A Germaphobe’s Guide to the Holidays

Standard

I love everything about the holidays. The music. The food. The carbs. The festive spirit that makes even the dumbest Hallmark movie seem quaint and charming. While I eschew The Hallmark Channel for the other 11 months of the year, for these few weeks, I tolerate the weak plot lines, terrible acting, and the tons of synthetic snow they import from China. I suspend my cynicism and convince myself that this stuff is A-OK— you know, just like Matt Lauer did with his overactive penis.

Anyway, while this season heralds many wonderful things (the extended holiday selection at Starbucks being one of my particular favorites), not everything about this time of year is so great. Yes, I’m talking about all the cold & flu viral cooties that float around faster than Hallmark’s plastic snowflakes. For the average person, this is only a minor annoyance. Perhaps some sniffles here and there, and odd sick day from work. Nothing that Tylenol Cold and a shot of whiskey can’t handle.

But, for someone with spinal muscular atrophy, like me, a minor cold can turn into fucking Armageddon. Like the kind with Bruce Willis and that damn asteroid. Or the kind that wipes out all the dinosaurs on Earth—except for Barney… and Larry King.

So, to call me a germaphobe would be a vast understatement. It would be like calling Einstein merely ‘clever’ or saying that Donald Trump just ‘somewhat likes’ using hairspray.

I am a full-fledged germ freak. If I hear someone cough or sneeze, my ears suddenly morph into the radar of a Navy submarine. I quickly determine the distance between me and the sick person, and if I need to undertake any evasive maneuvers like Sean Connery in The Hunt for Red October. I will burrow into the ocean floor if need be. Don’t think I won’t.

If they’ve done something especially stupid, like cough directly into their own hand (instead of the crook of their elbow), I’ll glare at them maliciously while I catalogue every surface that they touch with their virus-ridden hand.

Yes, I really am that bad.

And, yes, it really is stupid to cough or sneeze into your own hand. You should always cover your face with your arm, instead. Less chance of spreading the virus to others.

Anyway, given the respiratory weakness of those with SMA, it is very difficult for us to keep our lungs clear. It is harder for us to cough. Harder for us to blow our nose. So, the drainage that might only be an annoyance to you, can become dangerous to a person like me. It can settle in our chest and potentially cause serious issues.

If I do get sick, I have to be very diligent. I vigorously use my respiratory devices (BiPAP, nebulizer, and CoughAssist) to prevent any complications. Under the best of circumstances, it can take me at least 10 days to 2 weeks to get over a mild cold. More serious illnesses can knock me out for even longer.

As happy and joyful as the holiday season is for me, it can be difficult, too. To the average person, an invite to a holiday cocktail party is immediately accepted. After all, who doesn’t like eggnog and a free selection of crackers and salami?

But, for me, deciding to attend the party would be a gamble. Like playing Russian Roulette or marrying a Kennedy. As much as I love eggnog (which, I do!), I must weigh that against the fact that at least one or two dipshits will probably attend the party even though they are sick and should stay home. Do I want to risk that they won’t sneeze near the salami? Do they know how to properly wash their hands?? What if they actually try to hug me???

Oh, the horror.

This kind of analysis runs through my head with every holiday invite that I receive. Before accepting anything, I quickly consult my calendar to make sure I have nothing important to do for the following two weeks after the event on the off-chance that some fuckhead gets me sick.

You can imagine why it might be easier for me to sit at home this time of year and watch badly-written Hallmark movies, instead. Fake snowstorms are far more palatable than hacking up part of a lung.

Nonetheless, it also isn’t healthy for a person to hide away in their house like the Unabomber. So, I try to venture out from time to time… armed with plenty of Purell, of course.

But, if I turn down an invite to your holiday event, please don’t take it personally. This doesn’t mean that I don’t like you, or that I hate salami… or eggnog. It just might mean that I’m worried your other guests might be carriers of the bubonic plague or some other horrible disease.

So, yeah… nothing personal.

Happy Holidays to you all!

xoears2

Advertisements

Nutcrackers, Holiday Decorating & All The Lies We Tell

Standard

Around three weeks ago, I was in a store and holiday music was already playing. Even though I snorted in disgust at the prematurity of it all, that didn’t stop me from admiring a collection of miniature Christmas trees roughly the size of Kevin Hart. You’ll be happy to note that I didn’t buy one, but I seriously considered it.

