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kcw9hurricane
04-28-2006, 07:31 AM
no laughing!!! I am planning to run the Disney Marathon in January 2008 to raise money for lupus.

Anyone have any ideas on how to go about forming a Lupus team?? Anyone want to join me?

Saysusie
04-28-2006, 11:24 AM
Hi KCw9hurricane:
Where is the marathon being run? Is there a web-site that we can go to for details about the marathon? This is the first I've heard about it and would like to participate.
Sorry, I know nothing about how to put a team together. Perhaps someone else will have some information for you :?

Peace and Blessings
Saysusie

kcw9hurricane
04-29-2006, 05:20 AM
There are always marathons. I want to run the Disney marathon in Florida. People form teams and run for many different reasons. I want to either form a team to run for Lupus or run myself and raise money.

Disney has a marathon every January. This January just isn't do-able for me but I can plan for next January. The trail runs through all the theme parks and is mainly flat.

The web site is www.disneyworldsports.com.

Saysusie
05-01-2006, 10:06 AM
Thank You So much for the information. I am really excited about doing the exact same thing out here in California! :lol:

Peace and Blessings
Saysusie

Sheryl
05-13-2006, 07:34 AM
Hi there Hurricane!
I was so excited to see this post topic!! (Can you tell by all the exclamation points!!) I was just diagnosed with lupus at the end of April and I am still coming to terms with what it is going to mean for my life and my future.

But I have always wanted to run a marathon - it was one of the dreams that I put off until "later." Now that I have gotten sick I have been so depressed about the fact that I might never do it.

But if you are serious about going after this, I would love to be on your team and share training goals and support each other.

Just think of it - a whole team of Lupies running a marathon!! - this is the most excited I have been about the future since I got this diagnosis!!

kcw9hurricane
05-13-2006, 07:46 AM
I have to tell you...your excitement gets me excited about the future. On days when I hardly have enough energy to climb the steps, I still look forward to running.

I started running at the age of 29 when I had a heart attack for the first time. I was 270 lbs and the doc said either lose the wt or die. I am now 153 and still losing. Now that there is an even better reason to run, I am so excited that someone might join me.

I am in PA. If you aren't close by, we can still run "together" and plan for the marathon...any marathon.

I look forward to talking to you more.

Sheryl
05-13-2006, 08:14 AM
WOW! That is a great accomplishment!! You should be so proud of you. :D Running gets addicting doesn't it?

I started running about five years ago, and have been "on and off" since then, but always think about doing a marathon some day. I have only worked up to the point of running about 5 miles three days a week, then I end up slacking again. I was just starting to go back to running when I got sick with this whole mess - but I'm ready to try again. I don't know how much I can do, but now I am motivated to go give it a try (as soon as I get out of bed and shut down this laptop. LOL)

I am in Washington State so we won't be able to do too much training together, but, hey - that's what's so great about the internet! My best friends are all people I met on line, and are all over the country. Makes for lots of good vacations!

The Disney Marathon sounds like a good one - I liked your description of the course - since I mostly run on a flat track, I HATE hills. :wink:

I think it will be really motivating to us, and to anyone else diagnosed with lupus to know that you can still follow your dreams. Plus maybe we can raise some serious funds and awareness of lupus.

LET'S DO IT!

kcw9hurricane
05-13-2006, 09:39 AM
HI Sheryl, I sent you a personal message. Let me know if you got it or not!!!

Sheryl
05-15-2006, 07:12 AM
Well, no running for me today. After a month of recovering from my symptoms, I had a pretty major relapse yesterday. I'm sort of back to square one - but I WILL do this.

I need to get the doc on the phone as soon as they open. Probably more prednisone. :(

Does anyone else have a lot of negative side effects from prednisone? Last time I got a horrible itchy rash over my whole body, plus night sweats by the gallon and serious insomnia.... yuck. I thought the cure was worse than the sickness but after 24 hours of back pain I'm changing my mind.

kcw9hurricane
05-15-2006, 03:42 PM
I have heard horror stories of prednisone. I refused to let them put me on it out of fear.

