My life with Multiple Sclerosis
Do we fly our flags today? Are there parades, fiestas, pinatas, fireworks? How to we "celebrate?" LOL! I mean if we're gonna have our OWN day, let's PARTY!
I'm so glad we're friends, Creep! And that we've already joined together through writing. UGH. I'm such a PMDD sap...
But on a serious note: "Joining hands", really? I was recently, accidentally on the CDC website. They had a alphabetical link to diseases. So I check out our favorite letter "M". ABSOLUTELY NOTHING with regard to MS. Oh, but they have "Morgellons" that new "is it a disease, is it not" thing. They had mellomine--if you're worried about consuming it in Chinese products. BUT NOTHING ABOUT MS!Shouldn't we MSers be given questionnaires about our health problems/family history, all that kind of stuff. How is anyone going to figure out this disease if they don't ask us????And if the world is coming together, why isn't the CDC?
I agree.They made this "MS" celebration day but what were we supposed to do?? It's funny, I haven't heard or seen anything on tv about it or in the news. I didn't see any celebrations in downtown Chicago. So really...If they are going to declare this worldwide MS Day then The USA must have missed the invitation. I do think it is a huge step in our favor but they needed to prepare and plan a little more.
I went to a presentation given at the Courtyard Marriott in Tacoma tonight, sponsored by Biogen idec, and aaalll about Tysabri. The doc who was the main speaker has MS and has just completed his 30th Tysabri infusion; one of the other speakers is a retired doc who also has MS and has completed his 33rd infusion; and the third speaker has only been on the big T for 18 months. While all had wonderful responses to T, they weren't holding hands. Funny- there was no mention that today was world MS day. Just sayin'.But they did get me thinking about going on T. I guess I'm getting desperate with my diminishing capabilities.
I'd settle for really normal life.
Come to think of- when I think of worldMSday I think is this the day we want the whole world to "celebrate" MS???It doesn't make sense. My daughter drew a PERFECT Logo for the MS Chapter. I don't know where she should submit it to. It is really, really perfect. It will make "pink" think "green".Any ideas?
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