That set my mind into motion— into thinking about the holidays and when I’d put up my own decorations this year. I always tell myself that I’m going to wait until after Thanksgiving, but that never seems to happen. It’s more what I tell other people if they ask me when I put up my Christmas decorations. I always chirp, “Oh, I wait until after Thanksgiving.” But, in reality, I’m secretly hunkering down in my house around November 15th with empty nutcracker boxes strewn all over my dining room table and a rim of peppermint mocha residue around my lips.

It’s one of those secrets that we all keep and then lie to others about. You know, like how many times a day we floss (which is never), how many times a week we empty the lint compartment in the dryer (which is not enough) and if we wash our hands after we blow our nose (which should be all the time, but never is!).

When you are disabled, like me, you have to rely on others to help you put up your Christmas tree. You have to cajole and charm someone into climbing into the recesses of your garage to pull out the 7.5 foot plastic tree crammed in a cardboard box large enough for Kim Jung Un to stuff at least two dead bodies.

I’ve had the same artificial tree for quite a few years now. I don’t like having a real tree. It’s too much commitment. I have a hard enough time remembering to water my two houseplants, I definitely don’t have time to attend to a needy spruce tree. Plus, I don’t want something that will drop needles and crap all over my living room floor. If I wanted that, I’d just borrow a toddler.

Each year, there’s always a big moment of dread right before turning on the Christmas tree lights for the first time. That sinking feeling of wondering if this will be the year that it finally takes a giant poop. I’m sure I don’t need to describe this feeling any further. After all, if you’re a San Francisco 49ers fan, you feel this nearly every week.

Anyway, the last couple of seasons, my tree had begun to show its age. The lights began to dim, and large segments of the tree would randomly go dark, only to perk up again hours later. So, this week, I decided to take the plunge and get a new one. My new tree seems okay so far, but the branches were so smashed from being in the box on the long journey from China that the branches required considerable fluffing to stop them from resembling large marijuana joints. I suppose that’s one benefit to real trees, though— they are already fluffy.

However you may spend this holiday weekend, have a safe and happy one. If you need me, I’ll be here fluffing my tree, consuming large quantities of stuffing, and canoodling with my nutcrackers.

IMG_4507 (2)Happy Thanksgiving!

Margaritas & How To Stalk A Physical Therapist

Standard

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.

IMG

Elizabette Does Tinder

Standard

I like to be hip. I like to be cool. I like knowing the latest lingo, the ‘words on the street’— you know, like baesnatched… and I-Hope-Harvey-Weinstein-Gets-Ebola-And-Dies.

Stuff like that.

I also like to be in-the-know about technology. I want to know about the most recent apps, smartphones and those little fancy robots that run around your house to vacuum up all the Pringles crumbs you left on the floor after your latest Netflix binge. These things are important. And I must know them.

If I don’t know how something works, I feel like I’m missing out— like that one time I wanted a Polly Pocket for Christmas in 1991 and didn’t get it (even though ALL my other friends did). So, this “fear of missing out” leads me to want to try new things. But, this isn’t always a good thing.

For example, a few years ago, I tried watching Game of Thrones. Everyone had been raving about the show… It was a phenomenon unseen since Michael Jackson moonwalked across that stage in 1983 (before he got creepy). So, I borrowed a disc of the first episode of the hit HBO drama, put it in my DVD player, and hit play.

And I lasted about 17.5 minutes before I turned the damn show off.

Holy shit, I have never seen so many decapitations in such a short amount of time.

I mean, I had NO idea what was going on in the plot or who the hell those headless people were, but I had already seen too much of their blood gushing from their spinal column. It’s important to note that I have to be more invested in my characters before I’m willing to see their bodily fluids shooting into the air like the Yellowstone Geyser. And 17.5 minutes is not long enough for that to happen.

Anyway, my experience with Game of Thrones taught me that perhaps all trends aren’t always great. Not all bandwagons are worth climbing on.

The other day, was looking at the App Store on my iPhone looking for a new game to download. Near the top of the most popular list was the social/hookup/friendship/relationship app Tinder. I had heard of Tinder, but really had no idea how it actually worked. My interest was peaked. If it was at the top of the download list, it was worth learning about. I would be one of the cool kids! I would be in-the-know. It would not be like the Polly Pocket incident of 1991.

So, I downloaded the app and set up an account. A person can add a couple photos and write a really brief bio of themselves or their interests. The app then shows you the profile of folks within a 50-mile radius. You swipe to the right if the person seems interesting— you swipe to the left if the person isn’t your cup of tea. If you and another person both swipe to the right, it’s called a “match” and you’re able to type a message to that person (if you want to).

