Hurricanes, Pregnant Pandas & Kardashians

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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…)

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Netflix, Stones & Scones

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When I get bored, or if I’m a little sad, I like watching documentaries on my laptop about old, historical things— like English castles, Russian tsars and evil Nazis dickheads. It’s calming and therapeutic… yet, cheaper than Xanax.

Today, I stumbled upon a documentary about Westminster Abbey on Netflix. You know that big, old Gothic church that Prince William and his wife, Kate, got married a few years ago? Yeah, that building. It’s been around for nearly a thousand years… and it’s THE place to get buried if you are super cool and accomplished. There are kings, queens, princes, dukes and even scientists— like Sir Isaac Newton and Charles Darwin. There are scads of writers, too, including Aphra Behn— who, in the mid-1600s was the first woman to make a living as a novelist, playwright and poet. #oldtimeygirlpower

Westminster Abbey is also the place where the kings and queens of England are crowned. During the ceremony, the monarch sits on this really old wooden chair that was built in 1296. The chair still exists today. It’s survived generations of termites, vandals, and the really fat ass of King George IV, who in the mid-1800s spent most of his time eating large amounts of food and shagging women— all while being addicted to opium. He was a real winner. #momoneymoproblems

The chair was designed to house a special slab of stone beneath the seat. This slab is called the Stone of Scone. It’s important to note that the name has nothing to do with actual breakfast scones, much to George IV’s utter disappointment. Rather, the stone was the seat upon which hundreds of years of Scottish kings were crowned a really long time ago. In 1296, though, King Edward I of England took the stone from the Scots so that it could become the coronation seat for his many future, royal, and sometimes tubby, descendants.

As you may guess, this did not sit well with the Scottish. It didn’t take much to inflame their ire during this time, but stealing their favorite old rock was an easy way to do it. In between eating haggis, playing bagpipes, and drinking whiskey, the Scots stewed about this horrendous act for hundreds of years— even after the two nations joined together under one monarch. The English refused their many requests to have the stone returned— unwilling to compromise with the plaid-wearin’, brogue-talkin’ heathens to the north.

Fast forward 700 years. (I didn’t promise this would be a short story.) On Christmas Day in 1950, four Scottish students broke into Westminster Abbey with a crowbar and snatched the Stone of Scone from beneath the seat of the coronation chair. Okay, snatched might not be the best word for something that weighs 336 pounds. Rather, they dragged the stone out of the Abbey on an old winter coat and managed to secret the slab of rock across the border to an eager, and joyous Scotland.

British police vigorously searched for the stone for three months before the Scots finally relinquished the stone in time for Queen Elizabeth II’s coronation months later. The boys that took the stone were pardoned and details of the investigation were plastered all over the newspapers. Yet, each side still claimed ownership of the Stone of Scone and its history. Eventually a deal was reached so that Scotland could keep the stone for most of the time, except during coronations… every other Christmas, and the 2nd Tuesday of the month. Like a divorced couple’s joint custody arrangement of their 336 pound baby. It was all very complicated.

Strike that. No… no, it wasn’t complicated. It’s actually very simple. England and Scotland, two very advanced nations and pioneers in the development of representative democracy, were fighting over a FUCKING ROCK. A piece of goddamn stone that you can find in any riverbed, on any hillside… hell, even in someone’s weedy backyard.

See, this is why history is so awesome. And this is why I watch historical documentaries to make myself feel better. Because even if I’m having a bad day, a sad day, or I’m depressed about what’s on the 5 o’clock news, I know that we humans have done stupid stuff all throughout our history. The dates and years on the calendar may change, but our stupidity does not.

IMG_3927And there is definitely something comforting in that.

Don’t you think?

To binge or not to binge

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When you hear the word “binge” a certain image comes to mind. A troubled person indulging in large quantities of alcohol, food or drugs. In my case, it would be the pumpkin pie I obsessively eat from October to December each year.

The word “binge” actually means “to soak a wooden vessel.” It was important to binge a boat before sailing it, otherwise your voyage was doomed before it began – much like the Titanic, the Lusitania and Donald Trump’s presidency.

On a personal note, I actually know this to be true. My grandparents had an old wooden ski boat from the 1950s. If it wasn’t soaked or “binged” properly before taking it out on the lake, its ability to float was in question – making it a very stylish death trap.

Once, when I was 9, I was sitting next to my uncle John as he drove the boat. As the wooden boat started leaking in the middle of the lake, he threw me a teasing grin and remarked that the boat might sink. I still don’t think he was completely kidding.

In the mid-19th century, the clever chaps at Oxford decided to give the word another meaning. They began to refer to their alcohol-soaked shenanigans as “binges.” Thus, the word was granted new life.

Today, a modern use of the term has entered the English vernacular. It has nothing to do with booze, drugs or even carbohydrates. It’s about watching TV. Specifically, it’s about consuming numerous episodes in a row of a single TV show – for hours. Binging is sitting in front of your TV or iPad for so long that your pants begin to fuse to your butt.

Don’t pretend like you’ve never done it. The advent of the DVR and online video streaming services like Netflix have made this all the more common. It’s now socially acceptable to ignore life and sit in your pajamas all weekend and watch endless episodes of Grey’s Anatomy.

I recently discovered a great show on Netflix – BBC’s “Call the Midwife.” It has everything I love in a TV show – laughs, tears and snooty British accents.

To be frank, “Call the Midwife” is the reason you haven’t seen one of my columns in the Irrigator lately. A few weeks ago, the paper called me to see if I was available to write a column for that week. I lied and told them I was “super, super busy.” In reality, I wanted to scream: “LEAVE ME ALONE UNTIL I’M DONE WITH MY NETFLIX BINGE!”

Like most binging, I’m quite certain that this behavior isn’t healthy. It’s not wise to drink a whole bottle of vodka or eat an entire package of Oreos. So, it’s probably not a good idea to watch so much TV that your eyeballs begin to hurt.

But it’s so, so much fun.