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!

Another unknown world

It appears, to me, that when you have an autoimmune disorder you are at risk of developing other autoimmune disorders and, of course, other illnesses. Side-effects of medications that are suppose to be helping you cause even more problems. It is a never ending cycle.

I have cushings syndrome due to the side-effects of the steroids.
My vision has been affected...not badly, but I get to wear glasses to read/etc.
My hair falls out by the hand-fulls. I'm assuming this is b/c of the imuran or the methotrexate. Luckily, I have very think hair.
Raynaud's syndrome...not sure what's caused that...steroid use maybe?
Steroids have def caused weight gain. 50lbs total so far. It really is miserable to be overweight. I need to lose at least 35 to be at an "ideal" weight, according to me doctor. But how do you do that when you can barely walk or lift things. Just taking a shower feels like a workout.

Well, the pain has been so much worse. My doctor thinks I may have yet another illness. Of course, my risk for this was higher due to the use of steroids. Avascular Necrosis. I don't know much about it yet...only that it causes severe pain and causes the "bone to die"? It isn't official yet. I've had xrays. Next are MRIs. Then...well, I don't know. Just another leap into this unknown world.

Another Thanksgiving Thought

Emotionally/Mood I feel more like ME than I have in...well, probably since being diagnosed with PM. It has been very eye opening to see how the very drugs that are to help you with your physical health can cause so much emotional harm. Nevertheless, I'm feeling better...like me again (emotionally). Now, if we could only get this body to work right again. I am starting to accept the idea that I'm never going to run again and do many of the things I use to do...but, there are some things that just need to change. This medication has caused sooo much weight gain and I really need to drop the weight...it's more than a physical/how I look thing...it's also just not healthy to be overweight like this.

Every year on Thanksgiving it has been our tradition to make a big pot of Chili and spend the day putting up Christmas decorations. Well, since it's just me and my daughter this year, we won't be doing that (I can't physically put up the decorations, or get them out of the attic). It is a bit sad, a tradition lost kind of thing. Another thing lost to the polymyositis. Of course, she's hitting her teenage years and making a new tradition of sleeping all day. ha.

Everyone enjoy your day...Happy Thanksgiving!

Thanksgiving 2010

Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving.

CellCept

Wow, so it's been a long time.

The last few weeks have been pretty hard. I'm still having to take IVIg each month for the Polymyositis. None of the oral medications have been enough to keep things under control. Even with the IVIg, my CPK numbers have been a bit above normal, though nothing like when first diagnosed. Anyway, my doctor had me start on CellCept. I read alot about it before hand. Even amongst the side effects that sounded terrible, there seemed to be lots of people that have responded really well to the CellCept. And, it was my last option. So, I started it, but it caused some depression...so, she took me off of it for a couple of weeks to see if things with the depression leveled out. It did, but I wanted to try it again, so she agreed. Next time, maybe I should listen to the doctor. I spiraled down very quickly into a severe depression. I'm off of the CellCept for good now. What the future holds, I don't know.

Even with the CellCept gone now, the depression has not lifted...well, may be a little, but definitely not enough. I'm living in this dark, miserable world that I wish to leave...I'm so very tired of trying this or that medication...and tired of waking up in the morning and hoping that I'll be able to get out of it without trouble...or that I'll make it through the entire work day...and then coming home and barely getting dinner fixed when all I really want to do is park it on the couch or bed and sleep...and stop hurting (physically and emotionally)

Life with Polymyositis

Each day that I wake up I wonder what the day will bring. Will I walk a bit better, or will I even be able to lift my leg up? The side-effects of the medications are almost as bad as the disease itself. Interesting...I have a disease characterized by muscle weakness and one of the medications that I have to take to treat it can cause side effects of .....muscle weakness. Go figure. The side effects are numerous...weight gain, hair loss, acne, blurred vision, insomnia, mood swings, etc.

Since being diagnosed with Polymyositis I've been diagnosed with several other things...effects of the disease or the medications: high blood pressure, migraines, neuropathy in my hands and feet...and several other things.