It’s a very simple premise… One quick decision. It’s like cleaning out your closet. Do you want to keep that old Green Day t-shirt, or throw it away? Dump the shirt in the trash? Swipe left. Keep it to see if you might wear it when you need to clean the shower with bleach? Swipe right.

So, I started playing the game. Err— I mean, using the app. It’s very fun and addictive. About 95% of users are trying to impress folks with their gym selfies (why must you stand in front of a mirror each time, dude?)… their sky-diving photos… and their motorcycle portraits. Swipe left. Swipe left. Swipe left.

As fun as it was at first, after a few hours of using the app, I very quickly found myself becoming increasingly judgmental in real life.

At a gas station, I began commenting on someone’s questionable parallel parking ability. Swipe left. Then, I criticized a guy for wearing a baseball cap with the sticker still on the bill. Swipe left. I rolled my eyes when a friend on Facebook used your instead of you’re. Swipe left. At a restaurant, I inwardly cringed at a lady for her unflattering hairstyle. Swipe left.

I was out of control.

I quickly realized that it was Tinder that had turned me into an intolerant and heartless version of myself. If I wasn’t careful, I’d turn into something really horrible. Like an Olsen Twin.

Enough was enough. So, after having the app on my phone for a grand total of 47 hours, I deleted it.

There are some trends that just aren’t worth it.

IMG_4445

Hurricanes, Pregnant Pandas & Kardashians

Standard

It’s been an intense 9 months. Between qualifying for the nusinersen treatments, waiting to get the ‘greenlight’ to begin injections, and then enduring the hectic schedule of getting my first four loading doses, it’s been a crazy ride. While Hurricane Spinraza was slow to arrive, it gained speed at the end and has packed quite a wallop. A positive, encouraging wallop… but, a wallop just the same.

Perhaps it’s too soon after Harvey, Irma, and Maria to make hurricane metaphors— but, I’m going to do it, anyway. If President Trump can pitch paper towels into a crowd of desperate Puerto Ricans like a carnie at a state fair, I guess anything goes.

Physically, receiving these injections isn’t easy. There’s discomfort, soreness, — and yes, sometimes pain— from the actual treatments themselves. There’s the exhaustion from the long traffic-ridden drives to and from Stanford. It’s a physical challenge. Surprisingly, though, an additional improvement that I noticed after beginning my injections? My residual soreness/pain resolved itself more quickly with each and every treatment. My body felt just a little tougher each time.

Despite the physical challenges, very few people discuss the emotional challenges of this Spinraza journey… especially for those of us that have lived with spinal muscular atrophy all of our lives. So much energy, especially by medical professionals, is focused on our physical health, that our emotional health can be neglected. But, these needs are just as important. The last nine months have taught me that.

Those of us with SMA are expert jugglers. We balance many things in our lives… work/school, family obligations, friends and the management of our care needs— all while keeping track of the pregnant Kardashians. Which is seriously hard work. I keep waiting for one of the reality stars to put up a live pregnancy camera in their house. You know like the zoos do when they have a pregnant female panda? And everyone livestreams the zoo camera online in the days leading up to the birth in the hopes of catching a glimpse of the pink squirming glob that comes out of her panda uterus?

Yeah… that.

(Think of the ratings, Kris Jenner… just think about it.)

Anyway, we SMAers can handle a lot. It’s challenging to juggle our usual tasks— but, we do it. Because we have to. But, when you add in the giant, heavy ball that is Spinraza, it’s impossible for us to keep all the other stuff in the air without dropping some shit on the floor. This is unfortunate because I literally can’t pick up any of the shit I drop on the floor. I have to wait until someone comes and picks it up for me.

After my last loading dose, I physically and emotionally crashed. I went into hibernation— like one of those mama bears that Sarah Palin rattles on about. For about a week and half, I didn’t want to do ANYTHING. I wanted to drop all my juggling balls and sit in the corner and watch episode after episode of the Gilmore Girls. Because if anyone could fix my problems, it was Lorelei Gilmore.

So, I wallowed. And stewed. And fretted. And took some Xanax.

This went on for a while. But, then it started to fade away. I felt the muscles quivering in my arms— reminding me that I had $500,000 swirling in my spinal fluid. It was time to get to work. I had fucked around for long enough.

