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Posted: Fri Apr 01, 2011 9:35 am
by bestadmom
Bluesky, when you get here, we need to meet, and Wheelchair Kamikaze too and there's a bunch others of us in the area. PM me so we can exchange info.
Michelle
Posted: Fri Apr 01, 2011 10:53 am
by cheerleader
BAM (that's how I say bestadmom)---
you're right...NYC is much more negotiable for disabled people. The suburbs/exurbs can be isolating. I take it all back. Johnson should move to NYC, and then we can all visit/sleep on his sofa and paint the town. Really happy to hear Bluesky is making the trek.
cheer
Posted: Fri Apr 01, 2011 11:45 am
by Cece
aw I want to meet bluesky too!! New Yorkers have all the fun.
Cheer, thanks for bothering! I agree that anyone who had veins that looked like mine or any of ours should know about it.
Posted: Mon Apr 04, 2011 7:54 am
by magoo
Joan, because you bothered our lives have changed for the better. More hope, more knowledge, more community and more life. Thank you.

Posted: Mon Apr 04, 2011 10:18 am
by gibbledygook
Cheereo! I wouldn't have a big, bouncy baby boy if it weren't for you and this website. So thank you.
Posted: Mon Apr 04, 2011 10:27 am
by WeWillBeatMS
Cheerleader,
Since this seems like it is becoming an unofficial praise party for you, I must weigh in.
For the past six years, since first being diagnosed with MS, I have wanted nothing more than to just get better and get on with my life. I've viewed it as nothing more than an absolute annoyance and something to be defeated and then forgotten. Pretty selfish viewpoint for the most part, even if common. But since finding out about CCSVI for the first time in January 2010, I've seen your selfless post after post in here. Your love for your husband is clearly unmeasurable and all of us suffering with this stupid disease get to be the recipients of the spillover of your love for him. You inspire me and I know many other people too. I'm starting to think twice about my selfish "fix it and forget it attitude about MS".
I'm truly amazed at your dedication to help the community of pwMS and I'm very grateful.
After a long struggle to "go local" down here in South Florida, I have decided to go ahead and follow Nunzio's lead and head to NYC for the Liberation Procedure w/ Dr. Sclafani next month. My wife and I are optimistic that my physical future can be MUCH better than what many doctors have told me it is.
Thanks for bothering to be our cheerleader.
WeWillBeatMS
Posted: Mon Apr 04, 2011 6:25 pm
by cathyb
Cheer,
You looked for those of us (specifically, ME) who didn't think to look. You questioned where it never occurred to me to question. I bought the whole thing, from diagnosis to treatment. My eyes are open, and for the first time in my life I am questioning this disease and asking doctors things like: "Wait, WHY are you saying this? WHAT is your reasoning?". As a special bonus, I am now a top notch advocate for my children as well. So, THANK YOU, THANK YOU, THANK YOU. A million thank yous will never be enough to express my gratitude.
Cathy