The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

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Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.


The inconvenience of diarrhea – even at home

February 5, 2020

No one likes to talk seriously about poop. It’s something we all* do, yet it’s treated as an unsafe topic. Commercials for diarrhea medications are laughed at by people. Folks snicker at farts. No one feels comfortable on the phone saying, “Hey, let me call you back in a few minutes. I just need to run to the bathroom.”

For most people, it’s easy to avoid the topic. They don’t think about their poop much. But then there are those of us with digestive issues. I talk about poop with a lot of my doctors. Color, size, consistency, frequency, and odor are questioned and explained. I keep an eye on things. For too many years, I didn’t realize how abnormal my bowel movements were. If I had, maybe I could have been diagnosed a lot sooner. If my doctors had asked my questions about it, I’m guessing I would have been diagnosed sooner.

Well, here on Chronic Rants, we talk about poop. And today’s rant is about the inconvenience of diarrhea. I was having a perfectly fine day yesterday. I was being productive around the house. I wasn’t feeling motivated to work on a project that I’ve been trying to get done, but aside from some reduced motivation, everything was normal. I was on track to go out in the afternoon and evening.

In the afternoon I felt off somehow. I’m still not sure how. Maybe a bit low in energy? I decided to stay in for the afternoon and only go out in the evening. My stomach started to feel a bit off. Again, I’m not sure what exactly felt wrong, but something did. I pushed myself to go for a walk. It was a nice walk, with a clear blue sky overhead – a real treat! I stopped to chat with a neighbor and pet her dog for a while. I wasn’t feeling quite right, but I pushed through; at least I was petting a cute dog!

When I said goodbye to the neighbor I continued on my walk in a big loop that would end up at my apartment building. Then I felt that feeling and I knew: I better get home. Quick. I cut back to take a shorter route home. There wasn’t much I could do. I was walking within my apartment complex, so there were no public bathrooms around. I walked faster. I saw a neighbor that I know up ahead. I slowed a bit so we wouldn’t cross paths. I hated to slow, but making small talk would have been worse. I knew I was walking funny, trying to clench certain parts and walked quickly at the same time. I got into my building and felt that bad feeling. I fumbled to open my door. I tore off my coat and rushed to the bathroom. In my anxiety, I fumbled with my pants. I got them down just in time.

I think a few more seconds could have been my downfall. But I made it. Explosive diarrhea isn’t fun, but having it in public and in my pants would have been so much worse.

I felt a bit better after that. I had gotten the bad stuff out of me, whatever that might have been. But here’s the thing: I felt messy. I cleaned my ass area the best that I could, but it wasn’t good enough. I don’t have a bidet. Chances are, I was clean anyway. But I didn’t feel it. So I jumped in the shower. I had already showered that morning. The diarrhea had left me feeling weak and tired. But what else could I do?

I got undressed, then found myself back on the toilet. Eventually I took that shower. The hot water felt great. After a while, I got out, exhausted, but feeling better.

Obviously I wasn’t going out. I couldn’t be sure the diarrhea was over and, even if it was, I was now too weak to go out. I put on super cozy cloths and settled under a warm blanket. I spent the night watching tv and knitting. At some point I wanted food and decided to keep it simple. I cut up some garlic onions, and carrot. I added homemade chicken broth from my freezer. I threw in shredded chicken that I keep in my freezer. I added gluten-free ramen noodles. Voila! An easy home made chicken noodle soup. It was just the right dinner for that kind of night.

I woke up feeling like shit, no pun intended. That diarrhea could have been so much worse. Still, it stopped me from doing so much yesterday, and today as well. It’s frustrating as hell. And it’s not something I can talk about in a socially acceptable way. I can talk about a recent sprain and my friends shower me with sympathy but bring up diarrhea and suddenly I’m persona non grata.

We all* poop. For some of us it’s more of a struggle than for others, but it’s something we all* do. So maybe it’s something we should all be able to talk about? What’s your experience been with this type of situation? Let’s talk about it!

*Folks with colostomy bags still produce feces, though the verb may not apply.


Not missing sudden onset diarrhea

December 28, 2019

I quickly packed up my laptop, water, reading glasses, phone, and jacket, and walked hurriedly to find the nearest restroom. Sitting on the toilet, I wondered what caused this sudden bout of diarrhea, since this hasn’t happened in ages. And then it hit me: this hasn’t happened in ages!

It feels like a fucking miracle.

There were the times like this that I was able to walk quickly to the closest restroom. There were the times I was walking around outside and had to walk into stores, hoping they would let me use their restroom, sometimes begging, sometime being turned away. There were the times I was walking through less commercial areas, and wondered if I would find a toilet in time. There was the time I was in bumper-to-bumper traffic on a highway in another state, wondering if I would have to deal with diarrhea in the tall grass on the side of the road. Thankfully, I made it off the highway at the next exit, immediately found a motel, and was allowed to use the restroom. There were the times it hit me at a friends’ home, and I was embarrassed by what I thought they might hear and/or smell, not to mention how long I would spend in the restroom. There were a lot of near misses. There were a couple of times that I pooped my pants.

And I haven’t dealt with any of those in ages. In fact, the only diarrhea I have had this year has been easily explainable. It was either due to gluten or my period (maybe I will get my period today or tomorrow?) That was it.

The thing is, these bouts of sudden diarrhea weren’t short-term. This has been happening since my teen years. After 25 years of it, of course I was aware that it had stopped. I have been very aware of how much better I have been feeling, and am incredibly grateful for it. Even so, sitting on the toilet in the library 20 minutes ago, I felt immense relief and gratitude that this is no longer a regular problem for me. I still have loose stools, but not these sudden onsets where I must run to the nearest toilet. I no longer worry about it when I go out. I no longer make a point of searching out bathrooms in public places, just in case. I no longer feel the fear and anxiety of this unpredictable affliction. I feel freedom from all of that.