No running for me either. I spent my day in the ER. I was having SVT's and arrythmias. May put me on beta blockers to keep my heart regular since I have already had 2 heart attacks. I am feeling ok just a little chest pain but hey, like they say, I'm above grass so all is well.

Sheryl
05-15-2006, 04:45 PM
Yeah, I didn't like the pred. the first time, so I turned it down when they suggested it again, but I would gobble it up in a minute right now, if it would get rid of this back pain. My numbness is also SO much worse today, and it's so frustrating just when I was getting better. Oh well, I can get better again. I am going to have to skip my yoga class tonight though, I think. Hard to do yoga when you can't feel your feet. :roll:

I am sorry to hear you ended up in the ER. :cry:
Did your heart settle back down without any more meds?

kcw9hurricane
05-16-2006, 10:27 AM
No meds but I had problems all evening. Going to start beta blockers tomorrow. SVT's can cause heart attacks and cardiac arrest. WIth my history of MI's they want to start it ASAP. Oddly enough, my cardiologist isn't concerned at all. My primary doc is the one that wants me on them. So, another med on board. Will let you know how it goes.

Sheryl
05-16-2006, 03:20 PM
What's one more med, eh? I am thinking I have to get one of those daily pill organizers like my mom (heart valve replacement and triple bypass survivor) used to have. It took me two days of phone calls to finally get a steroid perscription called in. Meantime I'm stumbling around because I can't feel my feet. :x

Doctors never quite make sense - I guess my rheum. is in charge of me now since lupus is my diagnosis, even though all my symptoms are neurological, and it made so much more sense to me to have the neuro. treat them. Sometimes being sick is a lot of work. :?

robbie
05-17-2006, 10:27 AM
I'm new and interested in the marathon and if someone could email me off line I would appreciate help knowing how to respond to posts and the approropriate way to be a part of the board. I'm not very computer literate.

Sheryl
05-17-2006, 01:13 PM
Hi Robbie -
Don't worry about the computer stuff - you'll catch on... So far it's just me and the Hurricane who are hoping to run a marathon in January of 2008. But we are hoping to form a whole team of Lupies.

When I have a little more time I'll PM (private message) you some more details.

The message at the top will tell you "you have one message" when I've actually done that.

Look forward to getting to know you!

Saysusie
05-17-2006, 02:36 PM
Sheryl;
I am planning to run in January, but I thot it was 2007, not 2008 :lol:
Sorry, I guess I didn't quite make that clear in my posts. But, I am starting my training now hoping that I can make it in January. I've got almost two years, so I figure I'll be ready by then!! So, count me in on your team!

Saysusie

kcw9hurricane
05-17-2006, 02:56 PM
I am planning to run in 2008 b/c January 2007 is just too soon for me with all that is going on.

Sheryl
05-17-2006, 06:48 PM
Cool Saysusie! I'm glad to hear you're considering it. Are you going to look for a marathon on the west coast, or go to the one in Disneyland?

ALLoWeyo
05-18-2006, 05:33 AM
me and my puppy are training for walks. (He's a chihuahua so the walks have to be kinda short.) I'm making him a shirt with a lupus saying on it (if anyone knows a good lupus foundation with a website, let me know and I'll make him a shirt and walk him with it.) Do you guys just push through the pain when you walk? Walking hurts so much...

Saysusie
05-22-2006, 08:12 AM
I am going to the one at Disneyland since I am only an hour from Anaheim. I am definately going to do this :lol:

Saysusie

Sheryl
05-22-2006, 09:45 AM
You know what? I am mixing up my Disneylands and Disneyworlds.... I can never keep that straight. I think Hurricane is talking about the one in Florida!

But we can have a coast-to-coast event!

Saysusie
05-22-2006, 09:49 AM
No problem - If Disneyland in Anaheim is not involved, I will still try to get my own team out here and run :lol:

Saysusie