Marilyn and Liz

[Guest guest]

In a message dated 08/04/2002 2:34:26 PM Central Daylight Time, Rpolychondritis writes:

Good morning,

Well, the cats got me up later than they usually do. It was

4AM this time. I can live with that, especially since I was

in bed and asleep by 8 PM last night.

You should be really proud of yourself for getting

down to 4 mg of pred. That's great. Does your doctor want you

completely off of it? I am stuck at 3 mg. My doctor wanted me off

of it, but when I saw him a month ago he said to just forget about

trying to lower it anymore. It's a crutch for me. I am scared that

if I come down any lower I will start to flare.

I get weepy about once a week. Not sure why, but have wondered if it

has something to do with the metho.

We are entitled to have weepy, down days. When I get those days I

just try and take better care of myself. Please,

keep talking about it, it's important to get those feelings out.

Crying is a good release of all those emotions.

Marilyn,

I could have taken care of your cat because I didn't go to bed until 5:30 a.m. I am having a LOT of trouble going to sleep at night, but could take naps during the day if I would allow myself to do that. I keep thinking if I don't sleep during the day, perhaps I can sleep at night. Not! This has all changed since I lowered the Pred to 4 mg. I am glad (wouldn't say "proud") that I'm down to 4 mg. It hasn't been easy, and that's the lowest I've ever gotten without flaring. Yes, my doctor wants me to get off of it, but says anything under 5 mgs. isn't bad. I have put on so much weight since being on Pred (5 years) and I saw L. a couple of months ago and she has lost a lot of weight since she has totally gotten off Pred. Don Main has lost a ton of weight since he got off Pred. also. Plus, I've put on 30 pounds since I've had to take insulin!! This, alone, is depressing.

I had a sleep study done while I was in Seattle, but was not able to stay long enough to get the results. I received them a couple of weeks ago and this is what they said: There was an increased amount of dream sleep in my study. There was snoring present 30% of the night and I had mild sleep apnea and stopped breathing 9 times per hour of sleep overall and during dream sleep 24 times per hour. I dropped my oxygen to a low level of 87% and I moved my legs a lot, or about 26 times an hour, and these are causing disruption of my sleep. I showed a remarkably low level of REM sleep (whatever that is.) They strongly recommended that I follow up with a physician in OK to have this problem further identified and treated.

Now, all of this sounds very interesting, but I don't really understand a darn bit of it nor do I know what should be done. SO, I have an appointment Aug. 13th with a sleep doctor here in OK and will give him the results of the test to see what he has to say about of of this.

Liz, I addressed this post to you because of the sleep study information because you seem to know a lot about everything.

Marilyn, as always, thanks for you kind words of encouragement. I do appreciate you.

Love,