The skill I wish I didn’t need: removing bloodstains

October 15, 2016

I remember the night, around 3am, when my mom taught me how to remove bloodstains.

I got a lot of nosebleeds as a kid. So did most of our family. Luckily, we grow out of them as we get older, and I only get a half dozen or so every year now. Yeah, only.

Some nosebleeds came during the day, and some at night. Usually I woke up fast, since it affected my breathing, but this time I didn’t, and blood got all over my pillowcase. A light sleeper, my mom heard the running water down the hall, and came to investigate. She found me trying to wash the blood out. Instead of doing it for me like she had in the past, she decided it was time I learned how to do it myself, so she showed me what to do. Then she put a clean pillowcase on my pillow and I went back to sleep.

Fun times.

These days, I sometimes still use that skill, but these past two days I’ve used it far too much.

Thanks to PCOS (polycycstic ovary syndrome) my period is always an unpredictable adventure. Sometimes I don’t get it for a year. Then I get it too frequently. Right now I only get it with the help of hormones, but the hormones make me very sick. So the plan my doctor and I created is to only take them for 1 week every three months. That way I’ll bleed (my endometrial lining was building up too much, so unfortunately I can’t just avoid it altogether) but I won’t have to get sick from the hormones all month, every month.

I timed it carefully. I need to allow up to 2 weeks of feeling crappy – 1 week for the hormones and 1 week for my period. I waited until after the pooch left, then took them immediately, because I need my period to be over before I go on a short but much-anticipated trip next weekend with my girlfriends (our first girls’ weekend together!)

It was a good move, because I’m miserable. By the last days of taking the hormones I was fatigued, nauseated, and just feeling lousy, plus moody. Then after 2 days off the hormones, during which the crappy feelings continued, I got my period. And it was heavy. Very heavy. And it still is.

And that’s why in just the past day and a half I have washed bloodstains out of 3 pairs of underwear, 1 pair of pants, and 1 bedsheet. And that’s why it’s noon and I am sitting in my pajamas with no plans or desire to leave the house today. I don’t even want to deal with showering.

It’s a gorgeous day out. The New England fall colors are lovely. Normally I would be outside as much possible. But I’m bloody and crampy and just feeling blah. I’m grumpy  and irritable. I’ve had to wake up in the middle of the night two nights in a row to deal with pads full of blood and various bloodstains. And I curse the biology that makes this happen.

But in a few days this will be over, and I will have 3 blissful months with no period, and only removing my more mundane bloodstains – the ones from random scrapes and cuts, mostly from my own clumsiness.

Won’t that be nice?

Is it just me? Do you have unfortunate bloodstain-removing skills also? Please share in the comments!

Many possible causes, no answers

August 20, 2016

When someone who’s generally healthy feels bad, they can usually tell you why: they drank too much last night, they haven’t been sleeping enough, they’re under a lot of stress, they’re getting sick.

When you have a chronic illness, it isn’t always so clear.

I was doing unusually well over the last few weeks. I wasn’t feeling as good as I do in the fall and winter, but as far as summer goes, my pain and fatigue and other symptoms weren’t too bad.

Then I started feeling unusually bad. I was more fatigued. I was depressed. I was in more pain. The symptoms ebbed and flowed but were always around. What happened?

I weighed the possibilities:

  • Maybe it’s the weather. But I’ve been staying in air conditioning. And it’s hot and humid, but not nearly as bad as it was last week. There’s no reason I should feel so much worse now.
  • Maybe I’m getting my period. Thanks to my PCOS it’s entirely unpredictable and rare. That was an option for a couple days, but I didn’t get it (and if I was going to, I would have within 2 days of the start of the symptoms.)
  • Maybe I got glutened. After all, it started just a couple hours after lunch at a restaurant. The symptoms weren’t as bad as a typical gluten reaction, but maybe it was the tiniest amount of contamination. This seemed possible at first, but that was 4 days ago. I would be feeling better by now.
  • Maybe it’s some new, unknown thing. That happens sometimes. Unfortunately, there’s no way to know.
  • Maybe I’m getting sick. That would make sense. My body could be working extra hard to fight off some tiny little bug that most people wouldn’t even notice.

And of course, I don’t have an answer. Except for a quick trip to pick up a prescription and some groceries yesterday, I haven’t left the house in 4 days. These days, that’s a lot. I’ve been going out most days, even if it’s only briefly, and I’m rarely home for more than 2 or 3 days at a time.

