Back on the stigma subject, here is what comes to mind for me. We are inundated with drug commercials, and no matter how bad the illness that the med is for, it shows these people still in the normal flow of life, or able to return to it.
Next commercial is for laser spinal surgery, incision covered by a band aid, on their feet in no time, and they're out playing golf, or on rides at the carnival, or running through a meadow... Makes everyone think the's a magic fix for everything!
Not so! People sometimes think you don't want to get better, as they think there's always a way to return to normal.
I may be off base, but this is what comes to mind!
I don't want to be mad at god, but what choice do I have. what kind of good god would make the gorgeous heavens and earth, and then turn right around and give a person like myself so much pain in my body that al I want to do is cry and scream, the pain is so bad.
I really do understand, Jayme! I have my issues with God too! It's bad enough that adults have to suffer, I have tremendous empathy for them, but it's the sick kids that make me the most angry! And I don't want to live angry either!
I've been really struggling with the intense pain lately, and it really robs you of just about everything, especially your personality!
Jayme, is your Doctor doing anything to treat your pain, or are you just 'being dismissed'?
I don't know why I even bother seeing my neurologist, she doesn't really do anything for me, or my conditon.
Don't misunderstand me, she's a fine doctor, I'm sure, but when I've seen her, she is just there to listen to me and nod her head. Of course, I'm the only person to ever have M.D., C.M.T., and hypokalemic periodic paralysis, ( thanks god you big a****** ) These three conditions aren't even listed together, on the medical books, medical students are being taught about these conditions SEPERATELY, but not together. As far as my doctor is concerned, I'm the rarest of all unlucky ducks. ( Don't I feel special!!!!! I get to experience intense pain and she gets to read about it )
I know what you are saying about this stupid disease affecting a persons personality. I used to be everybodys favorite person, but in the last year, I've gotten so many of these really painful attacks, ( I' m going through one right now ) that I tend to keep myself withdrawn from others because I don't want to burden anyone with my problems.
I thank god that at least you care enough to understand my problems and dilemas.
You are so right!!!!! U.S. medicine is so far behind chinas medicine, not only are they doing fantastic things with stem cell research, but there is practically no obesity in china, and chinese students are so far above american students.
Jayme, if you check out the 'prevention' part of this article, it states that the med acetazolamide is a med used for this, they also recommend a certain diet to limit attacks.
When I was at school age I couldn't do any sports. Neither didn't I like to walk. All this formed a big stigma on me because no one understood what was it about. And I myself didn't understund what it was about. My cmt was diagnosed twenty years later.
Honks said:
I miss a life without stigma. The societal mechanic serves a purpose, or at least it did at one point, but it is hard for those who have things to offer and who haven't given up. I love people, and I love to be around them, but sometimes the joy diminishes with all the discrimination toward my condition. There have been fascinating studies done on the subject and, for someone like me, it really takes perspective in order to accept their given behaviors and tendencies, but in the end I understand that I belong to this race just as much as the next guy.
You have all waited such a long time for a diagnosis, it's difficult to grasp such a long wait. Even 7 years seemed like an eternity to me. But once the diagnosis happened, there were many options for treatment, and I wish you all had those options.
With the genetic research, we must stay ever hopeful that something fantastic for you all is around the corner. Lets hope that new combo med is the ticket!