Sunday, June 9, 2013

Trials Without Tribulations! Yippee!

Check me out: I've been chosen to participate in a clinical trial for a new migraine medication!

I'm not allowed to tell you anything about the trial while it's happening-- it's a double-blind study, so no data relevant to the study can be posted on social media in order to maintain the integrity of the trial.

So fancy! Ha ha.

But I can tell you this: it's a prophylactic medication, so if it works, it will prevent migraines from starting, rather than treating them once they begin. And I'll be involved with the study over the next seven months. And I have a 50/50 chance of receiving the drug vs the placebo, but won't know which I got until the trial is over.

So wish me luck, friends. I want that drug like burning.

That does mean, however, that I won't be able to post anything about my migraine status over the next seven months. I thought I'd rather tell you this was happening now and have you know why I was keeping mum about it in the future, than just never say anything or tell you I wasn't having migraines but lie about the reason. Because lame.

So: expect no public updates from me about the existence/quality of my migraines. It's a little tricky, just because they've been so implicated in this work and this blog and in my mental and physical health in general, but I'll find a way to write around that topic for a while.

I will probably mention the trial now and then, just because it's really interesting to be taking part in something like this, and the doctor in charge was really intrigued by my particular set of symptoms and circumstances and was excited to have me on board, and because there are so few ways to feel like one has any agency with regard to chronic illness that it's just awesome to think I could be part of the solution not just for myself but for others.

And being part of the solution, not just for myself but for others, is my new thing

Update: remember my "Please Don't Help My Kids" article that went viral a few months ago? Well, it's apparently having a little resurgence. They've changed their interface over there, so my stats aren't showing up properly and I can't tell what my "share" count is at the moment, but I'm told it's going nuts again, which always brings a bunch of new readers to this blog (hello, and welcome!) and also reminds me that I need to write a few more posts there, because I have more to say.

Never in my life did I imagine I'd write something that would be viewed by so many people, world-wide! Based on the numbers I've seen from the Patch, and from Facebook and Tumblr and Pinterest (OMG, it's everywhere!), it has to have been seen by several million people by now.

In a way, I wish I'd known this would happen before I'd posted it, because I would have made a few edits. 

Then again, if I had known, I never would have had the courage to post it at all. So. There's that.

The universe knows I need a few lessons in living my life less cautiously, and just jumping in whether I've tested the waters or not. And thus, it has provided.

Thanks, universe! You have my permission to continue with this trial. Just don't tell me about it beforehand, or I will mess it right up.

In other news, I am hard at work painting and organizing my new house (sometimes more in theory than in fact, but still: a lot of energy being expended in that direction). We're settling in and figuring out all the quirks, of which there are many. We haven't yet reached the tipping point, where things work more for us than against us, but I think we're getting there.

And room by room, organization is emerging.

Helpful in this process is my new-found focus on rerouting my triggered behavior. Frustration and overwhelm are more easily kept at bay when you know they're caused by phantoms.

Or at least, they will be. When I get used to it.

It's a step forward, though. It's enough to be getting on with

Agency: the answer to everything.

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