MS 150 - Now I'm riding for me.......

[gretassister]

geochick, I pedged 25 dollars. Good luck raising the 6,000 !! You can do it !

[geochick]

Thank you so much to everyone!

Yesterday, I hesitated before I made my post - I wasn't sure how "appropriate" it was, but I am SO GLAD that I did. Somehow, I just knew it would be the right thing to do. And the support I have already gotten is so wonderful.

And I'll keep you posted on my tests - I'm going in for the lumbar puncture in 2 weeks (they wanted to do it next week but hubby has to be out of town and I really want him to be there, just in case I have any problems after the fact). I will need lots of hugs and cookies after that one!!!!

You are all so wonderful!

[SadieKate]

Geochick, yes, have someone at home with you for the lumbar puncture. Only a very few people have problems but if you do you want someone to be there for a bit just so you don't have to keep standing up and definitely to drive you home. I was one of the lucky tiny minority and got a spinal headache for almost a week, but I have a migraine/headache history which probably gave me more sensitivity to the drop in pressure. I then drank 6 liters of water a day trying to push liquids which meant I had to stand up extra times -- the doc's office didn't quite get the fact that cyclists push liquids a bit more than normal folk. The neuro finally figured out that I was extra miserable because I wasn't getting my normal endorphin fix. As long as I stayed lying down there was no head pain. The puncture itself wasn't that big a deal and wasn't that uncomfortable. Probably lots of people on this forum can relate their own lumbar puncture experiences.

Keep in touch.

SK

[SadieKate]

Everyone should be inspired by the story of this team. Biogen Idec is the company who makes Avonex, one of the 4 main MS drugs. They sponsor a talented cycling team with two members diagnosed with MS.

http://www.teambiogenidec.com/

[profà vélo]

Hey, Geochick,

Way to go for riding! I had an 'episode' an was diagnosed with MS in 1992. As you know, it's wildly unpredictable. I have been so fortunate in that I have had no subsequent episodes, and at my last neurological checkup, the doc could see no signs of MS. It's great that you are already hooked up with the National MS Society .

That same year I was diagnosed, I walked in my first MS Walk. I think it was 5 miles. I did several more of those in the following years, always with a team of friends and family. In 2002, I talked my mom--who was 57 at the time--into doing the MS Challenge Walk, which is 50 miles in 2 and a half days. Then last year I got a small team together for the SC MS 150, 'Breakaway to the Beach.' (I have to say, the bike ride was much easier than the big walk!) I wasn't going to do it again this year, but couldn't resist participating in the 20th anniversary of 'BTTB,' so we're at it again, and our team has grown from 7 to 12.

I feel like I have to ride, or walk, as long as I am able, so that there will be a cure by the time I have another episode. I wish for you a great ride in October and the ability to keep riding for a very long time.

[geochick]

So, it's been an interesting couple of weeks, but things are going okay. I really like my doc - more and more each time I visit him. He admits when he's wrong (score points) and doesn't believe in doing additional "unnecessary" tests (score major points!).

I had the evoked potential tests last monday and was scheduled for the lumbar puncture afterward. The results from the EP were sufficient to confirm the diagnosis, so I didn't have to endure the LP!!!! How happy was I?! Actually, at first I was kinda in shock about it, I was concerned that the insurance co. would deny coverage for my treatment, but he assured me that they would not - we just didn't need to present additional evidence when what we had was sufficient.

And, of course, he was right, becuase the insurance co. approved my treatment within 24 hours of the request.

So, I'll be starting my Rebif in a couple of weeks - October 7. Our MS 150 is October 1 & @2, so I want to wait until after that.

Thanks again to everyone for your warm wishes, love, support and encouragement. (And cookies.) Special thanks go out to SadieKate for the temporary tattoos. I will wear them PROUDLY during the ride!!!

[Bike Goddess]

Geochick- Just came upon this thread today. Dave (whom I live with) has a sister who has MS. So I am touched in a distant way by this disease.

You know out here in California AIDS and Cancer get a lot of publicity. MS seems to take the back seat much of the time. What you are doing and what the TNT group does is so very valuable at raising public awareness of what MS is all about. And, Sadie Kate has been a real inspiration to all of us who have had the pleasure of meeting and riding with her.

Please let us know how it goes for you this weekend. You will be in my thoughts.

[Trek420]

Bike Goddess writes "Dave (whom I live with) has a sister who has MS. So I am touched in a distant way by this disease."

I think we're all touched by it

"here in California AIDS and Cancer get a lot of publicity. MS seems to take the back seat much of the time."

Sorry to politicise the board wouldn't it be a great day if the Navy had a bike-athon to build an aircraft carrier and our schools, health care, medical research had all the money they need? I hate it when good causes all have to fight each other for money/attention.

We could cure almost all I think if our prioritys were not so skewed.

"What you are doing and what the TNT group does is so very valuable at raising public awareness of what MS is all about. And, Sadie Kate has been a real inspiration to all of us who have had the pleasure of meeting and riding with her."

I agree, hats off to all our TE gals, inspiring and raiseing awareness, saveing turtles, saveing lives.

[Bustertb]

Geochick, so sorry to hear about the dx'd. I was dx'd with MS 3 yrs ago. I'm sure sadiek. and profÃ*vélo can give you some good advice too. I am on Avonex. Thankfully my hubby is a big support and the MS ctr of Atlanta has a good staff. I think it is very good to do alot of research on your own and read all you can. There is alot of information out there and the medical field is very good about getting info about the news drugs out to the public. I just hate that it takes up so much of my time. It seems like I have to schedule my life around this disease. It steals from me. It steals my life, health, emtions, etc. I HATE it. So keep fighting it. Even when you have to lay down and rest...do so, but keep that strong attitude you possess girl !

If you have any questions or need to talk, please post. We need each other because like I always say, "healthy people cannot understand sick people. Not because they don't want to. It's just they can't. Unless you go thru it, you can't understand fully."

[bikerchick68]

geo... I just came across this post today... wow, what an emotional roller coaster this must be right now...

I've no experience with MS myself, but am adding my T's and P's... glad you have a good doc... that makes a world of difference...

sadiekate... I have seen the post about the Amici Veloce jersey in the general forum but DID NOT know the significance... very cool. The cycling community is amazingly supportive in so many ways to so many people...

[Bustertb]

Here's a link that has info that might be helpful.

http://www.healthtalk.com/index.cfm

[AllezGirl]

Hi Geochick...how was the ride?

[jeannierides]

Hi Geochick! I missed the original post. So sorry to hear your diagnosis! My prayers (and virtual cookies) will be sent your way ~ as with the other gals.
How did the ride go?