CMT Part VI

I am returning to this CMT theme over and over it seems. I guess it is the result of finally have to fight something I have chosen to ignore for so many years. It has advanced to the point where it demands my attention several times a day.

I have osteoarthritis that may our may not be related to my CMT. The Rheumatologist I go to has assured me it has nothing to do with CMT, but with all I’ve read lately I suspect the two diseases are actually playing to one another. Recently I noticed my left middle finger has developed a fast changing bend in its tip joint similar to what happened to my right middle finger a couple years ago. And the swelling and pain have been incredibly difficult to deal with. It is truly frightening to contemplate losing the use of your fingers and hands.

So I’m fighting back. Despite my lack of desire to travel or go to new places, particularly inner-city areas known for their crime, I have requested and obtained an appointment in Baltimore in May at John’s Hopkins medical center.

Now I’m gathering records and writing down questions, and the lady scheduling the appointment said she was mailing me a bunch of paperwork to fill out, along with a CMT research survey/questionnaire I can work on. But in seeing the darkness of this fight beginning to consume me, I decided to figure out how to make it a positive thing. And part of that means involving my family.

The national aquarium is close to John’s Hopkins. So it seems like a good opportunity to let the kids do something fun while I’m tending to the CMT fight. Positive. Mind over matter. If I don’t mind it don’t matter! Ha!

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It’s not going to win. The disease that is. I will win. It might make me miserable at times, and take away some of my freedom’s and abilities, but I will win. I’ve let it play it’s silly games all these years as long as it didn’t get too personal. But taking my hands, and my mobility, that’s personal. It’s ticked me off. So fight I will.

I’m filling out forms, making a list of questions, and learning what I can about CMT. Hopefully the next generation will enjoy the cure that is so close for CMT. As for me I plan to take CMT’s troubles head on, and turn them against the disease itself. It’s like holding up a mirror up to a laser.

In any event that’s my note for the day. Hopefully my next blog entry will be something much more fun and interesting. But for today this is my life, and that is certainly interesting to me.