Being 27 and having a chronic illness does not come with a How To Book


This is my first blog here on the site and actually my first day. Charcot Marie Tooth sucks. I have CMT1a. And aside from running slower than the other kids in grade school and broken bones I never really noticed it.

I believe about 7 years ago something changed all that. I am registered with the Charcot Marie Tooth Association. Who sent me a list of drugs, medications I might be at risk while taking. Because of the CMT. This is when you trust your doctor to know. But I was put on a drug that nor I or my doctor knew could harm me. And it did. Amnitriptilin no clue how to spell it. Is in the category of...."maybe" I was on the medication for a year. Then I started noticing that my symptoms where all over the place. And I had no idea what was going on. It was not until last year I even looked at the medication list and realized I had been on a few of them. None of it was proven. Maybe my illness just got worse. Either way I am here living with it.

I just got my first pair of blue rocker braces and I hate them, I have a cane I hate that, and a wheel chair in the back of my van that my butt will never sit in. Its going right back to MDA! But the braces for my legs help. And I can not believe I have them.

I live in Michigan and I do not have medical care through the county I live in or the state. The cost of the braces where $889.00 each. Plus $400.00 for custom inserts. I do not work. My husband and I simply do not have that kind of money so I got to thinking. I will call the company that makes the brace and tell them my situation and see what they say. I ended up only having to pay $150.00 Because I dont have medical and I am on 6 meds you have to get a little crafty as to how you are going to pay for them. Walmart has a nice program. Also I go to an income based pharmacy but one I get from the drug company.

However, this month I need refills and the cost to go to see this doc is around 90 bucks. Keep taking your meds they say no matter what keep taking them. Well then let me see the doc for free.

It seems like its a never ending fight. And I am tired. All I can do is write about it and start my radio show back up. Create healthy outlets for my frustration. But Damn is it hard.

If you are reading this I will be I hope starting my CMT radio show next week maybe even a quick show this weekend. Watch for CMT facebook groups for postings. Together we can tell the world we are here and we want a cure. And we want to be heard.

Thanks for reading I will post a blog tomorrow with the link to the show.