Showing posts with label gilenya. Show all posts
Showing posts with label gilenya. Show all posts

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,
Christie

Tuesday, January 25, 2011

The MS Buzz #4

The MS Buzz #4 is now available! Last week's chatter? MS Fatigue, Gilenya, new trials and a book review. Click here to read more: the MS Buzz #4.

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