it really had just begun. Given the complexities of getting the long needle through my crooked, and fused anatomy, each injection since that July day has been a tiny battle of wills. A mental and physical game where I prepare like a seasoned warrior. A soldier that knows that the upcoming battle could be a smooth victory just as easily as it could be a giant shit show. You know, like a Trump/Putin press conference?

However, these hardships (and there have been many!) have been worth it. In the 365 days since that magic vial’s liquid have begun to do their work, I have had measurable improvements. Given that this neuromuscular disability is progressive, even merely slowing or halting the natural deterioration is a victory. To have improvements, like I have seen, is more than I could have hoped to achieve. Especially as an adult with SMA. I had never thought I’d live to see a treatment that could help me. It’s hard to mentally process… to put your brain around. You know, just like it’s hard to process pickle-flavored ice cream, self-driving cars, and why the hell we Americans can’t figure out the metric system.

I look forward to what the future holds for my Spinraza journey, yet, I eagerly anticipate what medical science has in-store for those of us, of all ages, with SMA. I’ve heard that there are more treatments currently in the trial and research phase. Perhaps, one day, I will have additional cause to celebrate.

Until then, if I sneeze, please excuse the diamonds.

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All The Things That Sizzle

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Summer is now officially here. For the next three-odd months, we’ll have plenty of time for backyard barbecues, fresh locally-grown produce, and oodles of opportunities to get a sunburn. I am one of the lucky ones that gets burned by simply thinking about the sun. For example, just reading an article in National Geographic about solar radiation is enough for me to get a second-degree burn. I wish this wasn’t just hyperbole.

While my pasty, sensitive skin is a major reason why I dislike the summer, the heat we experience in Patterson is the primary source of my disdain. It gets crazy-hot here. And, for someone in a wheelchair like me, it’s just not pleasant. Frankly, it majorly blows. My black-seated electric wheelchair is like a damn beacon for heat— the summer sizzle zeroes down upon me like a missile. You know, like one of those nuclear warheads that Kim Jong Un promises to get rid of but everyone knows that he never will? Yeah, just like that.

The wheelchair also traps heat—once it enters the perimeter of my seat, it just doesn’t fucking leave. It’s like living in one of those Insta-Pot pressure cookers that everyone has been raving about for months. If I’m in my wheelchair out in 100° weather, it won’t be long before my ass turns into a perfectly-cooked pork tenderloin. I wish this was an exaggeration, too.

Despite all my negativity about this season (of which I have a lot, as you can tell!), there are some redeeming things about this time of year. First of all, I like that cold and flu bugs go into hibernation in the summer. As I’m a germaphobe, this is a big relief. I fear getting sick the same way that some people fear a giant asteroid hitting the Earth at 25,000 miles an hour. And, no, I’m not being dramatic. If you’ve been following my writing at all, you shouldn’t be surprised by this statement. So, YAY to summer! It’s definitely wonderful that at this time of year I don’t have to worry about catching the flu while shopping for laundry detergent. It makes the idea of having clean clothes way more enticing.

While this is a major reason I tolerate the heat of the summer, the biggest redeeming factor of this season? All the yummy local produce that becomes available. We are so fortunate to live in one of the most fertile agricultural regions in the world. Our markets burst with wonderful things to eat. So, take advantage of it. Buy locally-grown produce when you can. Visit farmer’s markets. Enjoy all the things that truly put Patterson, and this region, on the map.

It will make these long summer days all the more tolerable.

So, stay cool, stay healthy, and happy summer!

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Mondays, Angry Drivers & Getting to #6

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Some Mondays can exist on their own cosmic plane. An alternate reality where weird stuff happens more frequently than other days of the week. It’s a day for hangovers, short tempers, and trying to get all the things done that you should have done over the weekend — if you hadn’t been rewatching the latest season of The Crown while still wearing your pajamas. By the way, Princess Margaret would have definitely approved of pajama-wearing after 2pm. Her sister, the Queen, however? Not so much.

