Saturday, February 3, 2007

A Day Without MS, Is Like A Day Without...?

     Well, you just fill in your OWN blank on the title of this post!  And trust me, I personally wouldn't be putting the word "sunshine" at the end of that sentence either!

     I really, really wish for a day without MS...selfishly, in my OWN life (and it would certainly be OK for any of YOU with MS to have a day without it, too...I'm not THAT selfish! LOL).  I've grown quite bored with this disease...it's just not "fun" anymore...not that it ever WAS fun, but at least I could try to make some sort of medical mystery out of it in my head...at least there used to be somewhat of an element of "intrigue" for me.

     But I've read most of the CRAP in print about Multiple Sclerosis...I've followed the progression of this drug or that...I've TAKEN most of the MS progression-stopper drugs, I've studied up on the nervous system, reviewed my own MRI's, developed a circle of "MS friends", donated money to the MS Society, walked the MS walk, and LIVED in an MS body.  And frankly, I'm just plain bored with it!  LOL

     Today, I awoke with my left foot feeling like it is permanently going to sleep...or at least like waking up from one of those horrible, nerv-y, pins and needles situations, like when I've sat on my leg way too long in some unusual position and cut off the circulation to my Nether Regions.  You know the kind/feeling.  Even NORMAL people report this (just so all of you "normal" people who read CHEESE can relate!  I think there's like maybe TWO of you?!? LOL).  And I have to say, INITIALLY the sensation was "interesting"...for about the first 3 hours.  Now, it's grown most annoying and I'm bored with it, too.

     I stayed home from work today because of the continued and BORING pain in my lower back/hips and weakness in my legs.  And if anyone out there thinks staying at home from work is a "fun" thing for me, let me tell you, it is BORING, too!  There's absolutely nothing about being home from work that is entertaining or in the least bit "fun"...and, considering my least painful position is horizontal and on my side, there's just not a lot of interesting things to do or think about from that angle!

     The self-inflicted chemical burn on my left hand (you know, from the self-medicating with the ancient topical product?!?) IS leaving an interesting scarring...I only wish in hindsight I would have rubbed the goo in with a more "artful" design...the permanent red "V" is...well...BORING.  Oh, had I known...LOL

     I am sadly not looking forward to my infusion of Novantrone on Friday.  Even though I'm sure this latest and greatest medication will be far from BORING, the sense of "excitement" it brings is just not the welcome kind.  I am in anxious anticipation of the one side effect I will hate the most if I have it...nausea.  I'd really rather have a hot poker shoved in my eye than vomit...again, not BORING, but also not welcome!  Of course, I suppose things could be worse...Jaime over at  http://mymsjournal.blogspot.com/  is reporting a recent discovery of substantial HAIR LOSS from Novantrone!  (I have already alerted Dr. She Who Will Not Be Named that I will not tolerate much hair loss from the drug because I have a horribly knobby head and I just don't look good bald!)

     So I guess in summary (you were hoping I'd get to the summation soon, weren't you?), a day without MS for me, would be a like a day without BOREDOM...pure and simple.  Because a day without MS would lend me the opportunity to think about something else for a change...like global warming, Al Franken running for Senate, Miss America's addiction problems.  You know...less "boring" stuff! LOL

3 comments:

mumma4evr said...

yup....get the pins and needles here all the freaking time from topamax that I take for my migraines.  Really six to be an aspiring massage therapist with pins and needles in  the fingers....

Did I ever tell you I cared for a woman with MS in my forner life?  She had MS come on at a young age, late teens, and I took care of her when she was in her early 40's.  Not sure what happened to her, as I married and moved out of the MA.....
Becky

mumma4evr said...

that should read really sux to be an aspiring massage therapist....

why can't there be spell check in the comment section????
Becky

crovira2 said...

A day without MS is like a day without feeling like time has moved on and left the halcyon days of my youth trampled in the dust by the doctors, specialists, EMTs, nurses, aid workers, yaddah, yaddah, yaddah.

MS isn't fun.

Its never was, (though I remember being surprised by what a complex series of systems, all interlocking in a wonderfully choreographed arrangement, the human body really is.

But MS fun? Nah. (I could easily, cheerily, have gone to my grave without ever having experienced MS.)

That being said, apart from playing five tunes, I do go on about it on my podcasts.

But I don't get into the opaque, incomprehensible medical aspects of it.

Frankly that gets old fast.

I'd rather be dealing with, uh, dealing with MS.

MS has become a consuming passion for me, but I'm really hoping that the audience is enjoying the song I pick.