A Cure for Cold Feet

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It’s been a little over a month since my 5th injection (first maintenance dose) of Spinraza. As I was getting over a respiratory virus at the time of the injection, it took a little longer to feel the effects of this latest dose. But, about 10 days ago, I felt a little zing… the burst of feeling when my three SMN2 genes decide to be mini versions of The Hulk— turning from nerdy Mark Ruffalo into a green, CGI shirtless monster.

The muscles in my arms and torso were more responsive and almost… tingly. I often feel the same way if I drink too much red wine— only this time I didn’t have a purple-stained mouth as a memento.

I noticed new abilities. In the winter months, my feet and legs are always cold. So, when I get into bed at night, I have to use a heating pad to warm them up. To stop a person from scalding themselves or setting their bed on fire, my particular heating pad as an “auto-off” feature that activates after about 45 minutes. This is exceedingly annoying. While I’m appreciative of the consideration for my safety, it takes me longer than 45 minutes to warm up. So, I have to press the button on the cord to turn the heating pad back on again.

The past few years, I’ve had a hard time reaching the cord and pressing the button. But, last week, I noticed that I was able to grab the cord more easily, and to press the button more firmly. My icy toes were super stoked by this development.

I also grew hungry again — similar to what I felt at the beginning of my Spinraza journey. I wanted to eat. And I specifically wanted protein. Meat, beans, yogurt, eggs— and oh-so-much peanut butter. I would have slathered peanut butter on a steak if my inner foodie hadn’t cried out in horror, “You aren’t a kookie pregnant sidekick in a romantic comedy! No one wants to see you put Skippy on a filet mignon!”

This burst of energy coincided with the arrival of the Winter Olympics. If you know me at all, you’d know that I’m a die-hard fan of the Olympics. It doesn’t matter if it’s the summer or the winter games, I love it all. I watch it ALL DAY. And this isn’t hyperbole. From dawn until dusk, that’s what I do. My life practically stops. I’m like Donald Trump with his Twitter account. Nothing else of any importance happens in my life.

So, this week, I’ve been glued to the TV. I’m not sure if it’s because of the endless hours staring at the LCD screen while listening to the Olympic music, or all the extra protein grams floating around in my body, but I’ve started having delusional thoughts.

“What is wrong with that figure skater? Landing a quad jump can’t be that hard.”

“Every Norwegian baby comes out of their mother’s uterus wearing tiny skis.”

“I bet with just two or three more years of Spinraza, I could totally do Olympic Curling.”

Now, this doesn’t make any sense. And it has no basis in reality. But, this doesn’t mean that I didn’t think it.

Perhaps it’s a good thing that the Olympics only come around every couple of years. These delusions aren’t good for me. Frankly, if they continue much longer, I might become convinced of something truly crazy. You know, like that North Korea is a magical place where a man named Kim Jong Un gives hot fudge sundaes to everyone that comes to visit.

Unfortunately (but, secretly, amazingly!), my friend Joahn sent me this Olympic scarf two days ago in the mail— which has only fueled my obsession. I wear it around the house while I watch the Olympics and eat hummus. If you look close enough, you might see crumbs on it.

I think I’m a lost cause.

olympic

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13 thoughts on “A Cure for Cold Feet”

  2. fran huston

    Girlfriend, You made my day. Your column made me smile. I have been nursing a cold and did the same as you. Just vegged in my chair nodded off and on, held my bankie and hankies and happy to watch favorite events.

    I love the improvements you are feeling, just wonderful! You should get some Good news next appointment.

    Miss you so much. Love ❤️

    Liked by 1 person

  3. Lisa Sarasqueta

    When I see your posting come through in my email, I drop everything to read it.
    So stinkin’ funny! And I am super delighted for you about the Spiranza lift!
    Happy Olympic Indulging! ❄️ 🏂 ⛸ 😅

    Liked by 1 person

  7. rich

    might want to share……….

    I received an email from Cure SMA.

    This email explained how Medicare and Medicaid were planning on changes as to who qualified to receive the Spinraza treatments. Eleven states, including the state that I live in, Texas, are having stipulations and requirements imposed by the Medicaid and Medicare funding board detailing who can qualify to receive the Spinraza injections. One of the stipulations even allows Medicare and Medicaid to remove someone from receiving their injections even after they have started, if they do not meet the requirements imposed by this new stipulation. Cure SMA is asking all of us to send an email to the representative that is responsible for making this decision. They are asking that we send an email detailing the benefits of Spinraza for those of us that are either on the treatment or for a family member or friend who is on the treatment. Since I had already completed and edited my video for Sunday, I put a preemptive message at the beginning of the video explaining that I was going to do another video for Monday that would address this issue. As a collective voice, we have every right to demand that there be no stipulations or restrictions put on anybody who has SMA and their rights to receive this treatment. When Biogen and Ionis created Spinraza, there were no stipulations as to who could and could not receive this potentially life-changing treatment. Since there were no stipulations and requirements when they developed Spinraza, there should be no conditions or requirements imposed by the Medicare and Medicaid funding board.

    Be sure to check my website on Monday, because I will have another video where I explain what we need to do regarding the changes that Medicaid and Medicare are trying to impose upon those of us that are on the Spinraza treatments.

    https://smajourney51.com/february-2018

    Liked by 1 person

      • rich

        This is the latest update:

        Feb 26, 2018
        In this video, I explain some of the changes that Medicare and Medicaid are planning on making regarding who qualifies to receive the Spinraza treatments. Eleven states, including the state that I live in, Texas, are having possible stipulations and requirements imposed by the Medicaid and Medicare system detailing who qualifies to receive the Spinraza injections. When Biogen and Ionis created Spinraza, there were no stipulations as to who could and could not receive this potentially life-changing treatment. Since there were no stipulations and requirements when they developed Spinraza, there should be no conditions or requirements imposed by the Medicare and Medicaid system. As a collective voice, we have every right to demand that there be no stipulations or restrictions put on anybody who has SMA, and their rights to receive this treatment, including individuals that have Medicaid and Medicare as their insurance carrier. Please take time out of your day and help those of us that are on Medicaid and Medicare. By following the instructions that I give you in my video, and by sending one email, we can make sure that our voices are heard regarding this important issue.

        Like

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