Facing Facts

Since my diagnosis of SHM in January 2012 I have been looking for the switch to flip to reverse things. Which button do I push, which food do I cut out, which activity do I resign from to make this stop? Growing up I had bouts of migraines that would last for a month or so and then stay away for several months or even a couple of years. This is how I perceive my migraines-an irritation that will eventually go away and leave me in peace until the next time. So obviously even though these are different and scary and intrusive and all-around sucky, they must be on the brink of leaving.

I just this minute realized that this is not going to happen. From January 2010-January 2012 I had 4-9 migraines a month, and since then I count myself lucky to have only 3 attacks per week. At what point do I have to sit myself down and face the reality that this has been my life for two years already, and it seems to be only getting worse?

I need to make a commitment to myself and my family and my mental well-being and say, "this is my life now". Instead of focusing all of my energy on where I wish I was and how things used to be, I need to start focusing on how to make Right Now better, and how things can be in the future. As much as I hate this disease and other people's preconceived notions about it, it's a part of who I am now and the sooner I start planning for it and taking it in to consideration with the rest of my life the happier I will be.

I was just reading some past blogs and realized how little I posted in 2011. There really is a good reason for that. I was working full time, going to school full time, and doing lots and lots of theatre.

In the summer I was Rosencrantz in Rosencrantz and Guildenstern are Dead. It was an amazing play with an amazing cast and I loved every minute of it. The pictures are on facebook, go look them up.

Then right after that our company took over our theatre space that we were sharing with two other companies. It was a lot of work because the terms of our lease demanded visible activity in the space 5 days a week. This isn't a problem when we have a show in the works, but in the meantime it's MUCH harder than it sounds. For several weeks I would go straight from work to the theatre and find something to pretend to do, and it got really old really fast. But thankfully in November we started work on our Christmas show, Laughter and Light: A Celtic Holiday Celebration. It was a compilation of traditional winter rituals, celebrations, songs, dances, etc from England, Wales, Scotland, and of course, Ireland. I wrote it, I directed it, I choreographed it, I costumed it, and the whole family was in it. It was a LOT of fun, but I was exhausted when it was over!!

We went to Utah again for Christmas, and because I, as you know, suck at taking pictures I don't have any. But my mom did so I'm sure they're around on facebook as well. (wow I'm lazy). It was a blast, we had an absolutely amazing time!

January started with yet another play, this time it was Frank McCourt's musical "The Irish...And How They Got That Way". I told Chris I couldn't be in this one too, I needed a bit of a break plus it's tax season and I knew I'd be swamped at work. So I was just the musical director for this one and good thing, too. My migraines had been getting worse and worse, and on the 23rd I had one that sent me to the hospital in an ambulance.

The new diagnosis is Hemiplegic Migraines, which are very rare and nasty. Think of every bad symptom you've heard of with a migraine, add in stroke symptoms (but without the actual stroke/death), plus other things like fever, and that's what happens to me. The one on the 23rd was bad enough it triggered a partial seizure as well. I had to get a medic alert bracelet because these leave me unable to move or speak for hours at a time. Medications used to treat migraines (I was on Relpax before), are very dangerous with this type of migraine, and can actually cause a stroke, so I can't take anything for them except for prescription pain medication when they're really bad. But that doesn't help any of the aura and it won't stop it once it starts. The preventative medicine they've got me on lowers my blood pressure so I have to chart that carefully to make sure it doesn't go too low. Essentially, this sucks. I'm on the longest streak of good days since Jan 12th, 4 days in a row without losing mobility. I've had some massively EPICLY bad pain during these days, but since I could still move and talk I take it as a win. Here's hoping things continue to improve!

Because of the stupid HM, I had to quit everything I was doing except work. School, theatre, everything. So far this is pretty hard for me, when I'm not hiding in the dark with a migraine I sit on the couch and feel like I'm being really naughty and I need to be working on something. Then I remember that no, I don't, and I relax for a while. Unfortunately I do still have housework to do and I'm usually way too dizzy or light/sound sensitive to do it. The kids are being really helpful and sweet though, both in helping out with housework and sitting very quiet and still with me. I'm hoping to take this as an opportunity to pay more attention to them instead of myself.