12/28/08

I wuuldn't wish this on anybody.

I mean, all the aggravation of tests and more tests (and more tests on top of that), not knowing what is wrong with you, dealing with puzzling (or troubling) symptoms that alter your way of living, and then the Big Blow: finding out what is wrong with you, changing your life forever...let's face it:  it's the pits!!

Also, dealing with pompous, callous doctors who don't know anything, insurance companies, choosing the right walking (or mobility) aid so you can get around easier, and then finding out that you've been laid off your job.  This is exactly what I have been experiencing, and I've been an emotional wreck because of it.

My name is Edwina.  My friends call me Eddie.  I live in Charleston, South Carolina, with my mom and dad.  I have multiple sclerosis.  I was diagnosed six months ago, and life for me hasn't been the same.

Some days I do pretty good:  I can get by with just a cane and hardly any symptoms of my disease acting up.  On other days, however, it is all I can do to keep from falling over, and to boot, I have trouble with my eyes, which only aggravates my balance problems.  I can't tell you how many times I've stumbled (or actually fallen onto the ground)!

Today is a two-crutch day.  I am using my bright pink forearm crutches; I don't trust my feet or my balance.  I feel wobbly, unsteady, unsure of where my feet are going to take me.

Later on, I may end up doing better, but for now, I need a little support; I have that in my crutches.

I don't like my crutches.  I keep tripping on them, or worse, the arm bands pinch me.  I already have some nice bruises on my elbow area from where the crutches sprouted teeth and bit the crappola out of my elbows.  Also, it's hard to try to carry things when I'm on my crutches.

The worst thing is when people see me struggling to carry something, and they don't even bother to assist me.  They think it's funny to watch the crippled lady on crutches arguing with her bag of groceries or whatever else she's trying to carry.

I mean, I'm like, HelLO!! I need help here!!  Oh, does that ever tick me off!  BIG time!!

Or I'll be standing in line at the bank, and people'll run into me.  Sometimes they'll do it on purpose, just to get a laugh, especially if I lose my balance.

I know this isn't very nice, but I hope one day they end up in the predicament I'm in.  Then they'll see that being disabled/having multiple sclerosis or some other insidious disease is no picnic!!

Guess I'm having a pity party.  So sue me.  I'm entitled to those once in a while, especially when my MS is giving me no END of trouble!!

I know I'm not alone, as many famous people (Annette Funicello of "Mickey Mouse Club Fame", David Landers of "Happy Days" [I think that's his name; he played Sqiggy], country singers Donna Fargo and Clay Walker, etc.) have MS; I'm in good company.  Still, when I'm having a bad flareup of my disease, I sometimes feel like I'm the only person in the world going through this, and this is when I feel alone, isolated, even scared.

Sometimes my friends don't understand why some days I rely on my crutches or on extra-bad days, my electric scooter or my wheelchair while on other days, I'm just using one cane and act like everything's fine.  They think I'm faking it, and they think I'm only using these medical appliances as a way to draw attention to myself, gain sympathy.

Right. 

And they think I enjoy falling down flat on my face, having more bruises or bumps sprout up on my elbows, having painful muscle spasms, problems with my eyes or speech, or whatever else fun thing that my MS decides to throw my way. 

WRONG-O!!

Tell that to my doctors, that I am faking it.  I don't THINK so!  I have a legitimate problem that manifests itself in bizarre ways:  I don't know one day to the next what MS will give to me.  All I DO know is this:  heat bothers the shit out of me.  On cool, or even cold, frosty days, I'm fine; meanwhile, when it gets past 70 degrees, I'm like DYING here!!  It's beyond awful!!

Same goes if I have a hot bath or shower.  I avoid those like the plague.  Not the baths, per se; I just bathe in cool or lukewarm water; it relaxes my body in ways I can't even begin to dream of!

Well, my darn bladder's talking to me; let's see if Eddie can get to the bathroom without landing on her face or at least an imprint of the door on her snout.  I will write in here again soon; take care, and say a prayer for me!  Thanks; I apreciate it!

Bye!

~Eddie (Edwina) Therese Maria Garcia.  :(

*To be continued.*