Wednesday, March 4, 2009

It's my anniversary!

I'd be excited if it were "of the day I graduated from MIT" or "of the day I sold my first oil painting" or "of the day I received the Congressional Medal of Honor"...but nooooooooooo.

It's the 10th anniversary of my MS diagnosis. Oh boy.

But, even though it's not really the kind of milestone you celebrate -- and I can see my sister now, quickly yanking the balloons down behind her back and throwing a dishtowel over the cake -- it's still a time for reflecting.

I vividly remember the day of my diagnosis. I actually was diagnosed a week or two before that, but I went to the head of the neurology department at Shands Hospital at the University of Florida in Gainesville, FL for a second opinion.

When that second doc confirmed what the first one said, that's when I gave up hope of thinking the first one was off his rocker and it was all just a big tadoo over a pinched nerve or something.

I drove myself home somehow. It was an hour ride in the silence of my own car, by myself, crying the "poor me" freakout cry.

I remember thinking first of my son who was not yet quite 6 months old. What kind of mother could I be? Since my neuro told me he had seen a lot of MS patients and he felt my case was "particularly aggressive", I was certain that death in a matter of a short time was imminent.

My mother knew a woman with whom she used to work who had been diagnosed 10 years prior. She was on Copaxone and had been in the clinical trial for it. Before that her husband had raised bees and they tried the bee sting therapy. She looked wonderful and had not had a relapse in many years. She didn't have any outward, telling signs of MS, and that gave me hope for my future.

I remember thinking..."what will I be like after 10 years??" and all the answers I conjured up terrified me. If I hadn't killed myself off, I had myself at the very least bed ridden.

Now, on this day of reflection, I think I want to see those balloons and have some of that cake after all, Lorraine. I've had my ups and downs and some really scary relapses that I wondered "is this the big one?", but I'm here. I'm walking, running and jumping, loving, eating, breathing, laughing, writing, complaining, joking, taking my pill and happy to be alive.

So for all you newly diagnosed, take away this nugget: I feel better now than I did 10 years ago. It doesn't all have to be gloom and doom. While MS is a devastating disease and has robbed so many of so much, you aren't automatically sentenced to that end of the spectrum.

I thank God every day for the fact that I have regained nearly all I have lost from each relapse.

MSers have a way of being thankful for the little things that the rest of humanity takes for granted.

Every morning when I get up and the carpet tickles my feet, I am amazed I can feel it... and I say "thanks, God," in my head. I know what it's like not to feel that, and I didn't like it one bit.

So, it might seem weird to say, but so far, I'm having a very happy anniversary! :-)

10 comments:

  1. Thank you. I really needed to read that today.

    ReplyDelete
  2. Amen, sista!

    I celebrated my 10th anniversary by graduating from college - and walking the stage!

    You are my inspiration during my own venture into Fingoheadness. I hope that a year from now, I'll be kicking butt too.

    ReplyDelete
  3. Thanks everyone!

    Dawn: I can't really say if mine have diminished due to Fingolimod, or if it's just that I haven't had a relapse in so long that my body finally had time to heal more completely.

    I was walking with a cane at the start of the study and now I don't know where my cane is -- and the thought doesn't even panic me.

    I regained completely the feeling I had lost years ago in my feet, I have much more stamina when grocery shopping or going to Wal-mart, etc.

    I just feel so much better. I really hope you do too! Best wishes on your journey.

    If you haven't joined yet, please consider joining our private group for Fingolimoders. (If you have joined, I'm an airhead and don't know who is who, so sorry). Anyhow, it's a membership by pre-approval group for those of us in the trails.

    Jeri

    ReplyDelete
  4. Doh! Guess I should mention the button to click to join the group can be found at the top right of this blog. :D

    ReplyDelete
  5. And many more happy years with MS!

    ReplyDelete
  6. Jeri you are an amazing woman and an inspiration to all. Big hugs - I love ya!

    ReplyDelete
  7. I'm now on a diet to lose weight so I can keep up with her at the grocery store.

    ILYWAMH

    ReplyDelete
  8. Happy Anniversary!!!

    You are at least the third person I've read today that this was their MS dx anniversary. How bizarre is that?

    Anyways, I thought that you would enjoy seeing what I read recently. I was looking through some past highlights of CMSC (Consortium of MS Centers) annual meetings and saw the following discussed in 2007:

    "a phase 2 study showed Fingolimod, derived from a traditional Chinese medicine, was highly effective, with up to an 80% effect on MRI scan and more than 50% decrease in relapse rate. An extensive phase 3 study is under way at present."

    This was the first time I had seen it referred to as being derived from a traditional Chinese medicine. Very interesting.

    ReplyDelete
  9. Thanks everyone! (again)

    @ Lisa: yes, it's an ancient Chinese secret. :P

    I posted this over a year ago:
    http://fty720.blogspot.com/2008/01/where-fty720-fingolimod-comes-from.html

    There's a picture of the fungus and everything.

    I think so many people were diagnosed on my anniversary because it's an inside (cruel) joke with neurologists.

    "Let's hold off from telling her/him until 'March Fourth!" It sounds just like "march forth!" which some of us can't do.

    ReplyDelete