You would think that after 15 years of an illness (first symptoms) and 10 of those years being really sick, that I would just accept this stupid disease. That I wouldn't struggle DAY after DAY after DAY with what I CAN'T do. I guess part of me needs to be thankful for that part of my personality, because if I wasn't so stubborn and bull-headed I would have just given up and died. You've got to be determined to live through what I did. Because God can give you all the opportunity in the world with medical treatment, people praying for you, wisdom of doctors and counselors, but it's not worth a thing if you don't fight. God won't MAKE you want to live. He just won't. It's called free will people. And I'll tell ya. I'm not sure about in the hospital (since I was mostly sedated), but there have certainly been times since then where I was almost ready to throw in the towel.
So I thought I was well enough from 2 1/2 days of rest to go to Costco with Doug last night and eat out. Well, that was silly. By the end of dinner I was having trouble chewing and swallowing food. It hasn't been that bad in a loooong time. Today I feel pretty much like the stuff you find sticking to the bottom of your shoe after you walk through the city park or whatever. When will I learn. Probably never! I'm tellin' ya. Acceptance has not been an easy thing for me when it comes to MY limitations or hearing "no." I't's MUCH easier to accomodate others's limitation than my own. Stupid pride I suppose.
Anyway. This last exacerbation has just bummed me out. Wednesday night, I could not tell much difference in the way I felt then compared to the way I felt right before I was hospitalized ten years ago! Now THAT is frustrating. Like 10 years of treatment and medication and thousands of miles to Ann Arbor and hundreds of needle pokes...for that few days, none of it had mattered. And it made.me.sick. And the good news is that could continue to happen at any time until they find a cure, or unless God chooses to heal me this side of heaven.
And when I get this bad, it's like I go into complete "compartmentalize" mode. Like I'm consumed with staying alive through the MG crisis, and I can't concentrate on being a wife, or a mother, or a very good friend. I can't remember how to schedule things or cancel appointments and reschedule others because now I have to go to Ann Arbor. My other conditions take a back seat and I forget to take my shots or check my blood sugar as often as I should. I can't balance the checkbook or pay the bills, and yet all of this seems to need to be done during these times. Figures.
Anyway...don't forget to sign up for my first giveaway! Check it out here http://sickofmg.blogspot.com/2010/03/my-300th-post.html and sign up. Make sure I can somehow get your e-mail, whether you leave it in the comment or have your profile link to it.
Thanks, and good luck!