Hurricanes, Pregnant Pandas & Kardashians


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.



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






9 thoughts on “Hurricanes, Pregnant Pandas & Kardashians

  1. mamajo23

    I admire you so much. I love reading about the physical (and mental) progress. I am sorry I never thought about the psychological part as your friend and checked up on you about that part more. Thank you so much for sharing. Xo

    Liked by 1 person

  2. Elizabette,

    As you know, I’m one of the people who make the pilgrimage down to Stanford for the Spinraza injection, so I can easily relate to what a hard journey it is. I’m going down Thursday, October 19 for my third injection.

    I have also noticed some very subtle physical changes after my second shot. The next day after my second shot, I felt fantastic and started having some physical movement in my fingers and feet that I haven’t had since the 80s. One notable physical change that I have noticed is my ability to turn my head. My peripheral vision has improved because now I am able to turn my head more to see sideways; something that I haven’t been able to do also since the 80s.

    Now, I am able to move my head to my favorite heavy-metal; something I prefer to do instead of watching TV.

    Liked by 1 person

  3. Mayte Ocafrain

    Thank you for the update, Elizabette. Always a pleasure to read but feel bad for all your sufferings and discomfot. You are such a brave and strong young lady! Hugs.


  4. Edith Stock

    Really appreciate your letting us know your progress. Have considered you one of my great friends even though we’ve not been able to physically communicate for years. Your exceptional abilities even tho hampered with your spinal problem are awesome!

    Don’t know if you remember making a holloween pin for me many many years ago as a youngster. Since we didn’t have kids come to the door for trick/treat I made up bags of cookies, etc. and delivered them to kids out “on the farms”. You responded by making a gift for me!

    You are the age of one of our granddaughters and we rather consider you as one of those treasured souls. We now have five, yes 5 great grandsons! Not a girl in the lot, but boys are very likeable critters.
    They range in age 11 yrs to 4 months. One 4 yr old lives just 20 min. from us but the other 4 are spread between East and West coast states. We fly about frequently in effort to stay as close as possible to their swiftly changing lives.

    So very glad you’re getting such positive physical results from treatment! Know you’ll “juggle” your emotional stress well–always have.

    Love and prayers, Edith Stock

    Liked by 1 person

  5. Hi elizabette
    i am an iranian spinal muscular atrophy Patient, We are waiting for spinraza drug in Iran.
    I really enjoy reading the history of the treatment and receiving the medicine you write. Please write more, more and more…
    good Luck 🙂

    Liked by 1 person

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