Thursday, April 10, 2008

Fighting the good fight.

The road to "recovery" or just I guess a better word would be "managing" migraines can be a very twisty, windy road, with lots of branches and speed bumps in your path.

I started on my journey to gain my life back from my head about 3 years ago now, when my migraines grew out of control. Back then, I didn't even know what a migraine really was, or even thought that I had them.

All I know is that I would be at my office every day with tears streaming down my face, not because I was crying (well, sometimes) but because the pain was so intense and the lights so bright, that my eyes would tear from the pain.

I thought this is something I just have to deal with, it's just a "bad headache". In a way I'm so glad I was wrong. At least now, I don't suffer alone.

I have found through education, which, sorry to say, really didn't start with my first doctor - all they did was throw some Zomig at me and say "try this when you feel your head start to hurt". Yeah, thanks for your time!!!!

Between doctor #1 and doctor #2 - I found the site and the woman that helped me change my life (holding back tears now). My Migraine Connection is the site, and the lovely Miss Teri Robert is the woman. This lead me to Teri's book, Living Well with Migraine Disease and Headaches. I think I read it in like 2 days! I couldn't put it down!!! It was everything I needed to know about migraines that my doctor didn't or wouldn't tell me (yeah, that's part of the title too! LOL)

So between the website, the book, and Teri - I knew that there had to be more out there for me. I saw another doctor and was scripted my first preventive.... Topamax.

Topamax became my life saver....but it didn't last long. I found myself on the MMC forum every day, asking questions, talking with people with migraine and going through the same things I was going through. I kept reading, learning and educating everyone I could on this disease, as fast as I could learn about it!

Now, I am trying to not only be my own advocate, but be one for others. I now host on MMC with Miss Teri who is the end all, be all of migraine knowledge, among other things she is one of the nicest people I've ever had the pleasure of speaking with.

So you ask me how I cope with what I know know is a neurological disorder that effects over 36 MILLION Americans?

I learn. I teach. I fight. I educate.

I go to sites everyday to see what's what with the latest on migraine - blogs, MMC, email alerts anytime Migraine is mentioned ANYWHERE on the web!!! Yes, maybe it's become a little obsessive, but this is not like any other disease, at least not that I know of.

There are hundreds of different preventive medications currently being used for migraine can take a very long time for a migraineur to find the one - the one that works. I try as hard as I can to be my own advocate. I learn about this disease, sometimes to the point where I know more then the doctors treating me (and that's when they get fired!).

I am out there, fighting not only for myself, but for all of us migraineurs - fighting to get us more funding, by sending out emails and posting about the AHDA. I'm leaving the flyer's in my office, giving them to friends, family, my doctor, pretty much anyone who will take one and give me two seconds to explain how important this really is.

This is how I cope. I cope by fighting the good fight. I cope by knowing, we can and we will make a difference.

We are one voice united, and if we all fight together, together will succeed.

1 comment:

Diana said...

Hi Eileen,

I love your post and the tone in which you deliver your story. It sounds like you are one of those special voices that champion us all. YOU GO GIRL! And keep fighting the good fight.

Wishing you love and light,