Friday, May 9, 2008
Break out the party stuff! It's been a year!!
It's my one year celebration of the last MS relapse I have had! The spots on the party hat represent healed up myelin and the fringe around the edge are my happy little axons.
If you had told me a year ago that I could go for an entire year without taking steroids, using my cane, being numb, being tired, or worrying about if this was the downhill slide into MS oblivion, I'd have never believed you. I think back a year ago to where I was...
I was doctorless since my previous neuro had suffered a massive stroke 2 years prior. The other neurologists were either a) not taking new patients, b) not taking MS patients or c) not taking medicaid. So I was suffering along, going to the ER whenever I felt a relapse was just getting way out of hand and I needed the IV punch.
My primary care doc was just as frustrated as I was. I kept going to see him and he kept saying I really needed to see a neurologist to get a handle on things. I told him I had called an MS center in Jacksonville but got almost all the way through setting up an appointment only to be shot down when I found out they didn't take Medicaid. Sheesh! Guess it doesn't pay to be self-employed and uninsured at diagnosis. You should only get MS if you are independently wealthy, fully covered by every possible type of insurance, and enjoy frittering away money on things like shots.
Anyhow, my PCP got me an appointment with the Comprehensive MS Center at Shands Jacksonville and my life changing journey began that day.
I was scared, in pain, in the grips of unrelenting MS attacks that just kept knocking me back down every time I stood up and caught my breath, like merciless waves at the beach.
Today I am in a totally new place. A place that is located on the outskirts of Normal, just a stone's throw from Mundane. The town is known as My Happy Place and if this is as good as it gets, I can live with that.
I'm going to make it a competition with whoever wants to take me on. I'm going to see just how many of these yearly celebrations I can have in a row before I get my butt kicked once again by MS. I'm realistic; I know it will happen -- I just hope it's not for a really long time.
I'll be hitting the 9 month mark on Fingolimod (or possibly Avonex, but I doubt it) on the 20th of this month. For all of you considering starting the trial (as I have read on message boards), by all means give it some thought. I can't say enough good things about this stuff....they should really be paying me to be their #1 spokesperson.
I'll be back soon to tell you about the bathroom remodel. It's chock full of side splitting hilarity....or at least now that's it's nearly over and I can look back on it. Maybe not so funny at the time.
Posted by Jeri Burtchell (TickledPink) at Friday, May 09, 2008