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 Changes

Yesterday was my last day at a job I've had for the last 9.5 years. It was an "interesting" day. The place has changed so much. It isn't the same place anymore. It was rather sad thinking back over the years and seeing how far the company came and then watching it's fall these last few months. I hope that they can pull through with the new owners.

So much in life has changed over the last year. It's amazing...work, home, children, health. So many losses.

When Life Revolves around numbers

It feels like my life revolves around the numbers that come back on my labs. Labs tell me how much medication that I'm going to have to take for the next week. Then, labs again. Then, adjust meds. and the cycle continues.

I'm accepting, starting to accept, that this will just be life for now on...life with Polymyositis.

Accepting it. Not liking it. In fact hating it more and more each day.

Polymyositis

Never heard of it until it changed my life.

An autoimmune disorder that left me...well, dependent on others.

It's hard to believe that I'm in the 9th month of having been diagnosed. I know that I've come a long way. I can walk again, albeit with a cane or walker, only for short distances, and my gait is not normal. I can lift my arms over my head now, just can't hold them there. I can dress myself, cook meals, etc...it all takes me a lot longer than it use to take me and I've had to learn ways to compensate for things I can't do (such as sitting down to pull slacks on b/c I can't lift my legs)

Still can't get up myself when I fall. Still can't do stairs well. But, at least I can stand up from my own couch now. Still can't lift things that are too heavy (i.e. a gallon of milk).

I should be thrilled at the progress. And, I am. I know that I've come a really long way in the last 9 months. But, it still bothers me to hear people say how well I'm doing or how well I look, etc. I am well compared to 9 months ago. I am not well compared to 10 months ago...or a year ago...or any other amount of time.

My doctor told me that she really didn't think I'd ever walk again...that the damage was too much. So, in that respect I should be thrilled that I can walk, even with a walker or a cane, for short distances.

But, I want so much more back.

This polymyositis has changed so much. My physical limitations are just part of it. The medications have changed my appearance and have caused mood swings (depression and anger both). I am clumsy now. I am more forgetful, or so it seems to me. Easily irritated. Fatigued all the time. So many things that just are not me, but now they are.

I don't like anything about the person I've become b/c of this diagnosis.

And, I can't say this to anyone b/c ...well, b/c I *should* be thankful b/c I'm doing so well and much better than anyone ever thought I'd be doing.