on Gilenya and giving it my Girl Scout best

What can I say? It's just pretty. Detail from Larriland Farms, MD.

What can I say? It’s just pretty. Detail from Larriland Farms, MD.

So this week I’m doing this mental thing where I’m sitting on the edge of my invisible seat, you guys.

Let me back up.

I’m working with the folks from Novartis, the suppliers for the pill I’m hoping to transition over to, in order to try and set up my initial dose. The pill is called Gilenya, and it is a disease- modifying medication that would replace my daily injection, which is called Copaxone. So far, I’ve taken some tests and done some bloodwork, all the preliminary steps in order to get myself ready, but the last hurdle in order to get on the medication full- time is a six- to- eight- hour, medically- monitored first dose.

Agh, right? I mean, if you want something to make you feel sick, there you go. Obviously, that’s less than fun, and it sounds a little intimidating, to be honest. There’s this incredibly minor risk of low heart rate; it almost never happens, but if it happens, it’ll occur with the first dose. Of course that would be a serious side effect, so they’d want you near medical personnel if it were to happen, etc, etc— which is why I’ll spend an afternoon in a clinic, some time soon, hopefully within the next 10 days or so. Again, that heart thing? It almost never happens, so I’m not sweating it, and my heart is aces- I’m a runner, with a super ECG and a fantastic resting heart rate, so I feel pretty good about this.

Right. All that aside: folks, I’m really, really excited/ nervous about this. I’m just keeping my phone out, waiting for the call that will tell me where to be, and when: let’s do this thing.

No more needles. 

Needles aren’t that bad. I know that for people who don’t give themselves shots every day the idea of a daily injection can seem really daunting, but trust me, it really isn’t a big deal after the first month, and it’s been four years now. The shots don’t bother me much any more. It’s the stuff around the shots that are troublesome: making sure I can refrigerate the shots everywhere I go. (It seems like it should be easy: it really isn’t, despite ADA laws in place to help.) Lipoatrophy. Hey, where the hell did the alcohol pads run off to again? Messing up a shot and hitting muscle by accident. Getting a bum injection and just plain not having a dose for a day. Safely, considerately disposing of my biowaste when I’m away from home. Forgetting to take my dose out of the fridge and walking around with my syringe under my arm for 15 minutes to warm it up. Bruises. Yeah, I really hate the bruises. Those make me sad. Flying with shots is a process, too- there’s a whole rigamarole that goes along with that. I mostly just drive, if I can.

And we’ve been over my numbers- the annual flare rate, my minor relapses. So it’s time to try something else just to look at efficacy, too. That’s an exciting idea.

It could fail spectacularly. That could happen. I don’t think it’s likely, but it’s within the realm of possibility. I think about that a fair bit. This could be a terrible idea, I’ll think after I get off the phone with my Gilenya Navigator, the chatty, lovely woman who helps me do, well, everything that needs doing through this switch. What if this is the worst idea? I wonder, and then I just keep doing it, because I think Copaxone is only working at the “mostly okay” level, and I’d like to see what else is out there.

That makes it seem as though I’m approaching my primary health issue the same way I’d shop for car insurance, but I don’t know how else to explain things.

I’m trying to keep my expectations realistic. Oh, that’s rough. I’m not good at realistic when I really, really want something to work out. I have a bit of a Pollyanna complex. The beginning of my life was tough, folks. I’m not going to give you a hard- luck story, but it wasn’t very nice, and I was sad for a while. It really didn’t seem like things would ever be okay for a long time, and I hit this place where one day I just up and decided that the only way I’d make it as a person, a whole human being, would be to consciously believe that everything was going to be good eventually. It took a LONG TIME, but I totally bullied myself into buying it, and now that’s just my default: everything is going to be great, sooner or later. Most people are essentially good, I’m essentially good, and everything will be essentially good, even if they aren’t great in this exact moment.

I like living this way about 90% of the time. It saves me, more than I can possibly explain. It also makes these moments when I need to be very realistic about things that I really want to have work out a bit tricky. If I allow the idea of this medication working out for me to get caught up in my idea of everything being great in the future, then I could be pretty devastated if it doesn’t happen, know what I mean?

And so, and so, and so: I work again on surrender, on retaining hope, but releasing expectation. Letting go. Living in the moment. Being here, now. All of those phrases that sound so simple: we say these things all the time, and they sound very easy, but they really are the hardest things. How do we relinquish our grip on the things we want most? And oh, Darling Reader, do I want: I want, I want, I want. This life is constant exercise in learning to use my willpower, to grow strong, to grow soft, to become resilient in these ever- expanding ways.

These lessons in surrender are astonishing, I’ll tell you. There might not be enough tea and knitting in all the world to get me through them, but I’m trying, damnit. I’m giving it my Girl Scout best.

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5 Comments

  1. I hope it all goes well so you can take this pill instead!

    Reply
    • Thanks! Me too. It would be so great to just have another pill. I’m just waiting for the call, and trying to decide which books/ knitting I’ll bring with me for the first dose!

      Reply
  2. I am hopeful with you, Sarah! And I’ve always found your optimism is inspiring, not Pollyannaish.

    Reply
    • Thanks, Liz! I think I need a better term than “Pollyanna complex”, but it’s the best I can seem to come up with. “Hopeless optimist” just doesn’t seem to get it all across.

      Reply
  3. I will pray for you. I, too, believe in imagining the “best” and most of the time it happens, sometimes not. But, I keep on trudging on… I wish you the best. I know it will be OK.

    Reply

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