[RedPenguins]

Okay - I'm watching the Olympic gymnastic jumping people....not sure what this sport is - they just jump on trampoline and twist and turn and stuff. Okay, not "just" LOL. Anyhow, I'm dizzy just watching them. LOL

Seriously though - I'm in total shock here - and NOT really dizzy - the shock is that I just spent almost an hour outside cleaning out my car - and it must be at least 95 degrees here of pure heat....and I didn't get dizzy or lose my vision...the only thing that happened is that I got sweaty!!! This is amazing. 6 weeks ago - if I went out in anything near this hot, I'd lose my vision (temporarily) by the time I walked down the driveway to my car!! It would then take well over an hour to cool down my body temperature, even if I stood in the freezer and wore cooling vest. I had a terrible time cooling down....and now, I think I'm just like everyone else in this....although, I am going to try to use Biofeedback to learn ways to help regulate my body temp.

In other news, I continue to be mostly symptom-free and am not declining daily. I have not had to use my fatigue meds since July 25th! Prior to that, if I didn't use the meds, I would be a piece of wood within two hous of leaving my house or being awake....could barely hold up my head. And now - I can go all day and be doing stuff and although I'm tired, it is nothing like before. I think my "fatigue" now is more from having a weakened immune system from the chemo itself. I will take this kind of fatigue over the MS type ANY day, for any length of time. The MS fatigue, as many of you know, it totally debilitating. If I never have that again, well, then this treatment is truly a success.

My other symptoms are continuing to clear up. It has been an amazing 6 weeks....total turn around from the previous 6 months. To be honest - although I was "only" sick for 6 months, at the rate I was going, I was in BIG trouble. We always hear how people can continue to live productive lives with MS and won't end up in a wheelchair, etc....I was not one of those "fortunate" people. I mostly surely would have been in a wheelchair by next summer, if not sooner. However, I just got around from moving my walker (now no longer needed) into my garage. It is next to the IV pole that has remained since my last IVSM treatment. Come to think of it - I have no idea where my cane is these days! Haven't needed that either!

Sadly, my double vision started acting up on Wednesday night...however, I had started physical therapy on Wednesday - and I think I may have pushed myself a little too much - though I didn't do much - the therapist mostly moved me, etc.

Yesterday I used my elliptical machine for 5 minutes - and it kicked my butt. Two years ago I was able to use it for nearly 90 minute stretches. Definitely lost much muscle tone. Then I went on to use the treadmill last night for 15 minutes. That's more movement than I've done in 7 months! I gained around 50lbs since I was diagnosed. Not good at all and now I am trying to correct that problem. I think I gained a lot of it during the 6 weeks that I first used Copaxone - as after every shot, I would "reward" myself with a cupcake or brownie or whatever. LOL. This time around, I'm not doing that - I'm just taking my shot like a big girl.

I don't really like the copaxone - and as Cherie mentioned in a previous post, I had problems with it last time around...however, I think a lot of that was psychological as I was gung-ho on getting onto Tysabri at the time, so I needed a 'failure' with Copax. I do have some reactions...but it's only been a little under 2 weeks now. Yesterday I must have hit some kind of vein or something and it bled for quite a bit and now the bruise (big black and blue kinda) is pretty large and ugly. Oh well, small price to pay to possibly have this act as a 'vaccine' to the MS returning any time soon. Also, as far as psychological, I think knowing that the Copax this time around is for a time-limited amount and it has a specific goal....I think that is helping me tolerate it. But like most of this process, only time will tell.

I returned to work 2 weeks ago - although, just a few clients a week. It feels so good to be back - and my clients are thrilled! I hate my wig and feel so fake in it - although it looks close to my hair. My suitemate didn't even know it was a wig and told me she liked my haircut...she was shocked when I told her. I prefer to wear hats - and I have some very funny ones that my friend crocheted for me - they look like the ugly dolls and monsters and have floppy ears and stuff. I will have to take some photos and post them. My hair is starting to grow back on my head - and the rest of my body - I may need to shave my underarms and legs any day now....I haven't had to do that in 6 weeks! I can take a REALLY fast shower - as I have only to wash my body and no hair and no shaving. That's been nice.

I think Phase III trials are starting with HiCy/Reviummune in the coming months. Right now two hospitals in the US are doing this protocol.

And in the coming months, I hope to begin training for my next marathon. I WILL run the NYC Marathon in Fall 2009. I WILL DO IT!

Hope this Saturday is finding everyone well (or at least well enough).

Hugs,

~Keri


ps/man, some of those Olympic guys are certainly hot!

[ewizabeth]

Wow! That sounds great!!! Thanks for sharing! I hope it just gets better and better from now on for you!

[tovaxin_lab_rat]

thanks for the update Keri. I am wondering if the dizziness is due to just regular old heat related problems like some of us have. Sounds like it to me!

Have you started the Copaxone yet? If not, when do you start back on that?

I am glad that you are feeling better and that you continue to do so. Don't push it...especially in the heat.

[MSacorn]

Yay Keri

I'm so thrilled that you're having such success.

I'd love to see the hats, as I'm a crocheter when my hands allow. They sound awesome.

Keep up the great progress.

's

[weeble]

keri, I find your story truly amazing!! good for you.

Blessings,

[PolarExpress]

Wow, Keri! The thing that has struck me the most is the difference in tone of this post compared to any of the posts when you first came here. It's SO good to "hear" you upbeat and positive and hopeful for the future. That alone would make this treatment worth it, I think..
Thanks again for the update, and I hope you do post pictures with your new hats!

[Natalie8]

Keri -- I am just THRILLED for you that you are doing so well.
Great news is always good to hear. Please keep us posted. I'm sending you positive thoughts.

[Bearygood]

Keri, glad to hear you're doing so well. I hope to see you here in 2009! I'll come out to cheer you on if I'm in town!

[RedPenguins]

Thanks everyone!

Beary - oh, I will be there in 2009!!

MsA - I will take pictures shortly. If nothing else, I can post the hats (without me wearing them).

Polar, yeah, my entire world has changed once again. Everything went completely out of control in January when I got sick and I was just starting to adapt and adjust....but it was hard. Now I have to adjust and adapt yet again to this new life of mine -

It is another "new" normal for me - but I guess I can't call it normal yet b/c things are still changing and I have no idea where I will land.

I'm glad my hair is starting to grow back - I miss it terribly....but yes, small price to pay.

Tonight I went on an hour long walk with my friend and g-dson (in the avatar picture with me). It felt GREAT. I haven't been able to do that for so long now....it was unreal.

And yay - I finally put up an avatar! I took this set of photos with my g-dson before I had the treatment, so tha we'd have these memories (and ya know, just in case something happened)


~Keri

[PolarExpress]

And here I thought he was one of your hats , LOL..
What a cutie! Glad you have this opportunity to enjoy things we often take for granted, like walks with ones we love..