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,

Thursday, March 22, 2012

Ah...My Fans

Well, one of them any way. And a great one at that. My good friend Mel, who also lives with MS, is one of my biggest cheerleaders and provided a lot of support while I was writing the essay on page 127 of the April issue of Woman’s Day. Love ‘ya Mel! Thanks for giving me so much encouragement in my decision to finally get the blue placard! Mwah! 

Friday, March 16, 2012

Extra, Extra! Read All About It!

A few months ago, I was contacted by the Health Director of Woman’s Day and was invited to write an essay in an upcoming issue of Woman’s Day magazine. Why not? Within the month, a makeup artist and photographer came to my place. Within a few months, my story hit the newsstands! Wow. 

That's me! On page 127!

The essay is about my decision to finally get the disabled parking permit. It stems from my post this past September, When Is It Time to Get the Blue Placard?So, in honor of MS Awareness Week, go out to the store and buy your April issue of Woman’s Day. Today! I’m on page 127.  

Be well,

Sunday, March 11, 2012

Just Pick a Color

And I picked orange! In honor of MS Awareness Week!

Thursday, March 8, 2012

Flash Freeze, Capitol Hill and the Color Orange

What are you doing for MS Awareness Month?

There is a lot happening this month as we bring awareness about life with multiple sclerosis, the complexities of the disease and the hope for a better future via a cure. Folks are doing all kinds of cool things all over the country to elevate awareness. Here are some things that caught my attention.

Orange, orange, orange. Orange is the color of MS and lots of folks will be making flashy statements with their wardrobe, especially next week during MS Awareness Week (March 12-March 18). This is a color that is not readily available in my closet so I may opt to shop for an orange scarf!

Flash Freeze. This is so cool. Organized by our pals in NYC, a flash freeze demonstration will hit the streets of Manhattan on March 13. The team will focus on how MS stops people from moving hence the freeze. Details can be found here: Flash Freeze in NYC!

Feeling Political? Check out the happenings at the 21st Annual National MS Society Public Policy Conference in Washington, D.C. Our friend Lisa Emrich is live on Capitol Hill reporting on the event. Check out her updates here:

Edible Support. I even came across this great team raising money to benefit the MS Society through sales of delicious cookies. Edible Arrangements in New England is donating a portion of their sales from every Orange Blossom arrangement to the MS Society. And, they deliver! Orange Blossom

And, there’s more. A lot more. I couldn’t possibly list them all.
  • The team over at The Multiple Sclerosis Associate of America (MSAA) put together a great list of ways to show support: MSAA
  • The Multiple Sclerosis Foundation (MSF) is talking about how Allsup promotes awareness about folks living with MS and how to get SSDI benefits. MSF

So, how about you? What’s happening in your neck of the woods?

Be well,

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