The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Wednesday, April 12, 2006

So I've started posting here for one else but me. I am reluctant to talk about this with the blog world, because I don't want it to seem like I am letting MS define me. I am not like "Hi. My name is Heather and I have MS." At the same time, this is a big deal. It has affected various areas of my life. I have been to more doctors and the hospital more times than I have in years combined.

Today, I started the steroid infusion. I sat in a hospital room for over an hour while they prepped the IV and did the 250cc of steroid drip. It was boring, but I did watch some MTV's "My Super Sweet Sixteen." A high price to pay for cable. I now have an IV with a cap on it, sticking out of my arm. I am wearing a net over it, which looks very much like the 1980s Madonna style. I need it to go up like a glove without fingers. And white is not nearly as badass as black, it will do.

I know this is the start of a journey. I am not painting it out to be doom and gloom. Sure, there will be challenges, but life can be very full, still. Still, there are things that I think about...little things--things I never thought about before. They are:

  • I hope I get the feeling back in my legs. I want to play tennis, and I hate to think what life would be like never playing tennis.
  • I am making arrangements to move to the first floor, which is one floor up. With flare ups--good days and bad days--I just don't know what strength, balance and energy I will have.
  • I have to consciously think about what shoes I will wear. Wearing sandals, like slide on sandals, just don't work. Since I can't feel my feet, my sandal doesn't stay on, and my foot pushes it's way to the top so that my toes hang over the edge.
  • The everyday tasks of grocery shopping and running errands is exhausting.
  • People make jokes about canes and scooter carts. I laugh. But inside, I feel a bit strange, because I know if it progresses much further, I may need some help to keep me steady. But I am 26 dangit, and will walk as long as I can.

The uncertainty--not knowing if it's progressive, if it will go into remission, etc--is annoying. Even today as I sat through the IV drip, I kept trying to see if I could feel anything more in my feet. But I am sure it's too early to tell.


  • At 8:27 AM, Blogger DeeDee said…

    I love you! And by the way, it IS a clever name for your blog.


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