Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.


Wishing my health insurance covered the other things that help the pain

September 16, 2014

What my doctors say will help me (and I agree): massage, acupuncture, medical marijuana, physical therapy.

What my health insurance covers: opioids and other painkillers, physical therapy.

Does anyone else see a problem here?

I was thinking about this today during my massage. Technically, I can’t really afford it, but I’ve been trying to get at least two a year, using birthday and Chanukah money from my parents. I should put that money towards other things, like rent, but it just helps the pain so much!

My doctor wants me to get a massage at least once a month. My physical therapist wants me to get massages even more often than that. They each brought up the subject, not me. I never suggested it. But my insurance doesn’t cover it. So I pay $70 for an hour-long therapeutic massage, and I feel grateful that I can get that “cheap” rate. The massage therapist comes to my physical therapist’s office a few times a week and books up far in advance. She actually just added more hours to accommodate the growing demand. Yes, she plays the soft music and dims the lights. But she also keeps a detailed chart, applies the hard pressure I like, and manages to work out some of my always-present knots. She’s wonderful.

During today’s massage I thought about how frustrating it is that my insurance doesn’t pay for something that helps my pain so much. And then I dreamed about winning the lottery and hiring this woman to come to my home to give me a massage every week – oh, what heaven that would be! But back in the real world it just doesn’t work that way. And I know I’m incredibly fortunate to be able to get any massages at all. So many people can’t.

Still, how nice would it be if my so-called “health insurance” covered things that actually improved my health and my quality of life?!


What’s beyond fatigue?

September 12, 2014

Regular readers might have noticed that I haven’t been around much the last few weeks. It’s pretty obvious from the “Posts by Date” in the column to the right, anyway.9-12-2014 4-32-39 PM

Sometimes I miss writing because I’m busy doing fun things. Sometimes it’s because I don’t have anything in particular that I want to write about. But far too often, it’s because I just don’t feel up to writing.

I’ve wanted to write several times this week. But those topics have to wait because I’m just too tired to do anything productive these days. Now it’s 4:38pm and I just shut off the tv after watching for several hours. I feel well enough to sit at my desk and type these words. But I don’t know how long it will last.

And I struggle to explain this to friends who don’t have chronic illnesses because I don’t know how to describe it. I’ve said it before and I’ll say it again: we don’t have the vocabulary we need to describe these feelings. Sometimes I don’t know how to explain different kinds of pain or different kinds of nausea. This time I don’t know how to explain this feel of being so exhausted that just having a conversation with someone is tiring.

I canceled a date tonight. He was very sweet about it. He offered to bring takeout and a movie to my place so I wouldn’t have to do anything. But he doesn’t understand – we’ve only been out a few times, so I’d feel the need to talk to him, and talking would just take too much effort. How do you explain that to someone who’s never felt that kind of exhaustion? How do you explain the feeling that picking up a remote control is exhausting? How do you explain that reading takes too much energy, because even if someone else holds up the book, you just don’t have the energy left to think?

I felt this way in the past, but when things improved, I really hoped I’d never feel this way again. No such luck. Now, as I’ve felt the fatigue getting worse and worse over the the past few weeks, I’m left to wonder: what’s beyond this level of fatigue? What happens if I continue to feel worse? Somehow, I think I don’t want to know.


When I can’t trust my feelings

September 8, 2014

I’ve noticed a pattern, and I don’t like it.

It starts out when I’m in a lot of pain or extra tired or unusually weak or suffering from some other symptom in the extreme. Sometimes I’m upset or stressed out, sometimes I’m not emotional at all. After all, I’ve been dealing with these symptoms for a long time. Sometimes I’m fairly zen about it. Sometimes not. The pattern plays out either way.

The details vary, but something or other upsets me: a friend’s comment, a lover’s actions, a parent’s advice…. something. I respond by explaining why they upset me. I think I’m being reasonable. I always address issues head-on. Only instead of the usual productive conversation, they’re hurt. They’re upset. They can’t understand why I’m so sad/angry/hurt. Their reaction is just wrong! We talk. I feel bad and I don’t know why. I apologize. And eventually I have to admit that I’m not seeing things clearly.

This happened again today. It happened 2 days ago, also. It happened several months ago. It’s happened sporadically over the years. And I don’t know how to stop it. Because I don’t know that I’m not seeing things clearly until after I say something that someone else finds hurtful or offensive. I don’t realize it until it’s too late.

Until now, the people I care about have been very forgiving. They seem to understand that sometimes I’m just not myself. They know that whatever it is, it’s not intentional. They know that when I feel better, I return to myself. They know that even when I seem irrational, I care about them. But I wonder, will something happen some day when they won’t forgive me? Will it go too far?

This has happened twice in my current flare, so I know how to be extra careful. But what happens during the next flare? Or the one after that? Who will I hurt next? Who will I accuse of doing something terrible, when they were only trying to help me? I know it will happen, sooner or later. I just wish I knew how to stop it.