I never wanted to be one of those paranoid people

April 26, 2016

We all know one of those people. They’re super paranoid about what they eat. Was the chicken cage-free? Was the feed free of antibiotics? What exactly is in that dish? What IMG_20160426_141926brands of ingredients were used?

I was never going to be one of those people. Ugh!

And yet, I am.

When I first went gluten-free, I avoided bread, pasta, and other obvious foods. Over time, I started eliminating more and more. Then I paid attention to non-food items, like toothpaste and floss. I was doing a lot better, but I was still sick.

I made phone calls. I checked on hand lotion and sunscreen. I washed my hands before I put anything in my mouth – even a Tic Tac!

I learned about surprising places gluten hides, like lemon juice and cooking spray and got rid of those.

Still, I was getting sick.

Then I found out about kissing. Damn it! If I kiss someone who has been eating or drinking gluten, I’ll get sick. Well, that makes dating a lot more awkward! So I’ve been careful about that, too.

Still, I was getting sick. It was a lot less often, but it still happened. What was going on?

Then I spent 6 weeks at home recovering from foot surgery. I barely left. I ate only food that I’d prepared or carefully checked. And I didn’t get sick once. Hmm…

It felt amazing to not get sick at all!!! I wanted to keep that up! But how? I started being super careful about everything. Ok, I was a bit paranoid. I didn’t eat anything unless I was absolutely positively certain that it was safe. If a friend said something was gluten-free I quizzed them carefully, and then I probably still didn’t eat it. But it was worth it. I remained ok!

Last weekend I went to a family sedar. My mother hosted and was her super wonderful, considerate self – except for the matzah and matzah ball soup, the entire meal was gluten-free. Still, when she and my aunt went into the kitchen to get the food, I asked them to wash their hands because they’d touched the matzah, which has gluten in it.

I’d become one of those people. I hate it. But you know what? It’s a hell of a lot better than being in so much pain. So I’ll keep on being one of those people. So be it.

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

Trying not to chicken out

January 28, 2016

I’m supposed to travel today and I really don’t want to. And I’m sad about that, because I know I should be excited. But then, I’m trying to get away from shoulds anyway….

We’ve been friends for over 20 years. At first I would visit her. Then I’d visit her and her boyfriend. Then I’d visit her and her husband (same guy.) Then I’d visit her, her husband, and their kid. I loved all of these visits. Sure, they were different. The activities were different and the atmosphere was different, but I always had fun. In the early days I’d fly to visit her. Once we both flew to a city between us, stayed in a hotel for a weekend, and had a fabulous time exploring a new city. For the last 8 years I’ve been able to drive to visit her, which is fantastic. Since I live near her parents, she stays with them when she comes to town and we get together alone or with friends or with her entire family and we always have a fantastic time. Always.

But a few years back, visiting got harder. My health got worse. I’d visit her, her husband, and their two kids, and I’d be thoroughly exhausted. Each visit got harder, just like other things in my life got harder. But still, I visited. Even though each time, I felt the energy draining out of me.

Then I stopped visiting for a long time. I didn’t want to stop, but I just couldn’t manage it anymore. It was around the time I stopped working. In fact, my visit to her house was the last trip I made before I left my job. We went apple picking and had a great time and by the time I got home, I was a mess.

Now I try visiting once or twice a year. Last summer I visited her and her youngest, while her husband was out of town with the two older kids. That was tiring, but not too bad. It was summer, and I feel worse in the summer, so there was that. And now it’s winter, and I feel better in winter, and I’ve got my new sleep machine helping me. But the idea of 3 days with her, her husband, and their 3 kids, is just exhausting to consider, never mind actually doing it.

I don’t want to go. I want to stay home. But I want to see my friend. I wish I could visit for a day, but it too far of a drive. I wish I could stay in a hotel where it would be easier to rest, but that’s not in my budget. I wish I was health, but that’s just not my reality.

She’s told me several times that the kids are really excited to see me. She’s asked what I’d like to eat while I visit. She’s a great cook, and does a wonderful job of making gluten-free foods that I can eat (while also avoiding all of my other trigger foods.) We’ve decided that I will go out with her and the kids either in the morning or in the afternoon each day, but not both. We’ve learned that I can’t handle both. We have it all planned out. But I’m still nervous.

I tried asking myself, “What’s the worst that could happen?” Well, that’s a bad question to ask. I know what could happen. I remember when I visited last winter and I was so sick that first night. Like, the maybe-it-would-be-easier-if-I’d-just-die kind of sick. It was horrible. I’ve felt that way before, but dealing with it in someone else’s home was so much worse. Of course, that’s not the worst, but it’s the most likely. And I can’t stand the thought of it.

