Thursday, May 29, 2008

Who Needs Martha Stewart When You Have MS?

I didn't go to the MS walk this year. I had several very good reasons why I skipped it: 1. Every time I go I get annoyed and/or frustrated by the people who push past rudely to get to the free stuff or don't move an inch when you say, "Excuse me." I'm glad people want to support MS stuff, but if they are there to help a good cause, why are they so rude to those of us suffering from the reason for the walk? I get irritated fighting the crowd and jostling for a chance to go to a booth. B. Last year when I went, I saw 2 ladies that the year before were doing well, but that year one had a trach because she needed the direst oxygen due to a really bad attack, and the other was in a wheelchair and very confused -- unable to follow a basic conversation. This scares me and saddens me very much. Quatro: I do not need anymore MS stuff.

When I was first diagnosed I wore MS shirts all the time so people would know why I was gimping around and burying my face into everything to be able to see it. Now, almost 3.5 years later, I no longer feel the need to tell anyone anything. I am sick to death of all this MS crap I have everywhere. I hate having people come to my house and feel like they entered a quarantined sick person's house. I am trying to put MS second in my life and not let it define me, but it is a stubborn second fiddle that wants to intrude in every facet of my life. I am trying to get away from decorating my house in MS decor, but the free stuff you get from everything makes it hard. I have, in no particular order, a gaggle of MS T-shirts that we now use mainly for sleep shirts. I say "we" because my little sister, Princess and I all wear them and could probably wear them every night for a week and still have clean ones left. I have an MSAA mouse pad that I don't use, I prefer my Spongebob one. I get 2 calendars every year, from NMSS and MSAA and I get very irritable by all the inspiring quotes on them. So much so that they are relegated to areas that I don't have to see them too much. I get the planners every year, the ones where you can track all your symptoms and problems on, which I don't use too often, I prefer a plain notebook. I have a Copaxone and Avonex carry bags that could be handy for travel to stuff books into. I have Copaxone plastic meds containers that I keep colored pencils in. I ditched the 7 day supply one, it was too small to be of use for me. I have about 50 styrofoam coolers that my meds were delivered in that my husband uses for his camping trips and which we give to anyone who needs a cheap cooler that no one cares what happens to. In my freezer are countless gel packs, some even have Copaxone emblazoned on them, which come in handy whenever a kid hurts their mouth. I have Rebif and Copaxone sticky notes that have taken over my life. No matter how many sticky messages I leave, they seem to multiply like cockroaches when no one is looking. I have pens for every DMD and MS society you can think of, some with thick places that you hold on to for shaky hands. I have a Betaseron first aid kit with a handy rope to wear around my neck, which will never happen in this life. I even have a Rebif mini fan with a cord to keep it around my neck and handy at all times. I wouldn't mind using this, but my nieces and nephews love it so much I hardly ever see it. I have plastic cups and mugs that scream about MS and I only use when all else is dirty. I have an Avonex water jug that could hold half the Platte if need be. Somewhere is a Copaxone Walkman with earphones that I have never used. I have an insulated Copaxone water bottle that I use in the back yard when in the pool. I have Rebif sunscreen and Copaxone chapstick. I have magnets, magnets, magnets, with the major DMD companies' numbers on them and ones to the special pharmacy for my special meds because I am special, and I mean that in an I-should-be-wearing-a-helmet kind of way. I would love to be classy and decorate my house in Martha Stewart, but I have a different theme in my house: Multiple Sclerosis. At least they are both MS but one is sold at K-Mart.



Now THAT'S the Blindbeard I know and Love!!!! OMG...I am snorting with laughter. I may have to go run and get my Avonex-stamped handkerchief to blow my nose, I am laughing so hard...

Linda D. in Seattle

Stephen said...

right on. at the last walk i went to, i told the woman in charge that i thought the biggest honors should go to the people who staggered around the mile on crutches, and not to rich people who wrote checks - the REAL heroes. and when "ms awareness week" came, i said, i'm already more aware of ms than i'd like. just went to a lecture sponsored by teva (makers of copaxone), they were giving out bottles of hand cream, and i asked if it was infused with copaxone. they didn't think it was funny.