Disheartening

[feuervogel]

So, yesterday at the beach I woke up sick again, after having rice, bananas, and several bites of cantaloupe, and two different kinds of ginger ale.

Once I got my appetite back, I had more rice crackers, then I ate the gratin we made last week for dinner (a very small piece).

Today I woke up fine, except I didn't really have an appetite. Then I ate some more rice crackers (good thing I like them) and have been drinking water and doing laundry. (I also typed up my notes into a spreadsheet so the doctor won't have to deal with my handwriting next week. I should also type up as much of a history of this thing as I can remember, including the night I went to Sage with A and ended up getting my food to go. Which was back in April I think.)

I'm getting hungry, but I don't know what I can/should eat. There's plenty of food in the house; I have no idea what's going to make me sick tomorrow, or even if it's related to food AT ALL. The blood panels should come back sometime this week, hopefully sooner than later. (I asked my friend K, who works at LabCorp, and he said the test takes a day to run, but they wait until they get enough samples to run a kit, which is why it takes 4-5 days to get the test done.)

It's disheartening, because I have days like Saturday and today, where I'm fine, and I don't feel sick, and I can go about my normal business, then there's Thursday, Friday, and Sunday, where I'm awful in the morning and fine in the afternoon. There's a pilates class I want to take at the yoga studio up the street. It's at 9 am Tues/Thurs, or 10:30 Fri. Today I could make it, but I have no idea about tomorrow.

There's a huge anxiety component with this thing.

I'm also getting irritated with expressions of sympathy that compare it to some self-limiting illness they had this one time. My instincts (all pessimistic, naturally) are telling me this is going to be a PERMANENT issue now, and I'm going to have to make a lot of changes. [The friend who had cancer and talked about how radiation and chemo gave her horrible n/v/d? I think she understands.] Yes, I'm glad you're expressing sympathy. Comparing this whatever that's been going on for two months now to the time you got the stomach "flu" and felt bad for a week? Or had food poisoning? Kind of misses the point.

This is like food poisoning or viral gastroenteritis (influenza viruses do not infect the GI tract; yes, I'm an infectious disease nerd) that hits repeatedly, and almost daily, gives the slimmest hope by the end of the day that tomorrow will be normal again, then cruelly shreds that hope.

Comments

[feuervogel]

Thank you!

I'm usually pretty good at picking out patterns, and I'm not finding one here. Which is annoying, but it may point away from food being an issue. I wish I could get in to see the GI sooner than later, but I'll settle for the test results.

From what I've read, food intolerances have symptoms worse at night, and this is always in the morning. It's no wonder the doctors are confused.

[leora.livejournal.com]

Patterns can be so difficult. It took me about a decade and a half to find my first clearly identified migraine trigger. Part of that was because I ruled out a whole bunch of common triggers that don't seem to be mine, like you do.

Are you keeping track of things beyond food, like how much sleep you got and how much you exerted yourself? I'm not sure what else might have an effect... but basically anything you can think of. You know a whole lot more about what might be medically relevant to your case than I do.

Clearly you don't have any easy pattern to find, or you'd have found it already. But there's always the hope with more data you'll work something out. Hopefully without it taking horribly long amounts of time.

I don't want you stuck with this for a long time, but what I can say is that for the horrible things that I have been stuck with on an ongoing basis, I do tend to learn little things over time about what effects it. I haven't learned enough to fix my problems (although I have greatly reduced my migraine frequency and could reduce it more if I went back on the pill), but I have learned things. And I think you're likely to too. It's hard for some piece of the puzzle to not make itself known if you just keep getting data. Even if it's just something that plays a partial role so you can reduce the frequency of problems while other unknown factors keep confusing you.

When I was in high school, I had a bad migraine about twice a week, and each one lasted a bit over a day. I never went to school for a full five day week. Now I'm down to about one a month. That's the very slow accumulation of data and changes in my lifestyle to avoid my triggers showing itself.

I wouldn't want that path for you, because it was horribly slow. And I certainly spent a while looking in the wrong places for my triggers. But even if this is a hard to solve problem and one you are stuck with for a very long time, enough data will sometimes show you a pattern, sometimes even after you've stopped looking for one. You're also much more medically aware than I was and much more likely to be alert for a pattern, so if it can be found, I think you'll find it a lot faster than I found mine. (Although I did have the disadvantage of being very, very young at first, so I wasn't really expected to be the best problem-solver.)

[feuervogel]

I haven't been tracking sleep fastidiously, but that doesn't seem to make much difference, nor does exertion (though my arms and legs are tired/sore from yoga last night.)

I was fine yesterday and so far today; here's to hoping the trend continues. (And food seems less of a factor, because I had a little wheat and a lot of dairy yesterday, and no problems this morning. Other than being tired because I only got about 6 hours of sleep.)

I hope the blood test results come back today or tomorrow, though they only show celiac or true allergies (IgE-mediated), not intolerances. There's a hormonal factor as well; this seems to be more around my period than not. So maybe after I go to the GI and she has no ideas, it's time to see a GYN.

My body is trying to kill me.

[leora.livejournal.com]

I kept thinking, maybe it's the phase of the moon, but I didn't write that, because given that hormonal cycles roughly link to moon phases (or can), it didn't work as a joke. At least that's some hint at a pattern. I hope it'll be a useful one when investigated.