“Try on MS” at Pacific Place

April 22, 2010

The video from the NMSS Greater Northwest Chapter’s “Try on MS” event at Pacific Place during MS Awareness Week last month is up. Events and videos like this are really important for helping people to understand what living with MS every day is like for so many people.

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my so-called double life

March 23, 2010

My close friends and some trusted co-workers know about my multiple sclerosis, but I conceal it from more casual acquaintances, colleagues and professional contacts. It’s a tricky balancing act, keeping my MS a secret from some people while disclosing to others. It’s getting harder and harder to keep the two sides of my life separated.

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w00t #hcr

March 21, 2010

It looks like the health care reform bill is going to pass and it’s about effing time. I’m watching/listening to the live stream of the health care reform debate on C-SPAN right now–Pelosi has the floor, wrapping up a long day of speechifying and mudslinging. For the Republicans who continue to bash the bill, STFU [...]

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multiple sclerosis theme song!

March 4, 2010

Or, at least, it’s the Tingly Feeling theme song. “Pins and Needles,” by Project Jenny, Project Jan, (featuring Fujiya and Miyagi) actually makes paresthesia (which, FYI, sucks) sound sexy. A friend of mine put this on his January mix for our Mixtape Club (nerd alert) and every time I hear it, it makes me so [...]

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slip into our skin

February 25, 2010

This MS road show, dubbed “Try On MS” by the Greater Washington chapter of the MS Society, is coming to Pacific Place in downtown Seattle. They’ll be at the 6th and Pine entrance on March 9, from 11am to 2pm and I’m going to check it out–and drag a few co-workers and friends along with me.

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the incredible shrinking woman

February 14, 2010

As if having MS wasn’t bad enough, I’ve been losing weight over the last 6-9 months and I don’t know why. I just read that this could be a side effect of the drug I inject weekly, Avonex, which has been known to cause thyroid problems (awesome): Some people taking AVONEX┬« develop changes in the [...]

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new sensations

January 31, 2010

This whole business with the MS originated in my lower right leg. The numbness mostly affects my mid-to-outer shin and wraps around to stop in the middle of my calf. Tapping the skin there just feels like a dull thudding. I’ve come to accept these symptoms as the norm. It is what it is. But lately, the leg has been bothering me more.

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of hamsters and hookworms

January 29, 2010

So I heard something crazy last week at my monthly MS support group. We were talking about drugs and why they’re so #*&^@! expensive. As usually happens at my support group, I learned things that I should probably already know. For instance: did you know that Rebif and Avonex, the latter of which I currently [...]

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happy new year

January 4, 2010

So as I approach my next personal temporal marker–my second anniversary of living with MS is in March–I realize that in terms of living with this disease, I’m a toddler. I’m just figuring out how my new world works. I don’t know what’s best for me. But I’ve learned a few things in my short life with this disease.

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group hug

December 16, 2009

I met with my MS support group tonight. There are about 5 or 6 of us who regularly attend our monthly meetings and it’s always good to check in with each other and hear what’s the what in the what what. I’ve learned a lot from these people. Mega hugs to them. I’ve been a [...]

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