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

[botia.livejournal.com]

I am so sorry you're going through this. I hope you figure out what it is soon, and that it is something treatable, or at least something you can get managed somehow.

I have had my gallbladder out, and others who've also had theirs out after a long, miserable battle with gallbladder attacks can tell you what a relief it is, if that turns out to be the real cause. I've also had IBS symptoms for years, and only in the past year have I finally identified the triggers and been able to reduce the symptoms. There is no misery like GI misery. I sincerely sympathize with your suffering, and hope there is a solution just around the corner for you.

[feuervogel]

Thank you!

They took a gallbladder ultrasound, which came back 100% normal, but maybe the GI will order further studies. The part that's got every doctor I've seen so far (my GP & 4 in the hospital (ER, night float, med team) befuddled is the symptoms being worse in the morning and gone by afternoon. Like morning sickness, but I'm not pregnant. (They checked in the ER.)

I hope celiac comes back negative. I don't want that. Yeah, having a solution would be great, but. I like beer way too much to give it up.

It's been 5 days without wheat, and 3 without soy (and corn, though I had some HFCS in the swig of Coke I took last night to get through the caffeine detox). Symptoms aren't consistently better, or worse. I'm seriously confused.

[botia.livejournal.com]

Is there some kind of condition of the reproductive organs that might cause a mimicry of the symptoms of early pregnancy?

And yeah, going gluten-free is hard in all kinds of crazy ways. I have had far too many people in my life develops intolerances, and noooooo way would I wish that on someone I liked.

[feuervogel]

All I've found is choriocarcinoma, which is cancer of the placenta, and from what I read, it doesn't occur outside pregnancy. And there's always ovarian cancer.

At this stage, I wouldn't wish this on my worst enemy DX

Brainstorming: time of eating?

[beth_leonard]

Just a brainstorm: does the timing of your eating matter at all? I know with pregnancy morning sickness they call it morning sickness because it frequently happens in the morning (duh) but that's because your stomach has had a chance to completely empty in the night. Every time the stomach completely empties (>1hr without any food or drink) nausea occurs.

For women who get it, eating crackers just before bed and each time they wake up in the middle of the night eating a few more, helps reduce symptoms quite a bit. I don't know if that has any bearing on your condition at all, but it's just a brainstorm because it's hard to watch friends suffer and not be able to do anything.

--Beth

Re: Brainstorming: time of eating?

[feuervogel]

I haven't noticed a correlation between eating before bed or not and nausea. (I've been keeping extensive notes since I got out of the hospital.) I only wake up once during the night, usually around 5 am, to pee, and I've never had nausea at that time. Sometimes it happens after I drink some water (which I always do after I wash my hands), sometimes it waits until after I get out of the shower.

It's seriously mindboggling.

[leora.livejournal.com]

I really hope they can figure this out for you soon. I'm also hoping for a good solution, but whatever the issue is, knowing sooner would be better. I know I hate the not knowing, and with knowledge, you can better target your actions to help and the detailed notes may help with that too if they turn up a pattern.

[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.

[skogkatt.livejournal.com]

Dude, this totally sucks. I know I keep saying that, but it just keeps being true. Not okay.

[av3rnus.livejournal.com]

Yes, I had the flu for a week or so and it sucked. For a week. I never said it was the same thing as what you have now, but trying to imagine having it go on indefinitely is the best that I can manage for comparison. Sorry.

I'll stay optimistic on your behalf. I really wish I could do more for you (and please let me know if there's something I can do!).

[feuervogel]

I *know* you're trying to offer sympathy. It's what people do. I'm just frustrated at everything.

Thanks. I'll let you know. I've never been comfortable asking people to do things for me, though.

[pharna.livejournal.com]

Damn, that sucks BIG TIME.

You're eating what I usually call the "sick diet." My personal sick diet is: absolutely NOTHING raw, mostly steamed white rice, nothing sweet(no desserts, no honey, no fruit) and forget about dairy.

Being Japanese, maybe I can help you add some variety to your rice diet, seeing as to how we moonies eat rice 3/24/7/52.

Okayu: Rice Porridge. Just use a little too much water and cook the rice a little longer. For flavoring, add some bonito fish flakes, grated ginger, green onions. I forget, do you eat eggs? If you can, add a little bit of boiled egg for extra protein and flavor.

Mochi: Rice Cakes. Roast these in a skillet with a little bit of soy sauce. Wrap with seaweed. Chew very carefully.

Chazuke: Take regular steamed rice, maybe rice that's a little itty bit stale. Add a little bit of wasabi, furikake and douse with green tea. Mix. Eat. Be happy.

Vegan Chirashi-sushi: Make sushi rice(use 4/5 the water, after it's done cooking, add 1/5th the water's worth of sushi vinegar, mix rice vigorously.) Add thin, steamed shiitake slices, thin carrot slices, green peas, sesasme seeds, thin bits of seaweed.
I make it vegan if I'm sick, if I'm my usual happy healthy self, I add steamed shrimpiess, minced tamago-yaki, raw snow pea slices and maybe some teriyaki-ish roasted fish bits.

Do you have like, O157 ecoli or something?

[feuervogel]

Thanks for the recipes! I'm off soy still, so soy sauce is out, sadly.

I probably don't have O:157; I don't have the right set of symptoms, and I'd probably be dead by now.

[pharna.livejournal.com]

Damn, that rules out like...so much stuff. No soy sauce, no miso, no edamame which are all things I swore by on my sick diet to restore electrolytes after my water binges(damn, having the runs from those types of illnesses had me chugging water like fratboys do beer.)

I guess you can use sea salt for a soy sauce substitute. I know it's blasphemy but hey, when you're sick, you're sick.

Hope you find out what the hell is going on...

[feuervogel]

I KNOW. I'm sad. But if I get a call from my doctor with the test results soon, I'll know if I'm allergic or not. (Won't know if I'm just intolerant, though; the allergy test looks at antibodies.)

I have gluten-free veggie broth, which I can use for flavor, and I really want to try this. Rice cookers are awesome tools!

I have a GI appointment in 6 days, and the food allergy/celiac results should be back by the end of this week. It may not even be GI; it could be nasty endometriosis (which makes sense with timing issues, since I've been on my period since just after this latest bout started (yes, like 10 or 11 days now. I have hell periods.)).