2010 Review

Well, its' been three years. Actually Jan. 1st will be three years to the day that I came home from the hospital. Sometimes I get frustrated with the limitations I have, but if I sit and think about the progress...there really has been, esp in the last few months. My CPKs were normal for two months (Sept and October). November was a little high, but not too bad really. Lab was drawn this morning, so I'm hoping that will return to show it as normal too.

I ran the vacuum for the first time in three years. I had not had the strength to push it. But, I was able to do so about 2 months ago. you know, I really don't like to vacuum. ha.

I've been able to walk more. A little longer over time. I still get tired, though. It still boggles my mind how I can walk from the bedroom to the living room and feel like I just ran a marathon! Hopefully it will continue to get better.

I still hate the weight gain that came with all the medications! I sure wish I could get rid of some of the excess weight.

Overall, I guess it's been a good year as for Polymyositis, even with the setbacks here and there.

EMG results

I had an EMG today. I didn't think it was necessary, but the new neurologist wanted it done. She is questioning my diagnosis. Doesn't matter, evidently, that I had a biopsy done and it confirmed my diagnosis. I also questioned the need of an EMG b/c I'm on all the medications which has decreased the inflammation, etc. So, there wouldn't be evidence of inflammation. But...I spent an hour being poked with needles and being shocked.

The EMG showed evidence of myopathy. Myopathy is characteristic of Polymyositis. Of course, new neurologist doesn't want me to have PM, so she goes on to say that she thinks it is Steroid myopathy. Sure, that is possible. That doesn't mean I don't have PM. So, she says she wants me to have another biopsy done. I think I have to draw the line a surgery. There is no need for it. I know what my diagnosis is...I'm responding to treatment. Yes, I know I need to get off of the Prednisone and my doctor has been working on that.

I returning to Dr. Lowery. I like having a doctor who listens to me and believes what I say about my symptoms.

Distal muscles

Polymyositis affects your proximal muscles (those closer to your trunk, hips, shoulders, etc). That's been typical for me as well. Though when at my worse I did have some weakness in my hands...I couldn't open things, my handwriting became bad, etc. But, that improved over time as well. Lately, though, I've been having pain in my hands and fingers. By lately I mean several months, but it seems to be getting worse...or it feels worse to me. Making typing harder to do...I keep having to correct things...and, it simply hurts.

I'm kinda tired of the pain. I don't like taking pain medication all the time, yet I don't particularly like being in pain either. If I thought the pain meds were a temporary thing it would be one thing...but this is obviously not a temporary condition.

Prednisone side effects

I think I've experienced all the side effects of this hellish drug. I have the moon-face, the horrific weight gain, high blood pressure, problems with blood sugar, acne, etc.

But, the food cravings. Okay. Now, if I'm going to be hungry all the time, why can't I crave food that is actually even semi good for you? All I want is sugar-filled food or carbs! I can't eat much at one time, but then I want it all the time! all. the. time.

Even when I'm feeling nauseous, my brain is wondering where the next brownie is coming from.

All that and it doesn't even work all that great for me.

...ologist

Rheumatologist
Pulmonologist
Cardiologist
Neurologist
Immunologist
pain person...what are they called?


Have I left any out? Might as well add them to the list now while I'm adding, right? blah.

Neurologist on board

I haven't seen a neurologist since I was diagnosed. This new doctor (wonder when she'll become just "my doctor"...Dr. Lowery is still holding that status in my head)...anyway, this new doctor has referred me to a neurologist. Interestingly, it took her a month to get the referral made (she's definitely on the slow side), but once she made it, they got me an appointment within the week! What's interesting about that...usually it's a good several months to get an appointment in that clinic. So, Monday morning I see a new neurologist...not the one that initially saw me and thought I might have PM.

I'm not sure the point of seeing this neurologist. What are they going to do that's any different from what I'm doing? There's nothing different treatment-wise we can do.

But, I'm going to the appointment monday. Like a good, compliant patient. Wouldn't want to deprive **** of making any more money off of me. (okay, so I'm still a little bitter about being forced to change doctors.)

Feeling lost

Yesterday I finished my November IVIg treatment. This was my first treatment with my new doctor. The infusion clinic staff were super nice.

But, I just want to return to Dr. Lowery.

Thing is, when I was with Dr. Lowery, I knew exactly where I stood as far as my health...CPK levels, etc.

This new doctor, she didn't even order lab work. I have no idea what my labs look like. Have no idea how high my CPK levels climbed to before I had my IVIg this month...so, how am I suppose to know if I can decrease the steroids this month or not?

She really hasn't a clue how to treat ME.

I need to figure out how I can return to Dr. Lowery.

In the meantime, I'm about out of pain medications. The pharmacist has faxed the refill request to the doctor twice in the last week and the doctor hasn't replied. I've called the office twice and am told to have the pharmacy fax in the request. So, yeah. Things can never be simple, can they.

I'm sick of all this.

and, I'm already sick of holiday stuff.