Wednesday, July 1, 2009

Periodic Paralysis, Muscular Dystrophy, and a public service announcement if the shoe fits...

http://www.mda.org/publications/Quest/q163infocus.html

Periodic Paralysis is their focus this quarter...thank you MDA!

If you question or have ever questioned my condition, you need to read that whole article. Don't say that I didn't try to help you understand. This is a public service announcement that I will not put up with any ignorance or attitudes from family, friends, or anyone ever again as long as I live.

I have lived in this hell every day since I was a child. It is real. It is serious. I have had chronic pain and weakness for as long as I can remember. I don't know what it's like to be able to do regular every day tasks or function without pain. It is a significant part of my life, and I will strive to bring awareness of this condition for the rest of my days.

You can read a great deal of information about it at the link above, as well as on Wikipedia. It is very accurate.

I appreciate those who have believed me (thank you MawMaw) and supported me throughout the years. My life has not been easy, especially with all of the people who have accused me of lying, whining, exaggerating, faking, and even being a mentally ill hypochondriac. I have had a whole two people come back to me and acknowledge that they were mistaken. The rest are either still in denial or have too much pride. They know who they are and they can kiss my ass. By the grace of God, I am still here, with or without them.

It's in black and white, people. The facts are all right here. The facts have been here all along. I did my part, and will continue to do so. Maybe someday, people will realize that they don't know everything, learn to shut-up, and truly listen.

There would be less suffering in the world if that happened. I would have suffered less. I think about what my life could have been, had I been diagnosed and treated in a timely manner. But there's no sense in thinking about that, because there is only today.

Just today. That's really all that any of us have, if we stop and think about it. So I guess the question is, what are you going to do with today? Seize it and live? Or merely exist.

I choose to embrace life, in spite of my circumstances.

Why don't you join me?

1 comment:

Frances said...

I have been diagnosed with either complex migraines or periodic paralysis... depending on which doctor you talk to. I feel your pain, your anxiety, your ANGER. I am 55 and until 4 years ago I didn't have any real symptoms, but looking back I've remember being called lazy, faker, hypochondriac. Amen to you sister, amen! Franie