Earlier this week, I had one of those Mondays. It was the day of my 6th injection of Spinraza and I went into it primed, pumped, and ready. But, the signs presented fairly early on that day that things were gonna be just a little bit weird— like a Kanye West interview.

The drive to Stanford is always arduous— and traffic-ridden. With the number of cars and trucks that are trying to push through the freeways from the Central Valley to the Bay Area, it’s like trying to pass a rump roast through a shower drain.

It always amazes me that so many folks make this long commute on a daily basis. It boggles my mind. I’d have a serious mental breakdown if I had to do that. The kind that would make me unable to enjoy the mythical 4,000 square-foot suburban house that I could maybe afford, but never have time to live in.

On this particular Monday, the traffic, surprisingly, wasn’t too bad— meaning that it was only moderately heinous. You know, like rice cakes or gender reveal parties for unborn babies. It was tolerable, but not something you’d voluntarily go out and do.

Anyway, despite the flowing traffic, the mood of the drivers was decidedly grim. And, frequently, downright hostile. Dozens of horns were honked. Many cars were aggressively passed. And a slew of motorcycles were cutting off cars at each opportunity. There was more tension on that freeway than in the last episode of The Bachelor.

A case of the Mondays was in full-form.

We arrived to the Neuroscience building earlier than expected (shockingly!!), and the nurses took me back to the room to prepare for my lumbar puncture. It wasn’t long before one of the doctors came to go over the last details of the procedure. Given that Stanford is a teaching facility, they work in pairs— an attending (teacher) with a fellow (student). There’s also no way of knowing which doctors will be on duty on a particular day, either.

Having a lumbar puncture is always a tricky business, but when you have complex anatomy, like me, it’s even more precise. I lay on my side and they use a fluoroscopy machine (like an x-ray) to monitor their progress as they move the five-inch needle around my spinal rods and into the small space in my vertebrae to access my spinal fluid— where the Spinraza must be injected. It’s like a playing a game of darts in a really sterile bar— only the target is me, and I’m awake and not a cork board.

Given this complexity, there are lots of factors that can determine how quickly and easily the procedure will go. The experience of the doctor. My position on the table. And, frankly, a good amount of luck.

The fellow (student) worked the needle into position in my spine and all seemed okay… but, the spinal fluid wouldn’t drip out the needle (how you verify that you are actually in the right spot).

Remember when we talked about the Mondays? Yeah, well, it wasn’t finished with me, yet.

The fellow readjusted the needle, back and forth. In and out. Making small centimeter-sized adjustments to try to yield the spinal fluid. But, it WOULDN’T FUCKING COME OUT.

Meanwhile, with each move of the needle, tiny nerve pains were boomeranging around my back and hip. They even tried tilting the table so that gravity might help the fluid to dribble out.

But, no, it didn’t work. Isaac Newton’s Law of Gravity was a piece of shit. I don’t care what they teach us in physics class— it doesn’t always work. Especially in the alternate reality that is a Monday.

After this went on for a while, the attending doctor (the teacher), pushed aside the fellow (the student) and proceeded to give it a go himself. Frankly, if Isaac Newton had been in the procedure room in that moment, the attending doctor might have kicked him in his 17th century balls. A few minutes later, though, he was finally able to get it done. Gravity be damned.

I was so relieved. And so were the sore muscles in my shoulder, and the nerves in my hip and back. I daresay even both doctors were relieved.

About an hour later, I was back in my wheelchair and ready to load up in the car for the ride home. Just as we were opening the doors to my van, another vehicle with a disabled placard began aggressively revving their engine behind us, trying to hurry us into leaving the parking spot so they could take it themselves. It reminded me of all those angry folks on the road from earlier in the morning.

Then, a few seconds later, the driver rudely waved at us— as if hand gestures were like spells from Harry Potter that could magically make me load up into my van, strap me (and my wheelchair) securely inside, all in five seconds.

My friend, Edith, that had accompanied me on the trip, raised an eyebrow as I drove my wheelchair up my van’s ramp, “I think we need to make this car-loading-up thing take much longer than usual. What do you think?