I am bitter and resentful that this wasn’t addressed properly 25 years ago, but I am also thrilled that it seems to be resolved now. I hope that it never returns.


Was it all Celiac to begin with?

November 16, 2019

The earliest potential Celiac symptoms I remember began when I was 12. The first time a doctor suggested that I go gluten-free I was 32. Hmm. A bit of a problem there?

I went to the doctor for the extreme constipation I had as a child. I drank a lot of disgusting prune juice and still had rare, difficult, painful poops. Eventually that seemed to resolve itself. End of discussion.

A year or so later I had unexplained joint pain. I was told it was tendonitis for a long time but even the doctors had to admit that didn’t seem to fit the type of pain I had. I was told to wear braces on my wrists. The pain came and went. They didn’t know what else to do. I spent many years trying to figure out this pain but as far as they were concerned, the discussion was over.

As a teen I had horrible stomach pains, nausea, and diarrhea but had no idea how abnormal this was and told no one for several years. Eventually I did talk to a doctor. I asked to be tested for lactose intolerance. I was told there was no such test (a lie!) Instead, the doctor told me to keep a food and symptom journal. After a few weeks I gave him my notes. He told me that he showed it to a nutritionist and that it wasn’t lactose intolerance. End of discussion. No further examination of my obvious problems. A few years after that I was diagnosed with irritable bowel syndrome. I did some research and saw that my symptoms didn’t quite align with IBS, but it was the only diagnosis I was given, so I went with it.

Later in my teens I was far too thin. I occasionally skipped dinner. I was diagnosed with anorexia despite the fact that I ate breakfast, lunch, and snacks every day, I only skipped dinner 2-3 times per week at most, I had digestive problems, and I was so alarmed by my own weight loss that was the one who went to my parents with a concern that something was wrong and asked to see a doctor. The doctor put me on a high calorie diet. I eventually gained a little weight. End of discussion.

Around this time I was diagnosed with depression. I was sent to therapy that did nothing. I was put on anti-depressants with horrible side effects. After less than a year I was taken off of the medications. The depression was magically gone. End of discussion.

And lest anyone think that my medical history fell through the cracks, all of this occurred at one medical facility, where all of the doctors could see all of my records. How did they all miss this?!?

Was this necessarily Celiac disease? No, of course not. But when a child has constipation, diarrhea, weight loss (I was down to 89 pounds! I’m short, but I should never have lost that much weight – I should have been at least 100-105 at that point), joint pain, depression, nausea, stomach pain, and more, how did they not at least consider this possibility?!? This was the 1990s and while Celiac wasn’t as well known then as it is today, there was plenty of awareness. The doctors should have known.

An interesting thing has happened in recent weeks. After some time on hydrocortisone, my brain fog has been lifting and I am thinking more clearly. I have less fatigue. With that layer of haze lifted, I can better feel and understand what is happening with my body. I can think it through more clearly. And I wonder if maybe all of my problems actually stem from Celiac disease.

As regular readers of this blog know, I have a long list of diagnoses. But the thing is, a lot of them are comorbidities with Celiac. Many others are known to be secondary or tertiary issues. For example, I have polycystic ovary syndrome, but after many years of struggling with PCOS symptoms, they finally went away once I was on a proper dose of the right thyroid medication and fully gluten free. I now get my period at least every other month and I rarely have super heavy bleeding. I was recently diagnosed with SIBO, but it’s known that small intestinal bacterial overgrowth is more common in folks with Celiac. My digestive issues, aside from some SIBO symptoms, have all completely resolved now that I am 100% gluten free. I still have constant joint pain, but it has improved greatly thanks to treatments and, I suspect, being gluten free. My adrenal fatigue, one of my most disabling conditions, was caused by long term chronic illness. My Hashimoto’s thyroiditis is a comorbidity with Celiac.

All of this makes me wonder, what if I had been diagnosed with Celiac at age 12 (or younger)? If I had gone gluten free back then, could this have been avoided? Maybe the joint pain would have resolved. Maybe Hashimoto’s would never have developed? Mostly likely, if the Celiac and Hashimoto’s (if I even had it) had been treated properly to begin with, adrenal fatigue would have never begun. That means I would have never become too disabled to work.

That’s hard to think about. This was avoidable. Somewhat. I would still have had problems, of course. I would still have had to avoid gluten, which would have probably been a lot harder as a child in the 1990s than as an adult in the 2010s. I would have still gotten glutened and had to deal with the fallout. I would still have had autoimmune disease and would likely have had some fallout from that; some folks with Celiac feel fine, but others don’t. My health would not have necessarily been perfect. But it would have been a lot better.

This is only speculation of course. I can’t be sure that all of my health issues stem from Celiac. Over the years I have had several other theories about how my health issues all connect. Each one has felt closer to the truth, and this one does as well. I don’t know if I’m right, but I suspect that I’m at least close.

We need better screening here in the U.S. and around the world. Estimates of folks with undiagnosed Celiac are high, as much as 90%. I don’t want to see others live with what I have had to live with if it can be avoided. And I’m one of the lucky ones; some folks die from undiagnosed or late diagnosis of Celiac. If you or someone you know has several of the 300+ Celiac symptoms, please consider testing. You can see a shorter list here, but it is missing a lot of categories. And if you have experienced something similar to what I have described, please comment below. It is important to gather these stories in order  to highlight the need for more testing and awareness.


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