So I got this invitational flyer in the mail the other day, from MS ActiveSource which is a sort of educational program run by Biogen Idec, the drug company that produces Avonex. In early April there will be an "educational event" in which my specialist Stanley Cohan will be speaking, along with author of MS and Your Feelings, (which I liked quite a bit) Allison Shadday. For some reason the thought of going to an event like this sort of freaks me out a little. If I knew that I could go and not have to talk to anyone if I didn't want to, then I think it would be great. If I was totally miserable and I knew that there would be a way for me to politely leave the building without making an ass of myself, then I would definitely go. What if I show up to this thing and I'm the only one under the age of fifty? 

Okay, so they are also trying to entice people with a free dinner. The whole dinner thing is a bit of a turn off for me. I either want foie gras or french fries, but I'm sure the meal with be some sort of unhappy medium. What would really bring in the masses would be an open bar. Who's planning this event anyway? 

On a more serious note, I have these back and forth feelings on what is positive for me in terms of learning about and dealing with MS, and what is not. I want to be an "active" participant in my disease and learn as much as I can, but going the route of "educational events" leave me sort of uneasy. I suppose this could be a little of the hermit in me, coupled with my fear of what other MS patients in the room may be like. I am selfishly afraid of going and seeing people who aren't doing as seemingly well with their disease, and just feeling deflated by it. I seriously need to get over this way of thinking, and perhaps this would help me push through that. 

I went ahead and registered for the event just in case. I sort of have this dare with myself to go. I think something like this is worth trying at least once, and the fact that my specialist is speaking along with Allison Shadday, gives it a little more pull. I suppose the worst that could happen is I go and it ends up being butt loads of propaganda trying to boost up Avonex. Or maybe I will come home feeling a little more confident or inspired somehow. I just don't know.  

Either way, I have until April 8th to decide. 

 


Comments

Anne

Sat, 28 Mar 2009 21:23:17

Hey,

I learned about you guys from Lisa Emerich's blog and you are just terrific!

Wanted to say (although you didn't really ask), I was on Avonex for eight years and was happy. After my initial exacerbation cleared up, I was absolutely back to normal. And, yep, that's a remission. My next exacerbation was four years later. My neuro said the same thing yours did, I didn't have to get an MRI unless I was getting symptoms or not feeling right. Looking back on it, I should have gotten them every couple of years. In the period between my MRI's of 2005 and 2008, there was a pretty significant amount of disease progression (damn!) and I really didn't feel all that sick, you know?

Anyway...there's my two cents. And I love the blog!!

Anne

 

Jessica

Tue, 31 Mar 2009 12:58:14

I went to my first conference for ms when i was just diagnosed in 2003, I was 24 years old. I went with my mother, Terri Garr was speaking on behalf of Rebif. My biggest fear was seeing people in wheelchairs, thinking that will be me in a few years.. I went anyway, I was curious. I did see alot of people in wheelchairs, mostly all older. There were younger people there but it was hard to tell who had MS when they didn't have a cane next to them. My mom and I were seated at a table with others. We were all wearing name tags. My mom did most of the talking. I was nervous I would get upset. Since then I went to and was in an MS fashion show. It wasn't bad, I went by myself and did alot of talking. If you decide to go you should definately not go alone. Let us know what you decide to do and if you go how the experience was for you.

 



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