I grinned, “Oh, yes.

Fuck Mondays.

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1990: Revisited

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With the passing of Barbara Bush earlier this week, the news has been awash with memorials of her life and the presidency of her husband, George H.W. Bush— or, as I not-so-secretly call him, “Old Man Bush.” I realize that calling the 41st president by that moniker sounds ageist and mean, but given we had another president with LIKE EXACTLY THE SAME NAME, how else am I to differentiate the two?? I suppose, in some ways, though, it’s better to be “Old Man Bush” than it is “Little Bush” — which is what I called his son.

Anyway, in all honestly, my recollection of the years when George & Barbara Bush lived in the White House are decidedly hazy. I was only around 8 at the time, so anything that wasn’t in the shape of a Lego really didn’t interest me. But, nonetheless, I do have vague flashbacks of Barbara with her shock of white hair and her bright suits the color of a Troll doll’s hair. Seriously, those suits were bright.

I bet she even glowed in the dark.

You know… it’s easy to imagine George and Barbara playing hide-and-seek in the White House. ‘Cause, if anyone were to do it, it would probably be those two lovebirds.

Bar, ready or not, here I come!” A few minutes of scrambling later, and then you’d hear George exclaim, “Come here, you saucy minx, I can see you glowing all the way from the Lincoln Bedroom!

Anyway, I do remember Barbara’s literacy programs in my elementary school, but as I was a certifiable bookworm already, Barbara was truly preachin’ to the choir with me. I don’t think it was possible for me to read any more books— after all, I had already made my parents broke by forcing them to buy me the entire series of The Babysitters Club. (I wish I was kidding.)

But, despite my early ambivalence to politics, I do remember one landmark moment during the presidency of Old Man Bush (sorry, I still can’t seem to help myself). It was that moment in 1990 when George signed The Americans with Disabilities Act (ADA) into law.

I didn’t know it at the time, but that legislation had been a long time in coming. Many disabled activists had endured many trials and hardships to make that moment possible. Even though I was young, I could still feel the importance of that revolutionary document. On the news that day, I saw folks in wheelchairs at the White House sitting next to the president. I had never seen that before. They were people like me. (Although, in all honesty, they were mostly male and super white. At the time, of course, diversity was an unnecessary concept, not an actual reality. You know, like women CEOs and food allergies.)

The ADA would nonetheless go on to shape the civil rights movement for disabled people all over the world. It was a giant leap forward for accessibility, inclusion and equal-access. But, as amazing as the legislation was, it’s still an imperfect document. It has loopholes, exclusions, and falls short in various areas that could further improve the lives of people like me. So, I can say without hesitation that we still have a long way to go. There are still many barriers that must fall.

Despite this, there has been a movement recently to try to erode away some of the protections of the ADA. Earlier this year, the House of Representatives passed H.R. 620, a bill misleadingly named “ADA Education and Reform Act of 2017.” By removing the reasons for businesses to proactively comply with the ADA, H.R. 620 attempts to chip away at the rights of a disabled person to fight for the removal of barriers to access. It makes it more difficult, and nearly impossible in some cases, for an aggrieved disabled person to seek accommodation. Nonetheless, the shitty bill has moved on to the Senate, where it sits right now.

With the passing of Barbara Bush, it’s made me reflect on that moment when her husband first signed the ADA. Often more vocally progressive than her husband, I’m sure that moment in 1990 brought Barbara much pride.

Now, all these years later, we shouldn’t be looking to scale back the ADA, we should be working to expand it. Time marches forward, after all.

Unless you can’t walk. Because then you might not even be able to get in the building.

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(Old Man Bush signing the ADA in 1990. Photo via Associated Press)

Alexa Saves The Day

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When you’re disabled like me, technology is interwoven into the very tapestry of our everyday lives. While most folks can’t set aside their addictive iPhones long enough to take a shit, at least those devices aren’t hinges of mobility. Tools of survival.

