Swallowing difficulties

Another problem without Polymyositis could be swallowing difficulties.

I've been having problems with this for awhile now, and it seems to be getting a bit worse. So, this morning I'm off to see yet another MD about this, at the recommendation of my Rheumy. Truthfully, I'm not sure the point. I mean, we know its a muscle problem...I see no point in doing a bunch of tests/etc just to be told what we already know.

But, off I go anyway...

Rituxan denied again

So, I had a long chat with my doctor this week. Insurance denied, again, for me to have Rituxan. My prednisone is back up, still on Methotrexate and Imuran...and, of course, IVIg each month. Despite it all, my CPK levels are still too high. They are not extremely high, as they have been in the past...but, physically, I weaker, tired all the time, etc. But, there are so many factors to take into account. Not only is the CPK high, but I've been on prednisone so long that my doctor thinks that may also be contributing to the muscle weakness. Also, the avascular necrosis...while the x-rays don't show it, this is also something my doctor thinks I may be dealing with. She wants to do an MRI as soon as I tell her to go ahead and do it. For now, though, if I'm taking all of the pain medications on schedule and not walking much, the pain is tolerable...so, I'm not going to bother with an MRI until it's no longer tolerable and we need to do something different.

We did talk about not working. Essentially going on disability. It is rather tempting, but my job...it's more than a job to me, always has been. It's my career...It's who I am. I've already had to give up so much of who I am and what I do due to this disease, that I'm not sure I'm ready to give up my job. I'm so lucky to work someplace that has worked with me to make sure I have everything I need to do my job and to take care of me (ie medical appointments). I'm torn, though....and, I don't know how we'd survive on an income of disability. Besides, I think you have to wait like two years to get health coverage (medicare) once you've been determined disabled. So, what do you do in those two years?

So many things to think about and consider...

2 in 7 Million

Because of where I work, I have access to some of the latest medical journals/etc. So, recently I started looking through them and reading various things about Polymyositis and some of the most recent research. I read in one of the articles that there are 2 cases in every 7 million (approximately) people diagnosed with Polymyositis.

I guess I didn't realize how "rare" polymyositis is. I mean, I've read online of other's stories...and there does seem to be plenty of us out there.

A few days ago I had to have a biopsy done b/c during one of the "routine" cancer screens I now have to do annually came back abnormal. The doctor, trying to be reassuring, said not to worry, "it's not common for women your age to develop this type of cancer."

I wanted to yell at him...don't tell me what's "common" and not common for me...I mean, if "common" meant anything, I wouldn't be living with Polymyositis now!