The weird part is, I have no desire to go out or do anything. I know there’s stuff around the house I need to do, and I want to do it, but I just can’t bring myself to even get started. I’m not depressed, I just don’t have any spark. I’m too tired. I’ve been sleeping well enough, and I feel ok when I wake up, but my energy just remains flat. I think I’m going ok and I try to walk around, and my foot hurts too much. Or my knee hurts. Or something else. My stomach bothers me occasionally, not in any ways I haven’t felt before, but this time there aren’t any reasonable triggers. The pain feels like it’s coming from the humidity in the air, but what about the fatigue and stomach issues? Maybe those are too?

The frustrating part is that I don’t know, I can’t know. I won’t have any answers. Even when I eventually feel better, I probably won’t know why this happened. Just like when I have good days, I don’t know what causes them. It’s a big, frustrating mystery. And it affects my entire life.

It’s about more than just pee

June 5, 2016

There’s political turmoil in the U.S. right now around bathroom use. Yes, you read that right. Transgender folks want to use the bathroom that corresponds with their gender identity and conservatives want them to use the bathroom that corresponds with the gender on their birth certificate. While I have some very definite opinions on this issue, there’s one aspect that strikes me as being more relevant for those who have certain chronic illnesses and other medical issues. Or who just poop when they’re not at home.

You see, the argument from transgender folks and their allies is that this is about a simple right: the right to pee. And it is. But it’s also more than that.

I see a lot of these memes, videos, and arguments. I share a lot of them on social media, too. After all, I fully support everyone’s right to pee in a comfortable, safe space. But the thing is, isn’t it about more than just pee? And I’m not just talking about having a private place to pick a wedgie, fix your hair and makeup, or take off those uncomfortable stockings.

For me, public bathrooms, and even private ones, were about more than just peeing. I had around 20 years of undiagnosed Celiac Disease and other food intolerances, so you can imagine what bathroom use was like for me.

I have an unusually strong bladder. I can often go for 4, 6, even 8 hours without peeing. But when I got *that* feeling, there was no choice.

There was the time I was on the highway, stuck in traffic. I got *that* feeling. I knew it was bad. I looked at the stop-and-go traffic and I wondered if I would have to have diarrhea in the grass on the side of the highway. Thankfully, just in time, I got off the road, into a motel parking lot, and found my way to a bathroom. Thank goodness!

Then there was the time I was seeing a show on Broadway for the first time. I was so excited! Walking to the theater, I got *that* feeling. We rushed to the theater, thinking I could quickly use the bathroom, but the doors weren’t opened yet and there was a line to get in. I rushed to the hotel next door, but a guest card was needed to use the bathrooms. I asked at the desk, but they wouldn’t let me use a toilet. I went back to the theater. The doors were open and my mother was almost to the front of the line. I was desperate. As soon as I was through the door I ran to the bathroom. The line for the ladies room snaked down the hall. I ran to the front and asked if I could cut the line. A woman in front said yes immediately, and others followed her lead. I hate to think what would have happened if she’d said no. Maybe she saw the desperation on my face. Maybe she noticed that I was turning a bit white, or even green. Maybe she was just a compassionate person who always helped others. Whatever it was, I was grateful. I ran into the next open stall, and sat down as I felt what seemed like everything I’d eaten in a week leave my body. I was there for a long time. I eventually made it up to my seat, and was still feeling a bit ill. Before the show started, I got the feeling again. I ran back to the bathroom. It was close to curtain, so there was no line. I sat there alone, in the quiet, grateful for the toilet. I got back upstairs just as the opening number began, thankfully feeling much better.

I’ve had more incidents like this than I can count. There have been times I didn’t make it to a toilet in time. Thankfully, those were not in public places. But they could have easily been.

The point is, sometimes it’s about more than just peeing. I’m cisgender, so obviously this particular issue of which bathroom to use doesn’t affect me directly. (It does affect several friends, many acquaintances, and countless people I don’t know personally but who should obviously have the same rights as everyone else.) Still, I can’t help feeling a twinge at all of the talk about how “it’s just about peeing.” No it isn’t! It’s also about pooping! Don’t forget the pooping!