It’s almost noon and I’m still in my pajamas. I need to shower, get dressed, eat lunch, pack up my bag, then drive. That will use up most of my energy for the day. And then there’s dinner with the family and 3 kids all wanting my attention at once because I haven’t seen them in months.

I love them. I really do. And I’d love to see them. But I don’t want to go.

Does this sound familiar to you? Please share your experiences with this kind of thing.

P.S. Yes, I have the option of not going. But I want to see my friend and her family. So I’ll go. But I’ve promised myself that if it’s too much, I’ll leave a day or two early. I just hope tonight is ok….

13 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

We need to talk about poop

September 18, 2015

There are certain things we don’t talk about publicly, but we know that they aren’t being talked about. Or maybe they’re occasionally mentioned, but only in vague terms or to certain people. You’re probably thinking about things like money and sex right now. Would you ask a stranger, or even a friend, how much they earn for a living? There are some friends I’d ask, but very few. Would you ask them which sexual positions they prefer? How about asking where their erogenous zones are?

But there are things we talk about even less than money or sex, and one of those is poop. We just don’t talk about it. But we need to.

My doctors over the years have asked me about my sex life. We don’t get into details, but they ask if I’m sexually active, if I’m care, if I need testing for STIs, etc. But they never asked about my poop. You’d think a primary care physician would ask at a checkup, “How often do you have bowel movements?” But no, not once.

I was an adult before I learned that I’m supposed to poop Every. Single. Day! Who knew? Not me. How would I know, when it’s something no one talks about? Around that time I also learned that loose stools aren’t normal. Sure, I felt lousy and pooped erratically, but I had no idea these were signalling a problem that needed to be addressed.

As it turns out, poop is important! The frequency, color, density, and shape of your stool says a lot about your current health. It’s something that I believe every doctor should ask about at an annual checkup, and certainly every gastroenterologist should ask these questions. Patients should be encouraged to keep a poop diary for just a few days each year, right before their checkups, so they can accurately answer these questions.

In my case, it would have been helpful if someone had realized much sooner than days without pooping and then a half dozen bouts of diarrhea in a day were, you know, a Bad Thing! And that’s just me. What about the thousands of other cases out there? I know some of you have had gastrointestinal problems. How long did it take for someone to realize there was a problem? Would they have figured it out sooner if they’d been asking you about your poop?

Of course, the problem isn’t just the lack of discussion at medical appointments. We don’t talk about it in general. It’s not like I ask a friend about their poop habits or tell them about mine. There’s no common knowledge here. There’s a running joke on The Big Bang Theory about Sheldon scheduling his daily bowel movement, and how he finds it very odd that others have bowel movements whenever the urge strikes them, without any schedule at all. Ok, maybe Sheldon’s approach is unusual, but at least he makes sure he has a daily, healthy bowel movement and he isn’t afraid to talk about it. The part I find interesting is how off-putting it is for everyone else when he discusses it. Sure, maybe it isn’t something to bring up at dinnertime, but aside from that, what’s so bad about it?

There’s less embarrassment around a bloody nose, burping, hiccuping, crying, peeing…. all things that involve natural bodily processes and/or fluids. Why is that? Why is it that someone can say, “I’m going to pee,” or “I need to take a whiz,” and that’s ok? But the moment someone says “I need to go poop,” or “I need to take a dump,” it’s considered inappropriate? Hell, some people try not to poop at their date’s house for the first several months of dating!

I think our society has gone way overboard on its aversion to any discussion whatsoever of poop. It’s time for that to change. I say, let’s discuss pooping just like any other bodily process. I highly doubt it will hurt anyone, but it may just help a whole lot of people.

What do you think?

4 Comments | Educating, Expectations, Frustration, Gastrointestinal, Healthcare, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

Feeling sick from imaginary germs

August 31, 2015

It isn’t always absurd. If a friend tells me she’s sick, and we just saw each other the day before, it makes some sense that I might worry I’ll get sick, too. Of course, what doesn’t make sense is when I immediately start feeling symptoms.

What makes less sense is when a friend mentions on Facebook that he’s sick and I start feeling sick, even though he lives 3000 miles away and we haven’t seen each other in a year.

It hasn’t always been this way, but somewhere along the lines, my anxiety about health issues snuck up on me and now I often feel sick at just the mention of illness.

Tonight was even worse: I felt sick as I listened to the narrator in the audio book I’m listening to describe feeling ill. She’s a fictitious character in a novel, and she probably isn’t even sick (or if she is, I’m guessing that it’s relevant to the plot in a very specific way, but I digress) and even those imaginary germs from a character in a novel got me feeling queasy.

It’s absurd. It makes no sense. But it happens all the time.

If anyone can explain this to me, I’d really appreciate it. Maybe if I understand it, I could learn to somehow avoid it!

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Rants, Support, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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