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

[geochick]

Hi ladies. I've been having a helluva week. I was diagnosed with MS yesterday. :(

After I left the neurologist's office, I stopped by the NMSS office in town and talked to a lady there for a long time. She listened and answered my questions, handed me a tissue for my tears, assured me that I'm not alone, and gave me a lot of information about this disease. I went into the office shellshocked. I left it feeling like I'm going to be okay. And my husband will be okay. We may have to make some adjustments along the way, but we'll survive this.

That is why I'm riding to raise money for this organization. Because it is made of ordinary people doing extraordinary things like listening and giving hope to people like me who feel like they've just been suckerpunched.

My husband and I, along with several people that I work with, have been preparing to participate in the MS 150 - Ride to Jack and Back. If anyone is interested in sponsoring me, here's the link to my page:
http://www.nationalmssociety.org//TNS/personal/default.asp?pa=51721582&pd=TNS0EMS120051001JAC

Will you help? Any amount you can donate will be greatly appreciated!! Thank you.

[Grog]

What a shock !

All of my thoughts are with you Geochick. I know you will not only be okay, but strong too.

Big hugs (and cookies)

[CorsairMac]

((geo)) my thoughts and prayers go out to you hun! I can't even imagine what must've gone through your mind when you heard the news. How wonderful to have meet such a kind and understanding person at the NMSS office.

when is your ride?

[geochick]

It wasn't completely unexpected, but it was still definitely a blow.

Thanks for your words of encouragement and I'm pretty sure I'll be needing lots of hugs AND cookies.....

[geochick]

when is your ride?


October 1 and 2.

[SadieKate]

Geochick, August 25, 2005 was THE day for me and Oct 1 is my birthday so you'll be riding double for me.

You've probably seen all the activity going on with the Amici Veloci jerseys? This is how it all started. I was diagnosed, was going through a terrible period getting used to the DX and the drug, and turned to this group. I decided that I wanted to ride the Top Hat Classic out here in California and all of a sudden this group* said "we want to ride with you!" I'm now sitting here in tears thinking about what the last year has been like because of them.

I've ridden more hills than I thought I ever would, started racing short time trials, ridden more centuries than usual, and made some wonderful friends. Some ride with me in body and some in spirit, and I'm a better person because of them. They helped me persevere through a dark time.

Hang in there and PM me if you want. If you send me your address, I'll send you some of the Amici Veloci temp tattoos we all wore for the ride. Most of all STAY POSITVE. I know, easier said than done. I'll be thinking of you.

SadieKate

*Amici Veloci team riders at the Top Hat: Captain Jobob, Snapdragen, aka_Kim, Veronica and Adventure Girl. OK, jobob, slap me upside the head because I probably forgot someone.

[Trek420]

when does registration open up for the 2006 Top Hat?

I couldn't do it in 2004 because my Dad had just died, couldn't do it in 2005 because we had the memorial service/picnic the year later (that's traditional since I'm Jewish that the service is a year later, although nothing else about the service including that it was a picnic was traditional).

Not to be macabre or anything but everyone in the family looks fine so far so I'll pencil it in

[SadieKate]

when does registration open up for the 2006 Top Hat?Don't know. It took them forever to get it up on the web last year. The ride itself was April 30th. http://www.nationalmssociety.org/MSBike-California.asp

[Adventure Girl]

Amici Veloci team riders at the Top Hat: Captain Jobob, Snapdragen, aka_Kim, Veronica and Adventure Girl. OK, jobob, slap me upside the head because I probably forgot someone.Can I do the slapping? There were actually 7 TE members on the Top Hat team. Missing from the list... Petunia and, uh... SadieKate :o

[Adventure Girl]

Oh... and ON TOPIC, geochick, stay strong and positive!

[SadieKate]

Can I do the slapping? There were actually 7 TE members on the Top Hat team. Missing from the list... Petunia and, uh... SadieKate :oWell, Petunia signed up after the fact. You gals were the core rah-rah girls! I've still got the pom-poms though they are a little worse for wear. Jason decided that he and a friend's little girl would use them as wigs during the Davis Crit.

[Pax]

((((Geo)))) Big hugs for you! Keep your spirits up and know that you're getting tons of positive vibes sent your way.

[gretassister]

Geochick, I've done MS rides myself and my husband and I walk every year. His sister has MS. My thoughts and prayers to you and I'll see what I can do about sponsoring you, too. :)

[DirtDiva]

{{{geochick}}} Virtual Tim Tams (they're chocky bickies/cookies) to you.

[Trek420]

geochick {{{hugs}}}and Virtual cookwees (they're cookies you can only get in Hawaii, very good, very crisp.)

[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 :eek: 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. :eek: 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/

[profàvélo]

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 (http://www.nmss.org/) .

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 :confused: 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 profàvélo 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."
:cool:

[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?