I want to shout it at the tv, at my computer screen, and at every person who says, “it’s just about peeing.” I get their angle. They want to eliminate the politically-motivated distractions being used to force the issue. But let’s not erase the very real problems that so many others are dealing with. It’s about pooping too!

There are certain things all humans do. I get that most people don’t want to discuss them all. But really, why can’t we talk about poop? If we can wipe a baby’s butt, clean out the cat’s litter, and pick up the dog’s poop from the street, surely we can recognize that trans+ folks will need to occasionally poop in public too. And when they do, they need to be able to do it in a safe place.

Because if I hadn’t had a safe place in that theater, it could have been a very messy experience. And no one should have to go through that.

So for all of you out there with IBD, IBS, Crohn’s, Celiac, or any other digestive issue, and for those who simply need to poop, I support you. Let’s win this thing! #itsaboutmorethanpee

How little pain should I expect?

May 5, 2016

So many doctors have made it clear: I shouldn’t expect to ever live a life without pain again. Ok, I’ve accepted that. But lately I’ve wondered: should I raise the bar for my own pain relief expectations?

I’ve been watching friends, acquaintances and strangers online dealing with their chronic pain. They complain about their pain, while still trying to live somewhat normal lives. They complain that they can no longer go jogging, work two jobs, carry heavy loads, or climb a lot of stairs. At first I’ve thought, “well of course you’re in pain, you shouldn’t expect to still be able to do that.” But then I thought, maybe they should. Maybe I should.

Obviously there are limitations. I’ll never be able to jog. Or work two jobs. Or for that matter, carry heavy loads or climb a lot of stairs, either. But maybe I should be able to do more than I’m doing now without feeling so much pain.

Some days it isn’t that bad. It’s nothing more than a nuisance. But then, I never try to do anything pain-inducing anymore. I don’t think about it. I simply haven’t done those things for so many years that it never crosses my mind to pick up something heavy, reach out my arm at a certain angle, or sit still for a long time. I shift my position constantly without realizing it, because over the years I learned it was necessary and I did it so often that it became automatic. But maybe I should be able to sit still for longer without feeling pain?

There aren’t a lot of options. I don’t like using prescription painkillers because they upset my stomach and it doesn’t seem worth it. I’ve tried NSAIDS, steroids, Plaquenil, Cymbalta…. it’s not like there are a lot of prescription options left. I try nonprescription things too, mostly through my naturopath.

But today I opened the door for a new possibility. I registered for medical marijuana. The United States is a funny place. I know a lot of you aren’t in the U.S. so basically, marijuana is illegal on a federal level, but some states have made it legal. That means that technically you could get in trouble for having it even in those states where it’s legal, but chances are the feds won’t bother you unless you’re a big player of some sort. On top of that, our current federal government has specifically said they’d lay off. It’ll be interesting to see what happens after the next election. But I digress….

As I was saying, I registered for medical marijuana today. I paid $200 to see a doctor, because none of the doctors who do this are covered under insurance. In a few weeks I should have my license from the state. Then I can buy medical marijuana, also called cannabis, but going to a dispensary (there are about a half dozen in the state so far.) I learned about the different strains. It’s possible to get strains of cannabis that help the pain, nausea, or other symptoms without getting you high. That’s what I’ll be aiming for.

But what’s my goal? When I walked in the door today thinking that I wanted to use it for the days when the pain is the worst. The thing is, the people I spoke to there acted like I’d be using it more often to help the pain more often. After all, hadn’t I just said that I was in pain all the time?

I have no intention of using it all the time, of course. But maybe I could use it more, so that instead of only using it on the worst days, I use it on all be the best days. Because shouldn’t my goal be to feel as little pain as possible?

Obviously I have to wait and see how I feel once I start. Maybe I’ll want to use a lot of it, maybe not. I’ve used it before, so I know that I’ll at least want to use it for nausea and digestive pain. It’s a miracle for that. But what about my joints? If it helps my joints, should I try it? And I learned today that it can help fatigue. That could be a life-changer!

I don’t expect this to cure me. I don’t expect to be pain-free. I don’t expect to walk 5 miles or lift a 5-year-old. But maybe taking a swim and cooking dinner the same day should be a reasonable thing to expect?

How do you set your expectations? Our abilities and symptoms are all so different, but we all have the same problem of figuring out what limitations are reasonable and what aren’t. How do you figure it out? Please comment and let me know!

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.

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….

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?

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