Tuesday, December 07, 2004

Sleeping, foods

I'm having sleeping problems again. I don't know what causes them. Since there's a lot of "I don't knows" when I ask my dr. anything, I probably won't ask him. He's a good dr. but he really lacks bedside manner. Some appointments he's very low key, quiet, and kind of mean (seems to be). Others, he surprises me by having a decent personality. I'm not the best patient but I'm not obnoxious or anything either. If anything, I'm too quiet (or so I think) and am always anxiously waiting for the end of the appointment so I can get out of there before he thinks of something scary to put me through. Yep, seriously paranoid.

"I don't know."

Hate that answer.

I've asked if Purinethol caused leg swelling. He didn't know. I searched (google mainly), and didn't find any info about that. Just my left leg/foot is a bit, swollen. Not all the time. Maybe it's high blood pressure. Who knows. The primary dr. (pa-c actually) is on me about that. Too many dr's.

So, sleeping problems. Never did find any info linking 6mp with insomnia. Maybe it's a combination of things. Lack of sleep isn't a new problem. I have trouble unwinding and silencing the incessant thoughts and worries that plague me at bedtime.

Guess I can't blame cd/uc for everything. But some nights it is to blame. And for surprising reasons. Like the time I changed garlic supplements. I was taking the soft-gels but ran out and found a less expensive brand that happened to be a powdered capsule. I took one around dinner time. And around 2am I was up (not willingly) and in pain. For a while.

The real problem is, I can't say for absolute certainty that this new form of garlic caused the problem. It's like this with most of the "problems." How can I ever really know for sure? When I'm experiencing a flare, anything can cause or add to an ongoing problem. Even water. But that night, other than the new kind of garlic supplement, I don't recall doing anything differently. And since then, haven't been brave enough to try it again, just in case it was the cause of that night's pain.

Sometimes the cause is more obvious.

Spicy foods - Sometimes.

KFC - Always! Don't know why, but anything from KFC causes major pains and problems, which is unfortunate; they have yummy chicken. Even the so-called "healthier" entree's cause problems.

Milk, milk products - Sometimes. And not all milk products all the time. I can handle hard cheese (like cheddar) usually. But something soft like feta can sometimes cause a problem. Cream cheese is ok and ice cream too - Sometimes!

Corn (on the cob, canned) - Always!
However Popcorn - Sometimes!

All the guess work. When this all first happened (way back in 96') it was like chemistry hell. I can have ___ but if I have ____ I'm going to suffer. Peanut butter and bananas are binding, but orange juice will get me running. And back then, the dr. wasn't much help he said, "just try it, if it causes a problem, don't have any more."

Easy for him to say, he wasn't the one in agony.

What helped was an online support group. Talking to other people who had already gone through this, well, was just very comforting. It was also terrifying hearing about those worse off than I was.

    This bitchy girl I used to work with (when I first learned I had cd/uc) made a point of telling me all the scariest stories she could make up to freak me out about what could happen to me.
Like I needed that. I'm paranoid enough. Long since moved on from that job but I remember that about her (and little else about her). Guess some people use whatever they can (in this case, my newly diagnosed ailment) to make themselves feel better.

So... "try anything!" Nope. That's risky (though necessary if you want to have any variety at all). I pretty much tried to follow what the support group's suggestions, although I can't remember the exact wording. Basically, no seeds, no skins, nothing processed, nothing raw. Not sure if the "nothing raw" is my own addition, included after an excruciating experience involving a salad, and remembering the drs. advise to "just try it."

I try to keep the "no seeds, no skins, nothing raw" in mind. There are some exceptions.

But that's enough for now.


Blogger damppuppy said...

If you're having pains at night from an active flare, you're probably waking from the pain. I remember I couldn't go to sleep for various reasons. One time it's school. Another time it's from a flare. Another time it's from a high dose of prednisone. I'm now off the school, off the flare, and on a lower dose of pred. My only problem now is an ambien dependency. If you have to take ambien take as small a dose a possible and intermittently. Meds like ambien can cause rebound insomnia and may leave you worse off than before.

12:20 AM  

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