In order to fully function, our gadgets must be in complete synchronicity… like an orchestra playing well in tune. If one instrument goes awry, the whole concert could be a total flop. Like Lady-Friendly Doritos or Kevin Spacey’s career.

I’m not a novice when it comes to technology fails. Just weeks ago, I grappled with a wheelchair shutdown that, while eventually resolved, led me to have anxiety for nearly a fortnight. I’m glad to have that behind me, but the delicate balance of our disabled, gadget-rich lives always teeters on the edge of the precarious.

This morning I had one of those moments. When the balance shifted decidedly out of my favor. It was an ordinary day and I was doing ordinary things. Drinking my late-morning coffee. Attending to various tasks. When suddenly, the perfect storm happened.

My dominant arm, which I use to support myself, fell out of place on the armrest. This, in turn, caused my chest to topple forward and my neck to get thrust down. Often, I’m able to extract myself from the situation with various wheelchair maneuvers. Like gunning the throttle to thrust my body backwards. Or, shoving my chest up against a table. But, this time it all went spectacularly wrong.

When I attempted to push my chest backward against a high table, my arm slipped further and activated my wheelchair’s tilt seating system so that it lowered and pinned me against the table. Unfortunately, my arm was stuck on the tilt button, keeping it activated and running, even though it was fully lowered. When the tilt is activated, the wheelchair is immovable, meaning the control box was useless. Meaning I couldn’t reverse myself to reach the iPhone that was resting on my lap. Meaning that I couldn’t text or call for help.

I was well and truly fucked.

I began to panic as the seconds ticked by… and the seating tilt motor ground forward in an endless mechanized rhythm. I couldn’t get it to stop. I knew that if it continued for an extended period of time, I could burn out the electronics.

While you might think that I was most concerned about my own current discomfort, no… alas… I was thinking about my wheelchair. And how disastrous it would be if the tilt system went kaput.

The panic grew overwhelming, and my breathing grew labored in the awkward, cramped position I was in.

Although I was currently alone, I knew someone would be popping in within the next hour. But, I didn’t think my panic or my seating system tilt mechanism would last that long.

All sorts of crazy thoughts were accelerating through my head like a runaway locomotive… or those commuter trains that always seem to be derailing in movies starring Denzel Washington.

How long will I have to wait here?

How much would a new tilt cost?

Will the insurance pay for it?

Will it take weeks to be fixed?

What if I panic and die?

What if I panic and die while Donald Trump is still President?!?

I was a righteous mess. I tried to calm myself. Stop the pounding heartbeat I could hear inside of my head.

And then, I remembered it.

ALEXA!

My Amazon Echo Dot (similar to the Google Home Mini) was perched 8 feet away. It had been given to me by NMD United, a peer-run non-profit organization that serves adults with neuromuscular disabilities. It’s voice-activated tools are extra helpful to those of us with mobility issues.

It’s always just waiting to do helpful things… like tell me the weather forecast, play me songs by Katy Perry… or… call people for me!

I called out, “Alexa, call someone!

She replied, “Who do you want to call?

I began to grow irritated, “I don’t care!”

Donna Karan is not in your address book.

ARGH!

I pulled myself together, “Alexa, call 2, 0, 9, 6…..

After a pause, she asked, “Would you like me to call Daddy Cell?

Yes!!!” I exploded.

When the Echo Dot began to ring and I heard my dad’s voice answer, I collapsed against the countertop in relief. I think I even drooled a little.

I’m thankful to say that my dad arrived before any noticeable damage was made to my wheelchair. Although, perhaps time will tell on that front. Luckily, even though it felt like an eternity on my end, I think the entire episode only lasted about 10 minutes. And I’m doing A-OK now.

Technology is a fickle, fickle business. And our hold on it is incredibly tenuous. But, sometimes, when one aspect fails, another may save the day.

Thanks to Alexa.

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Test Anxiety

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No one likes tests. Whether they’re in school, at the doctor, or at the DMV— they are generally un-fun. You rarely hear someone yell, “Yay, a test! I’m SO happy.” If a person did say that, you’d probably question their mental stability.

