A Stanford Valentine

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On a typical Valentine’s Day, one might expect a day of romantic gestures— giant teddy bears, Papa Murphy’s heart-shaped pizzas, and overpriced jewelry from the neighborhood mall. Since my boyfriend is of the fictional variety, I don’t have to worry about pretending to like the “chocolate diamond” necklace he bought for me at Zales.

This week, my Valentine’s Day definitely wasn’t a typical one— I got to spend the most romantic day of the year at the Stanford Neuroscience Building for my Spinraza evaluation. Upon arriving, we proceeded to not be able to find any handicapped parking in the garage. This is the irony of going to a place where a good number of the patients are crippled just like you. Handicapped parking becomes a valued and scarce commodity— like Stradivarius violins, raw uranium ore, and politicians with integrity.

The first item on the agenda was a lumbar spine CT-scan. Spinraza has to be administered into the spinal fluid, so the neuromuscular doctors need to verify that there is a pathway available in the lumbar region for their mega-pointy needle. For folks like me who have scoliosis and spinal rod fusions as a result of our Spinal Muscular Atrophy (SMA), this isn’t an easy task. You know Pin The Tail On The Donkey? Imagine playing that, blindfolded, with a donkey that has anatomy that closely resembles the tornado from Wizard of Oz. Try to pin the tail on that donkey’s ass and you might hit Glinda the Good Witch instead.

Anyway, after my lumbar CT-scan, I went to see the team of specialists. After taking my vitals, the first thing they wanted to do was find out my weight. This was not as simple as it sounds.

If Elizabette’s wheelchair weighs X pounds without her sitting in it, and it weighs Y pounds when she is sitting in it, how much does Elizabette weigh?

This problem would have been easy if I had known my wheelchair’s weight without me sitting it in— aka, the tare weight. Which, of course, I didn’t. So, we had to do it the hard way. But, I am now pleased to report that the tare weight of my wheelchair is 377 pounds— this does not include me and my backpack full of random stuff. That’s super heavy. Therefore, I’d like to apologize, in advance, if I ever accidentally run over your foot. Or, even purposefully— which I might do if you’ve pissed me off enough.

Anyway, after that was completed, I met with two neurologists, a few nurses, a physical therapist, a respiratory therapist, a blood-draw technician and a circus juggler. (Okay, I might have made that last one up.)

Everyone seemed professional and I was encouraged by their thoroughness. Although, the physical therapist and respiratory therapist were kinda bossy— in a good way that brings out my competitive nature. If anything is turned into a game or a test of skill, I will win, goddamnit.

They tested my pulmonary functions and my physical strength using an assortment of cool gadgets. These will be the benchmarks they will use to measure potential progress moving forward.

All in all, it was a tremendously long, but encouraging, day. The preliminary lumbar CT-scan radiology report indicates that I have a potential open spot on my L5 vertebrae, which is a promising sign. I also learned that the radiologist thinks I have a really big bladder. This is not surprising. I can comfortably go quite a long time without peeing. I suspect that my bladder can currently hold more water than the Oroville Dam.

I’m grateful to the family that joined me on the trip to Stanford and fed me peanut butter and jelly sandwiches. An influx of sugar makes anything more tolerable. If everything falls into place, I’ll try to get Spinraza. It’s still a long journey ahead and I have lots of hoops to jump (or wheel) through, but I’m on my way!

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7 thoughts on “A Stanford Valentine

  1. fran huston

    Omg, this is so exciting! I’m praying they pick you. I love that you maintain your great sense of humor. When will you be home? Love you Xoxo

    On Fri, Feb 17, 2017 at 5:57 PM elizabette… unplugged wrote:

    > elizabette posted: “On a typical Valentine’s Day, one might expect a day > of romantic gestures— flowers, fancy dinners and overpriced jewelry from > the neighborhood mall. Since my boyfriend is of the fictional variety, I > don’t have to worry about pretending to like the “chocol” >

    Like

  2. Marianne

    You have the ability to make me laugh so hard even over such a serious topic. I am going to pray and pray for you. I hope for all the best for you. And thank you because you always make everyones day brighter with your witty humor and kind heart! You rock!!

    Like

  3. Hi,

    I was just reading some of your blog posts (which are hilarious by the way) and love your attitude about having SMA. I do research for SMA and think it’s great to hear the perspective of someone going through it, as sometimes you get so preoccupied by the science it’s good to have a reminder what it’s for! I really hope you manage to get accepted for Spinraza treatment and would love to hear more about it!

    Gillian

    Liked by 1 person

    • elizabette

      Gillian– Thank you so much for your note. It means a lot! I wish you the best of luck with your SMA research… as you can imagine, I’m rooting for you. So, keep your brain cells fresh and vibrant– I heard Wheaties can be good for that. haha. As I move through this Spinraza process, which will hopefully include receiving the treatment, I will chronicle my journey here on my blog! Stay tuned for updates… 🙂

      Like

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