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.


The help I didn’t know I needed

January 29, 2020

The last week and a half have been really rough. But I’m trying to learn from it.

First there was a minor injury. I’m still not sure how it happened, I just know the pain was intense and different than what I typically experience. That lead to a visit to the doctor followed by an MRI later that day. I was out of the house, in pain, rushing around, for 8 hours. Not surprisingly, between that rough day and the pain, that lead to increased adrenal fatigue.

Here’s where I made my mistake: I didn’t take an extra dose of my adrenal medication on that day when I was in the most intense pain. I didn’t take it on the day of the doctor visit and MRI, either. Nor did I take it in the days following. I kept thinking that if I got some rest, I would be ok. I was wrong. Finally, I took that extra dose two days ago and I am finally feeling like my old self again. I’m still in a lot of pain, but at least the fatigue isn’t dragging me down to the point where I can barely function. I am once again able to answer emails, run small errands, and write this blog post.

2020-01-29 12.36.18

So now it’s time to learn from my mistake. You see, I thought about taking that pill last week, but I dismissed the idea. The fatigue gave me brain fog, and I couldn’t think clearly enough to realize that it was what I needed most. I told myself that I would be ok with some rest even though I should have known from past experience that it wouldn’t suffice.

Meanwhile, I saw my mother twice that week. The second time she commented on how much better I looked. I know I didn’t look that good, so I must have looked truly horrible the first time. Friends who don’t usually check on me were texting daily to ask how I was feeling. Other people knew I was struggling, even if I didn’t see it myself.

So this morning I sent a text message to a few select people: my parents, several friends who are my chosen family, and a couple of other close friends. These are the people I feel are most likely to know when I’m suffering from adrenal fatigue. It started with, “Hey folks, I want to ask a favor.” I went on to explain my mistake in not taking my adrenal medication sooner and why it happened: fatigue leading to brain fog which affects my judgement. Then I continued, “So the favor is simply, when I say that I am struggling with adrenal fatigue, please remind me to consider taking some extra of the medication.”

Ideally, I would make myself a note and leave it someplace that I would see it, but the truth is, when I feel this bad, I won’t see the note. Or I will see it and ignore it. I spent two days doing little except watch tv. I could barely get dressed. In that state, I can’t trust myself to be the only one to look out for me. That is why I ended the message with, “At the end of the day, of course this is my responsibility. But since you are the folks I am most likely to talk to about ongoing symptoms, I wanted to reach out because sometimes I need a bit of help. Thanks for being awesome and supportive in general!”

I think this is something we can, and possibly should, all do. It is especially important for those of us who live alone, or who live with others who are not supportive. Find one or more people in your life who you can trust, and simply ask them to remind you to do a couple of specific things when they see you struggling. Maybe you want to give them a short list, and ask them to send it to you. Maybe, like me, you only want to ask them to remind you of one thing. This isn’t the kind of thing you will ask of everyone you know, but of just a select few who know you well, who support you, and whom you trust.

Part of self-care is asking for help. Today, I took that step. What about you?


My new gym routine

January 1, 2020

If you have been reading this blog for any length of time, you probably find this title strange. But it’s true, I have a new gym routine!

About 10 years ago, I got into my first gym routine. I had quit my job, and decided to take good care of my body during my time off. I found an inexpensive gym near me where 2 or 3 times each week I would lift weights as my physical therapist had taught me and do some pedaling on the recumbent bicycle. It went well until I got a job.

I tried to keep it up. I went to the gym a few times on lunch breaks, but it was too rushed. I went in the evening a few times, but I was so tired. Mornings weren’t an option; it was hard enough to get to work on time. I went less and less often before finally giving up.

I didn’t know it at the time, but my body was suffering. Untreated Celiac disease, improperly treated hypothyroidism, and the start or worsening of adrenal fatigue were taking their toll. Eventually I left my job and went on disability benefits. So many days, it was hard to walk to my car. The gym was out of the question.

This time around it’s totally different. My approach is, something is better than nothing. This won’t be true for everyone, of course. For a lot of people, even tiny bits of exercise will make them worse. I’m pretty sure I was at the point for a while. Still, I am remembering 15 years ago when I was having a tough time, and a friend encouraged me to lower the bar and do a lot less. Instead of taking a long walk, or even aiming for a shorter distance, I set a time limit. My goal was a 10 minute walk every few days. That’s it. Five minutes down the street and then turn around. I could walk as slowly as I wanted and needed to. This was a great start, and I found myself walking faster, going farther, in those 10 minutes. I no longer saw snails passing me by. Eventually I increased the time to 15 minutes, then 20. Of course, that was a long time ago, and my abilities are quite different. Still, I remember slowly building up from something so tiny.

For a long time now my medical practitioners have been encouraging me to exercise more, especially because they know that there is a gym in my apartment complex. Each time I tried, though, it went badly. Some days I was ok, but others I was exhausted and felt horrible for the rest of the day and sometimes even the following day. Since I never knew how I would feel, going to the gym felt too risky, so I often skipped it. If I had plans in the afternoon, I wouldn’t go in the morning. It was a big hassle. I had to change my clothes, get over there, lift a bunch of weights, ride the bike, get home, and shower. It was a lot!

