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Multiple Sclerosis Awareness Week

So. March 5 - 11 is, according to the National MS Society, Multiple Sclerosis Awareness Week. They've got a new campaign called "Join the Movement" which seems a bit hokey to me, but anything designed to promote awareness of MS is a good thing, as far as I'm concerned. They sent me some information and a nifty little cling decal thingy which I put on my car. So there you go. It's MS awareness week!

The other thing I've been pleased to discover is that Microsoft has created a new IM-centric initiative where, if you join, they donate to your chosen charity every time you start an IM conversation with someone. It's called "i'm" and you can get more info about it here. The National MS Society is one of the causes, as is ninemillion.org, Susan G. Komen for the Cure, the Red Cross, Unicef and the National AIDS Fund, among others. This is, no doubt, more about Microsoft marketing its IM client than it is about helping others but still... they are, in fact, helping others! And that, too, is a good thing. (Far be it from me to knock a win-win situation, after all!) From the fact sheet:

With no set cap on the amount donated to each organization, the more i’m conversations you have, the more money goes to confronting some of the world’s most urgent social issues. Each participating organization is guaranteed a minimum donation of $100,000 during the first year of the program.

One hundred grand the first year? COOL. Start chattin', people!

Speaking of MS, I'm continuing to take the Avonex and despite the improvements in the side effects I experience, I'm still spending at least one day a week where I don't feel all that great. Not awful, just not fine. So this week I decided to monkey with the time of my Avonex injection. Yesterday I gave myself the injection around 8:30 a.m. instead of in the afternoon, with the thinking that the side effects usually kick in around 10 hours after the injection and then I would be feeling crummy for a couple hours in the evening and then sleep through the rest of the side effects. It seemed to work ok - I started to feel kinda yucky by about 6 but woke up this morning feeling just fine. So I may try this again next week to see how I do.

In other news...

  • My new glasses are ready - just gotta go pick them up!
  • My inflamed eyelid is mostly better. I'm still wearing my glasses because, well, I'm kind of lazy. And also, I don't want to re-inflame my eyelid. I'll probably just wear them until I go see the eye doc again on Tuesday and if he gives me the green light I'll start back with the contacts. Or maybe I'll like my new glasses enough that I'll abandon the contacts altogether. Hard to say. :-P I doubt it, though; I see much better with my contacts.
  • I've got an appointment with a naturopath in two weeks, and was today given the name of a good acupuncturist by my chiropractor. I'm going to do some exploration of alternative medicines to see if I can't get rid of the last few MS symptoms from my June relapse. My neuro told me he didn't think any more Solu-Medrol would help, so I may as well give the alternative stuff a try. I've had mixed experiences with acupuncture in the past (it cured me of TMJ, but did nothing for my IT Band Syndrome) so I figure it certainly couldn't hurt and it could help. (You MSers out there: have any of you tried acupuncture or naturopathic medicine for symptom management? Has any of it helped?)
  • I have my "formal" review on Thursday at work. I can't believe I've been back a full year! (...and what a year it's been. sheesh!)
  • I now have an additional 4 weeks of time off (extended leave) to take over the next two years! I can either take it all in one lump sum (with two weeks of personal leave tacked on, if I choose) or I can take it over time like my regular vacation time. I've been thinking about how I want to handle this and going back to part time, for 6 months or so, seems like a good idea... But then, I can also cash out some of the time, or just hang on to it for a while until I have a solid idea of what I want to do. My usual MO: when in doubt, wait. The correct answer may come to light while I'm sitting around waffling about the best next move.
  • I bought one of these window-mount hummingbird feeders last winter, and as it was so warm out today I decided it was time to fill it up and stick it outside. It's on my office window so I'll be able to see when the little hummers start showing up! I can't wait. No hummers yet, but I'm on the lookout! I'm hoping I'll be able to capture a few pics of them as well... we shall see, though.
So that's where I'm at today... I hope you're all well and - for those of you in the PacNW - that you're enjoying the beautiful weather we're having.

Comments

Ohhh, I've always wanted to put up a hummingbird feeder ... but I could never pay enough attention to it to actually see one use it. My mother has one set up and she is much more fortunate with the bird-spotting than I.

i time my avonex injection to sleep through it too, and it's been working well. i find that i start to feel sick about 3 or 4 hours after i do the shot and then i feel almost all better by the time 12 hours has elapsed. so i take the shot around 6pm, go to bed when i start to feel sick, and by the time i wake up i feel almost good as new.

i don't have experience with alternative or complementary therapies but i'll be interested to hear how the acupuncture works out. i used to shun acupuncture because of a fear of needles, but now that i give myself shots i've pretty much banished that problem!

Yes, I too, have "issues" with the MS "movement"...never know if that is something that will be constipating or more like diarrhea!!!

Glad to hear you are feeling a bit better...and OH YES, that weather yesterday was fabulouso!

Linda D. in Seattle


"I could have me a million more friends, and all I'd have to lose is my point of view."

~John Prine

My Multiple Sclerosis Diagnosis

On June 23, 2006, I was diagnosed with Multiple Sclerosis. Among other topics, this blog is devoted to my ongoing experience with the disease.

Pharmaceuticals

Shortly after my MS diagnosis, I began taking Avonex. Although I managed to mitigate the "flu-like" side effects, for the most part, the drug unfortunately seemed to exacerbate my clinical depression.

So, on July 19, 2007 I switched to Copaxone.The Copaxone worked quite well for a couple months - except for some minor issues with injection-site reactions - and I felt much better.

Unfortunately, the Copaxone also exacerbated my depression. So I met with my psychiatrist to find a mix of anti-depressants that would counteract the debilitating depression I experienced. After spending most of December 2007 in a complete funk and - some days - being totally unable to leave the house, I finally stopped taking the Copaxone on my own. I immediately began to feel better and with some help from my primary care doc - who discovered I also had a mild case of hypothyroidism - I started to feel like myself again.

On May 16, 2008, I had my first infusion of Tysabri. With the exception of some anxiety issues, I've had no trouble with it so far. Still, it's early and the jury is still out... stay tuned for ongoing updates!

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