"Vacation Time"

I took a week off of work! It is the first time I've taken any "real" time off of work since being off for all those months in 2007/08 when I was first diagnosed. I had planned on taking Mik out of school for a couple of days and just going somewhere ....anywhere. But, I had totally not thought about her having benchmark testing at school. It was okay, though. I was so tired all the time, and I really did need to be able to have some time to just rest. Ha Ha. I'm not sure that I actually had that rest time! I had a week of NO doctor's appointments! Can't remember the last time that happened. The carpets got cleaned :) yeah, no more doggy smell! Terminix again says we are termite free for another year. The yard didn't get done, but the guy that is suppose to do it says w/in the next 3 weeks I'll drive home and see a beautiful yard. And, last but def not least....my windows are clean...on the outside. Thank you Tammy. Don't know how much she enjoyed cleaning my windows, but I enjoyed spending time visiting with her. Of course, Mik and I did spend quite a bit of time together....and we spent too much time at Walmart. I need to go back to work just to stop spending money!


As for a myositis update...well, there really isn't much to say. We've made a request from the makers of Rituxin to provide the drug free of charge since my insurance has refused to pay for it and has denied the appeals.
I did get a new PCP. Very nice lady...I really liked her...esp when she wanted to prescribe something she said that she needed to call my Rheumy first to make sure it was okay. :) She did a bunch of lab work and then I got a call saying I was anemic and my B12 was low, so now I'm on iron pills daily and B12 injections daily.
My swallowing studies came back...guess what...my muscles are weak. Duh! Did we have to do the studies to come to that determination? I believe that is what I said when I went in for the appointment. Anyway, the doctor prescribed Reglan....4 times a day. I've not read good things about this drug...so, I have not started it yet. I want to wait until I can talk to my other two doctors that have been with me since the beginning of this journey, and that I trust. I have appointments with both this week.

And, that would be it for now...

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...

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.

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)

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.