For a lot of folks, tests bring out an anxiety— a stress to perform well, which, ironically, is made harder by the stress itself. It’s a terrible Catch-22.

I have to do well on this test or I’ll never go to college!

I have to pass this exam or I can’t get my license!

Will that marijuana I smoked a month ago show up on this urine test!?

As a worrywart, high-achieving student, I generally would experience some anxiety before tests, especially the big exams— like the AP test, the LSAT, and all those personality tests on the internet. I’d fret for days beforehand, wondering how it would all turn out. Would I score well enough on the LSAT to get into law school?… Would the online test sort me into Hufflepuff or, worse yet, Slytherin House?!

These thoughts would consume me.

It shouldn’t be surprising that when it was time for me to have another evaluation to check my progress on Spinraza, I worried about it. A lot.

While I had felt positive changes, and experienced measurable improvements previously, would it still translate to results this time?

It was a question that loomed over me… like the Hindenburg right before it exploded.

I’m sure reading this, you’re probably thinking, “Girl, calm down. Don’t stress. Just do the best you can.

I wish it were that simple. Given the high price tag associated with nusinersen treatments, there are many insurances and government agencies that are looking to limit who has access to the drug. They want to put parameters on who can get it and who can’t. And a major factor they are looking at is age.

As an adult in my thirties with Spinal Muscular Atrophy, I am considered old. Not old in the way that Betty White is old, but at least old in a moderate way… like Jane Fonda or Donald Trump.

While there aren’t THAT many of us that have lived this long with SMA, there are still plenty of us adults out there that need access to this drug. So, we have to continue to prove that this treatment works for adults. That it produces results.

That’s a lot of pressure. Especially for something that a person can only do SO much about. I can do stretching, breathing exercises, and increase my protein to help things along, but that’s about it. I mainly have to see if the magical Spinraza droplets do their work.

Leading up to my evaluation at Stanford earlier this week, I was very anxious about it. On the drive over, I listened to the Spinraza mixed CD I had made and tried to gear myself up. It worked pretty well… after all, track #2, Eye of the Tiger, is always a solid choice.

Upon arrival to the Neuroscience Center, I only had time to inhale half of a tuna sandwich before they called me back to begin my evaluation. The next three SOLID hours passed in a blur of respiratory and physical therapists, nurses, research assistants, and stress sweat (good thing I put on extra deodorant!).

I wasn’t finished with one test before another person was hovering nearby to begin the next. I didn’t even have time to eat my homemade graham cracker and peanut butter sandwiches. (And you know how much I love peanut butter!)

The grueling afternoon reached its peak when the physical therapist asked me to open up one of those clear round Ziploc containers with the blue lid. Previously, I hadn’t even been able to attempt this task. Not even close. But, this time, I felt that I might be able to do it. I pulled, groaned, heaved, and nearly cried. But, after five minutes of desperately trying (and nearly doing it), I ran out of steam. I felt defeated. And pissed off. I told the PT, “I’m gonna buy one of these fucking containers and practice this at home. Next time, I will do this.

Yeah, I’m that kind of person.

While that moment was very disheartening, I’m happy to say that my results showed some improvements. I was able to lift a cup with a weight inside all the way up to my mouth. The strength in my arms and hands increased. And, lastly, but most awesomely, there’s a respiratory test that measures the diaphragm muscle. Before Spinraza, I got a 50. At this evaluation, I got a 72.

By the time all of this was done, I was exhausted. I wanted to curl up in bed with hot chocolate and watch TV forever. All the shows. Even the stupid ones on Bravo… Like The Real Housewives of Beverly Hills.

Thankfully, I get a little break now. I don’t have to head back to Stanford until next month for dose #6. I’m looking forward to the respite… and the break from all these tests.

Although, if I get bored, I’m sure there is a personality test online I can find. Like… If you were a dog, what breed would you be?

A border collie. Definitely.

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