GAYLE - SLEEP & PAIN

[Guest guest]

Hi Gayle.....

Oh my gosh girl.... You are not getting enough sleep to keep a bird

alive. I do hope your doctor starts you on something to get you in that

bed at night for some good long deep sleep. I can tell you that when I

don't sleep well I'm in pain and my mood is horrible. I can't stand

myself!

When I first got this disease my doctor told me to get at least 10 hrs

of sleep at night and a 1 to 2 hr naps during the day. So you see,

you're way off the mark....

It's no wonder you feel so darn horrible.

Has your doctor every given you a sample of Vioxx or Celebrex... you

didn't say if you had already taken it and it didn't work or you just

can't take it because of some reaction?

I have yet to talk to anyone that has just this disease without anything

else running with it. Seems many of us have Osteoarthritis. But, if

they are thinking that Myositis isn't painful to some patients than they

need to think again. There are many of us that do have a great deal of

pain and some do not.

Gayle, I have to say the good Lord WAS watching over you when you went

off your Prednisone. I don't know how you did it and not get really

sick. I couldn't fast even if I wanted to. My body dictates what I

should eat... Like I want Tuna Fish really bad right about now. LOL

You mentioned the feeling of " deep sense of loss " .... I know that

feeling! I've been there also. I had to leave a great job after 18.5

yrs and it broke my heart. It took me a long time to feel like I could

do anything worth while. I was no longer fast at anything, I was unable

to stoop down much less get back up, I was always so tired that a visit

with my friends became an ordeal, and the lack of communication with

people and doing something I felt was important.... depressed me to no

end.

I REALLY thought I could beat this because I usually would win at most

things that I set my mind to. I soon learned, after many, many tears,

that I couldn't beat this... it was going to take time. Something I now

had plenty of.

Prayer is not only very good to keep your mind off what it is you can't

do at the moment, but it also lets our Father know that he's loved and

very much needed. The power of prayer will help you get through this.

Today my lungs have been bothering me the most. I worry that by not

taking the drugs any longer it just might cause the lung disease to

progress once again. Heck, that won't be good at all! .... I don't like

huffing and puffing up and down the hill to feed my girls. I intend to

ask my lung doctor on the 1st when I get my flu shot.

Gentle hugs,

Vicki