Monday, March 26, 2012

What's on my (MS) Mind?

Every social media platform asks me what I am thinking about, what’s happening, what’s on my mind. Well, let me tell you. I have a lot on my mind. My mind is inundated with lots of things, some important, some just my own inner ramblings. 

Social Media Universe: So, Christie, what’s on your mind?

Christie: (struggling to come up with something in 140 characters or less) Well, at the moment I have a lot on my MS mind. This is just a sampling:
  • I am wondering when my vertigo will stop. I had another bout of it last night at the office. Make the spinning stop. Make the spinning stop. 
  • I would like to be friends with the following people: Oprah Winfrey, Ellen DeGeneres, Phil of the Amazing Race, the president of the National MS Society, Flo Fox. To name just a few. In my eyes and in my heart, these fine folks are heroes. 
  • I want to go to Cuba but worry that the heat and humidity will kick my MS ass!
  • I need to kick up my training routine up a bit if I am going to ride from Bay to Bay in the MS Bike Ride. 20 minutes on the trainer isn’t going to cut the mustard!
  • Woman’s Day. Page 127. That’s me. Holy crap! I am in a state of disbelief even though I sent them the essay, had my makeup done and had my photograph taken by a professional photographer who spent over an hour with me snapping pictures of this mug! Really!
  • Feeling anxious about forgetting stuff all the time. Especially taking my nerve pain medication. I wrote tips on a blog post and should probably take my own advice, right?
  • That new lesion along my spinal cord, that’s what’s on my mind. Crap. Here I was going along my merry way with my daily shots of Copaxone thinking I was treating my MS. Crap, crap, crap.  
  • “I am not impressed with your physical exam” said my neuro. Now that’s funny! He means, of course, that I passed my physical exam.  Too bad the rest of my appointment got serious.
  • I have injected myself with Copaxone nearly 700 times to no avail. New lesion.
  • "Would you like Tysabri, Gilenya, Rebif or participation in a clinical trial?" Hmmm. Just a glass of water please. 
  • My cat had a kitty heart attack yet after a week in the hospital, she’s brand new! What a relief. I love her so much, that sweet little princess. Yes, I realize this makes me seem like one of those crazy cat ladies. I do not care. I love my cat. 
  • 1/1000 chance of getting PML while on Tysabri. Or, is it 1/10,000. I would like to choose the second probably factor please. Is that on the menu? That I can live with.
  • Weight gain while on Gilenya? No thanks. I am trying to shed a few pounds.
  • My neuro assured me that the US death of the MSer on Gilenya was because he/she was mismanaged by his/her doctor. That’s bull#@($*&@( and I hope that doctor is not practicing anymore. What kind of world are we living in?

That's enough for now. I could go on. How are you? What’s on your mind? 

Be well,

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