This Disease is Still Stupid, But…

Untitled-2So I started this blog, then I started another one too. Then I moved cities. And lost 100lbs. And had some relapses. And inadvertently stopped all DMD treatment. And fell in love. And got married.

So it’s been… a time.

I am very happily married. Happy, too, despite being poor, unemployed and am in my second year of SSDI appeals. I’ve gone in four years from making a more than decent living wage at a full-time job to having the mere idea of “getting a job” sound entirely too foreign to my body; it has deemed as much true with an increase in fatigue, vision problems (including eyeball seizures!) and cognitive dysfuntion.

SC Pride 2012

SC Pride 2012

Even with treatment for fatigue, it is normal to be slayed by it once or twice a day. I am learning to enjoy the things I can do (cook, blog, freelance) instead of hating myself for what I cannot (read books or long blocks of text). Even with adversaries like vision loss I got to help with the design peripherals at an exhibit at the South Carolina State Museum and design promotional characters, a banner and t-shirt at 2012 SC Pride for an organization I can’t get behind enough. I’ve had four new clients this month. I’m not proud that one of my mantras happens to quote a character from a TV show I don’t really care for: “Don’t you tell me what I can’t do!”


One thing I did for the museum exhibit

After what was either three kinda short or one very long exacerbation, it was decided to switch from Betaseron. I was gonna go with Tysabri, liking the look of no more injections but family (my mom and wife, respectively — perhaps the two most important people in my world) decided that if the 1 in 1,000 odds of death were lottery odds we’d all be millionaires and please choose again. So Copaxone plans and forms were ushered in right before I went to a dinner for Gilenya where my doctor was speaking. It’s been on the market the least time of the DMDs but touts a better success rate than the interferons and, well, isn’t a needle. I am a very, very lucky person to have the neurology professionals I do on the side of my betterment; they tried in a flurry to get me set up before their holiday break, and got as far as they could speeding up a potentially lengthy process. I stopped Betaseron injections in September; by next month I will be starting the new year with a new pill.

book_of_mormon_musicalBut back to my wife. She’s a yoga instructor who easily changed my life by introducing me to constructive movement. She’s also an actress and a singer and an all-around spectacular person who thrives on helping others. Plus she’s totally gorgeous — did I win the lottery or what? We traveled from the deep south to New York City to tie the knot with a judge who in a twist of serendipitous fate was from a town very near our own. The honeymoon was a spot in the Eugene O’Neill theater with Book of Mormon tickets, and the CD of the show hasn’t left the car CD player much since getting home.

419032_195704777202718_1562108422_aBoosted by a new set of eyes on my health, I’ve been able to start incorporating non-Western-medicine tactics in the maintenance of my personhood. Yoga was an incredible start to a journey that’s proven the benefits of diet, chiropractic care,  meditation and essential oils — I know how much snake oil is out there just waiting for my belief, so I am cautious and skeptical until real changes start to occur; the catch 22 here is that I’ve got a condition that’s paced itself at a slow burn I usually cannot see. That being said and constant confusion established, we’ve all got to eat and I’ve got no health insurance so as Hippocrates suggests I  “Let food be thy medicine and medicine be thy food.”

Funny, right, how life just marches on even when you forget to blog about it? 2013 is hours away but I was lucky enough to find new beginnings sprinkled everywhere in life throughout 2012. God, yes, there were hardships… but maybe I’m lucky to have a foggy memory and poor visual acuity, because all I can see are the silver linings.

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