This time is different. I figured something was better than nothing. Last year an occupational therapist wanted me to do a specific set of weights. Under her supervision it went well, but when my sessions ended and I had to keep it up on my own, I couldn’t, for all there reasons I just gave. I would have a setback after working out, then by the time I went to the gym again weeks (or more) later, I had to start over at a lower weight again. It was incredibly frustrating.

Then I started to think, since that one exercise is what I most want to do at the gym, what if I do only that exercise? No others. I wouldn’t exhaust myself because I wouldn’t do other weights or any cardio. I wouldn’t have to change my clothes; I wouldn’t be exercising my lower body so jeans and snowboots would be ok, and I wouldn’t be sweating. This also meant that I wouldn’t have to take a shower afterwards. I could even do my exercise on my way home from someplace.

For the past two months, I have been going to the gym twice a week. If I need to move a day because I don’t feel well, that’s fine. There’s no pressure. I simply want to keep going. I am only there for 5 minutes, if that. Yes, I feel self-conscious sometimes when folks see me walk in, and then see me leave mere minutes later. But you know what? It’s better than not showing up at all!

I was supposed to go to the gym today, but I strained a muscle in my neck and I am worried about injuring myself. There’s no guilt. No concern. I will go when my neck feels better. If I miss an entire week, that’s not the end of the world. I will not let it derail me. I hope I can get there tomorrow, though, because I enjoy the feeling of accomplishment, even though it is too soon to notice a big difference in my strength.

I am not doing a lot compared to my peers. This is small stuff. But you know what? I can’t get to the big stuff (ok, the slightly bigger stuff) without starting small. Some people can, but I can’t. That’s ok. And even if I never do more than what I am doing right now, at least I’m doing something. This is manageable, which means I’m actually doing it. This is my longest gym-going streak in the past 10 years and I plan to keep it up. Wish me luck!

Meanwhile, could this approach apply to something in your life? Maybe it’s exercise, a dietary change, cleaning your home, making new friends, or something else. Is there some way that the “something is better than nothing” approach could help you, too?


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.


Gaslighting’s toll

December 17, 2019

If you had asked me a few weeks ago if I had ever been the victim of gaslighting by doctors, I would have said no. Which is sort of funny, because this blog is full of examples, written over the past 8 years. Somehow, I didn’t see it.

Sure, I knew that doctors had told me that it was all in my head. Or that I was making it up in order to get attention. But that’s not the same thing. Except as it turns out, it is.

My therapist used the word last week as we discussed this topic. As soon as she said “gaslighting” it clicked that yes, that’s what had been happening. A few days later, someone used the word again as they talked about medical professionals. And it all fell into place.

I have dealt with gaslighting by doctors for almost 30 years, so no wonder I get nervous about appointments. No wonder I have an inherent distrust of doctors. It makes sense that on dating apps, I avoid doctors and other medical professionals. It all fits.

The problem is, I still need doctors. I need them to order tests and to write prescriptions. Sometimes, I even need them to help me figure things out. The problem is, I don’t trust them. That’s why I was so surprised by a simple suggestion several weeks ago. I was debating whether or not to take a prescription. My symptoms had gone away before I had been able to start it, and I didn’t want to take it unnecessarily. Talking to my therapist about this conundrum, she suggested that I ask the prescribing doctor for his advice. Wow, I hadn’t thought of that! She wasn’t surprised. I learned a long time ago not to trust doctors. I figure things out for myself as much as possible. Still, in this case it made sense to ask, and I’m glad that I did.

I know there are good doctors out there. Some have them have been incredibly helpful. Not all of them subjected me to gaslighting. But just like I clearly remember the time I backed into a telephone poll while parking last month but have completely forgotten the dozen other times I parked in that same spot without hitting the poll, it’s the doctors who treated me badly who stand out most in my mind. They are the ones that scare me, that put me on edge, even when I know I still never see them again.

Sadly, I am not alone. There are many of us who have been subjected to this horrible treatment. It is no wonder so many of us distrust doctors and the overall medical system. I am now working on this with my therapist. I will never undo the damage that was done to me physically by ignoring my symptoms, but maybe one day I will have just a bit more trust in medical professionals? Maybe. Until then, if you have been, or are currently being, gaslit by your doctor, know that you’re not alone. And if you can, find someone better.


The all-too-elusive “day off”

December 4, 2019

I don’t have a job, but I work damn hard. Every day is long and full. Some days I go to medical appointments; some days I see friends, though not as often as I would like; some days I stay home and work on a long list of tasks. None of those are relaxing. Even when we don’t work traditional jobs, we need days off. As I sat down to write today, this felt familiar, so I did a quick search on this site and found that I’ve written about this before. In fact, I’ve written about this several times, and the past two were last December and the December before that. Hmm. That might be telling me something.