I started exercising my arms, wrists and hands— with stretches and small weights. I began lifting things more easily than I had done in a while. While in the car, I held a water bottle to my mouth and drank (without a straw!). I lifted a one-pound bag of dried split peas from my lap to my desk— something I hadn’t been able to do at my physical evaluation at Stanford in February.

Things were happening.

So, now I’m trying to make these things part of my routine. I sit at my laptop (while I’m watching Netflix), and do my weird exercises. I’ve discovered that music isn’t my motivator… but, good o’ streaming TV does the trick!

Just maybe not a live Kardashian cam…

There’s only so much a person can handle.

striped

xoxo

(Please “follow” my blog for more updates…)

Fully Loaded

Standard

My Spinraza journey has been one of highs and lows. I’ve had laughter and joy— but, also some tears and anxiety. It’s been a whirlwind of emotion that has frankly surprised me. If my journey were a story, I’d say that each injection introduced a new plot twist. You know, a plot twist like a long-lost, evil twin brother in a really good telenovela? Or, a sudden beheading on Game of Thrones? Or the content of a press conference at Trump’s White House? Because, in all those examples, where you think the plot is headed is never where it ends up.

Earlier this week, I had my fourth, and final, loading dose of Spinraza. After these initial doses, I will just have to return to Stanford four times a year for a single dose to maintain the level of drug in my body. Like topping off a tank of gas. Only this gas is worth more per ounce than plutonium. Just don’t tell Kim Jong-un about this stuff. Knowing him, he’d probably try to fling a vial of it at Japan.

My dose last month went incredibly smoothly, as I documented here. I had a confident, gladiator doctor that had the needle in the target zone so quickly that I thought he was joking. After all, it ain’t easy to negotiate the long lumbar needle through my spinal rods, even with the live x-ray guidance. So, this time, I figured that world-record speed would be hard to beat.

But, I was wrong. Upon arriving to the radiology department at the Neuroscience Center, I was informed that the A-Team was going to do my injection that morning. I felt a jolt of excitement. I get the same feeling when I get a coupon for 25% off at Bath & Body Works.

When I met the doctor, it wasn’t Mr. Gladiator… Rather, it was like if Dr. Meredith Grey had suddenly developed an undetermined-European accent and appeared at my bedside. Her friendly smile and slightly wavy dark blonde hair were straight from one of my favorite TV shows.

She was calm, capable and prepared. And she had the needle inserted so quickly that I didn’t even feel one damn thing. Like nothing. Not a twinge. Not a zing. Like Robert Redford was to Horse Whisperers, she was to lumbar punctures. She was the Lumbar Whisperer. I think she should put that on her business card…

Doctor. Neuroradiologist. Lumbar Whisperer.

It has a nice ring to it.

It wasn’t long before I was ushered to the recovery area. Feeling so relieved to have the injection complete, I quickly guzzled some water and an entire caffeinated Mountain Dew to ward off any potential spinal headache. (Spinal headaches are a very common side effect of this procedure— and caffeine and hydration can help prevent it.)

It was all going swimmingly… until the nurse returned to take my blood pressure and the numbers too closely resembled the final score of a record-breaking NBA basketball game. The excitement and caffeine had hit my bloodstream like a locomotive— and my blood pressure proved it.

They told me to relax, which is the one thing that is impossible to do when you’re a hypochondriac like me. If you tell me to relax, the exact opposite thing is going to happen— I’m going to panic.

My palms began to get sweaty and I became convinced that I was going to have a stroke and die— taking my expensive plutonium-loaded spinal fluid with me to the grave.

They observed me for over 45 minutes, waiting for the blood pressure to reduce. Which, of course, it didn’t. How could it when I had 4 sets of eyes watching me and telling me to calm down?

It’s no surprise that I began to cry. All the stress from the last few months— the waiting for the Spinraza, qualifying to get it, all the insurance hurdles, going through the discomfort of getting the injections… all of it… it hit me like a wave, pulling me under. I bet Trump gets the same feeling each morning when he wakes up and realizes he’s still president.

Soon after that, the nurse took pity on me and let me go home. My relief was enormous. I don’t remember much of the drive back home to Patterson— I was in a daze of relief, exhaustion and, yes, joy, too.

For you see, I had done it. I had survived my loading doses. I wouldn’t have to do another injection again for 4 months. It seemed like bliss.

Stay tuned, though, for more updates on my progress… I will be chronicling everything here (lucky you!). Most of all, thank you for your support on this journey… it has meant so much.

IMG_4377