You look so Good!

"You look so Good!" "You are doing so well" "You must be doing so much better, you look great!"

First...thank you prednisone, but I'm over 50 lbs heavier than what I use to be. I need to lose at least 30 of it to be in a "normal range"...my hair falls out, my nails are brittle, I get bruises if you look at me wrong and my face keeps breaking out...I know I don't look great! But, yeah, I know that's all physical.

What you don't know is how hard I work to not LOOK like I FEEL all the time. I feel like hell. I'm tired. I'm in pain. I'm nauseous quite a bit. I can't lift a gallon of milk to put it into the fridge. I can't lift the jug of Tide (or whatever I use) to wash clothes. I have trouble getting out of bed by myself on some mornings. Getting dressed in the morning exhausts me before I ever leave the house.

BUT...I LOOK GREAT! So, I must be doing better. Right?

Good days just lead to bad days

Last weekend was a nice weekend. I was feeling pretty good. I woke up not feeling tired...first time in a long time I actually felt rested. I cleaned house and went to the grocery store. I most all afternoon and put a few meals in the freezer. That was Saturday. Sunday was church and hanging out with Mik. Monday through Wed. was work. I got home late two nights (later than usual, but not really late). I had today off (holiday)...and woke up tired and hurting. I ran some morning errands but was home by 11:30, put dinner on the stove to cook for the afternoon and then crashed on the couch. Tired and hurting. My hips feel like my bones are grinding together. My back muscles are painful and in knots.

IVIg is scheduled for Thurs and Friday of next week. I hope it can get this back to a bearable level.

Normal ends again

This new doctor calls me yesterday to let me know that my CPK has gone back up.

So, I'm no longer in the normal range. But, she's not sounding overly worried about it. It's not that much over the high end of normal. However, I expected it to be high as I've been feeling some slight increased weakness here and there.

They also have yet to call the insurance to get my IVIg approved. I explained to her, again, that I need to have it 11/18-19 to remain on schedule. I don't think this doctor seems to understand that by missing a treatment my CPK starts rising fairly quickly and my weakness increases quickly. I can't miss a treatment. Why would she understand that, though, she's not treated severe PM before...she has no experience. (grr. insurance)

new doctors, starting over

Since I work at the same facility that my new doctor works, I was able to pull strings to be seen sooner. So, tomorrow I see my new doctor for the first time.

I'm trying to think of the positive things about this. Here is one...the new doctor is just down the hall and down one floor from my office. So, I won't have to be gone from work much to see the doctor.

She's never treated polymyositis.

I still want Dr. Lowery back. Her office called me with results from my labs, following my IVIg. My CPK levels were a bit higher than last month, but still in the normal ranges. That's two months in a row! So, I get to decrease my Prednisone again :) yeah! And, Dr. Lowery said I can always come back to her if we get insurance worked out.

2 months, normal CPK

2 months in a row of normal CPK levels. Yeah. The CPK this month was higher than last month...but right at the level to be considered normal. So, this is a good thing. I can try to increase PT exercises without causing more muscle damage.

Of course, CPK levels are only part of Polymyositis...but, it's taken three years to get it in the normal range. so, yeah!

I've been really fatigued. Dr. Lowery thinks that is probably due to decreasing the prednisone...just my body adjusting to the change. She said we could go slower on the taper. No way! I want off of that stuff so very much!

Got the official word from my insurance company. I won the appeal, partly. They are going to go back and pay Dr. Lowery through November of this year. But, after that, I have to find a different doctor. So, Dr. Lowery looked at the list they provided me. There were 6 names. One of them doesn't practice anymore. one of them is a pediatric rheumy. The others are at the facility where I work...there is a 4-6 month wait to get an appointment. She's going to try to get me in under an emergency basis. I can't go without treatment a month, much less 4-6 months. I really, really do not want to change doctors. Anyone want to donate the $5000 for out of pocket expenses so that I can stay with Dr. Lowery?

My strength does seem to be getting some better. That's a good thing. No where near where it was, and I think that there is some damage that won't be able to be reversed, but there's improvement none the less.

Some Improvement!

Thursday and Friday I had my IVIg treatment for the month. Thursday I saw Dr. Lowery and she did the tests she does to see if my strength has improved any...truthfully, I think I could just tell her and it would be more accurate, but whatever lol...anyway, she said according to her little tests, it was better than last month. I'd say that was in line with my own experience. I've been walking a bit more...even able to push the vacuum myself. I was able to lift my arms over my head, though I couldn't hold them there for any length of time.

The bad news...because of insurance I might be forced to find a new doctor at the first of the year. I'm pretty upset by that. I think there is a lot to be said in having a good working relationship with your doctor...and I love working with Dr. Lowery. She is wonderful. And, for me to say that about a doctor means a lot as I'm generally very critical of doctors. She knows my disease...she knows what works, what doesn't...she's been with me from the beginning of this fight. I do not want to go to some other doctor who doesn't know anything about polymyositis (even if they think they do). I shouldn't be forced to go to doctors at the facility where I work (they're the only doctors covered by my insurance). I just want MY doctor, Dr. Lisa Lowery.

Bobblehead dolls

Bobblehead dolls...know what I'm talking about? Those dolls that have the heads that bobble back and forth. That's what I feel like today. A bit of neck muscle weakness I suppose. I was talking to someone yesterday and in the middle of the conversation I was gasping for air...it was weird. But, I guess that is, again, some lung weakness.

My CPK levels, after my last IVIg, were lower...closer to normal, but not close enough to get Dr. Lowery to decrease the Prednisone. that evil drug. ha. Given how the weakness is in my neck today, I'm assuming that my CPK will be a bit higher when I go back for IVIg (1 1/2 weeks now). But, I haven't fallen and I'm still walking around the house and some at work...just not really far distances. Since it's starting to get a bit cooler outside I thought I'd see about using the walker and try walking down the street a little and increase that a bit at a time...just see what I can tolerate. I suppose, though, that some of that will depend on CPK levels.