2019-12-03 09.08.11

I have been making more of an effort to give myself space for relaxing time. In August, during a couple of abnormally not-incredibly-hot weeks, I took several afternoons to sit outside and read a book or work on some writing. It was lovely. But a full day? That was rare.

This week we got a snowstorm. In the Boston area this isn’t odd, but it doesn’t usually come so early. I saw the forecast, looked at my calendar, and decided that I needed to take advantage of the strange weather. I was exhausted. I needed a break! And I had a big week coming up, too.

So I took a day off. I didn’t feel too sick to do things; I simply didn’t do them. I puttered around the house. I did some laundry, but now that I have laundry in my apartment (such luxury!) that’s not much of a chore for me. I chatted with a friend via video for a couple of hours. I spent at least a couple of hours reading a novel. I baked cookies. I watched the beautiful snow falling outside, clinging to trees and coating cars. My plan had been to spend a few hours watching tv while crocheting in the afternoon, but somehow I never found time for that. I still did it after dinner, though, like I do almost every night.

Several times during the day, I felt at a loss. I was supposed to be doing something, right? What was I supposed to be doing? What was it? I kept looking at my “to do” list for the day, which is always on my desk. But this time, it was mostly empty, just containing reminders to clear snow off my car, read a book, relax.

I somehow filled the day, and felt so good by the end of it. I needed that. The next day came part 2 of the storm and I wanted to take another day off, but I had too much to do. Still, it was a reminder that I need this. We all do. We need days when we aren’t trying to get lots done. I may not do a lot in a typical day by most people’s standards, but for me it’s a lot. It’s now 3pm and I have made several phone calls, gone to physical therapy, gone to the bank, answered some emails, eaten lunch. For me, that’s a lot, but it’s more than that: it’s the obligation. What I need is days without those obligations. Days of freedom, where I can do whatever I want, whenever I feel like doing it. Again, I think that we all need that sometimes.

Not to sound like a broken record (do people still even know what that means?) but I’m going to make an effort to take more days off. So far, I have succeeded in giving myself afternoons without obligation. Now it is time to give myself more full days without obligation. These will be days for myself, with no appointments, no plans, no lists of tasks to be completed. It can all wait. One more day won’t cause problems. It’s time. So from now on, I will aim for one day off every month. Wish me luck!

Do you take days off like this? Do you find it difficult to schedule them in, or easy to do? Please comment and share your experience with days off while disabled.


How my doctors’ office lost their phlebotomy lab

November 29, 2019

I emailed my doctor a reminder that I needed to have some blood tests repeated. When I first started going to that office, I lived less than a mile away. On days that I felt well enough, I walked there. Now I live a 30 minute drive from there, so it’s harder to get blood work done. That’s why I figured this was good timing; I had an appointment the next day with another practitioner in the office. I wasn’t prepared for my doctor’s response. It basically said, the order is in the system but they no longer have a phlebotomy lab, and it listed some other places I could get my blood draw.

WTF?

The next day, I saw the other practitioner and I asked about the loss of the phlebotomy lab. Was it temporary? Why on earth would a medical facility no longer have the ability to draw blood?

Her answer was simple and terrible: it was not considered cost effective by the hospital that was now in charge.

Several years ago, this independent facility became part of a local hospital system. This happens a lot in my area. For me this was good in some ways, because now they took my insurance, while they had not previously. On the other hand, the doctors lost some of their independence. Where before they referred patients to the best doctors they knew of, now there was pressure for all referrals to be within the hospital network. Not exactly putting patients first, were they?

This year, that hospital joined another hospital network. The hospitals are now separate, but connected. The new hospital network is bigger, though, and has more power. And the new network says that the phlebotomy lab is not cost effective. It’s not worth the money, even though it’s important for the care of the patients. How does that make sense? Isn’t the entire point of this building to provide care to patients? Apparently not.

My doctor had giving me a list of alternate places to get my blood drawn. Unfortunately, it was an additional two weeks before I was able to get to any of them. I have a car and am often mobile. Several years ago when I could barely leave the house more than two or three times each week, this would have cost me more. Some people don’t have cars, which will make many of these locations harder to access. For some, it will be impossible. What will happen to them? What will happen to all of us, as hospitals continue to make decisions that favor the bottom line over patients?

Because that wasn’t the only bad news. My practitioner also told me that the hospital is considering moving the entire staff of that building. The new location would be nearby, but due to traffic, it would be much harder for me to access. Due to less public transportation access, it would be impossible for others to access. The reason they are considering this is because it’s cheaper. The office has occupied this building for many years. However, it is now considered prime real estate, and the hospital would rather get more money by moving everyone. Maybe this will work out ok, but I do wonder what will happen to the many patients who rely on these excellent doctors and who can not get to the new place. Have they been taken into consideration at all?

This situation isn’t unique to this one office. We are seeing it more and more. There are cutbacks in all kinds of areas. What will be next? And what kind of impact will it have?

Have you experienced medical facilities prioritizing money over patients? Please share it in the comments.


%d bloggers like this: