That sinking feeling

October 9, 2015

I’m sorry I haven’t written in a while. I’ve thought about it but, well, life’s been a bit rough lately. I’ll be writing about it one of these days, but I’m just not ready it. So instead, let’s talk about the phone call I just received 15 minutes ago.

***********

*ring*

Hello?

Hi, this is H from Dr. Z’s office. Do you have a moment to talk to Dr. Z?

Oh boy.

I’ve been Dr. Z’s patient for 10 years now, and this is the first time his office has ever called me for anything other than rescheduling an appointment. I immediately thought about the bloodwork I had done last week. Could it really be that bad? I’m seeing him in two weeks; what couldn’t wait?

I’d had a few things tested it. As it turns out, the concern was about my thyroid results. Unfortunately, he doesn’t test the Free T3, which I think is the most useful. Still, my TSH was very low. It could have been worse, but it was definitely too low. I’d raised the med during the spring and summer. I’ve read that some people need to make changes seasonally and I guess I’m one of those people. I’d completely forgotten about it, though, until a few minutes ago. Apparently, I need to lower the dose again.

So why did he call? Because at these levels, I’m at risk of being hyperthyroid, which means having an overactive thyroid. That would put me at risk of all sorts of things, include heart problems. You don’t want to mess with that shit! I’ve had low numbers before, but never this low. So he wanted to check on me.

Thankfully, I’ve done enough research to know what the symptoms of hyperthyroid are, and I’m not having those. Well ok, I’m having some anxiety, but it’s a very specific kind of anxiety that’s completely warranted, but I’ll get to that in a future post. I’m not jittery, my heart isn’t pounding, I’m not shaking. So I’m ok. For now. But I better start figuring out when to lower my thyroid dose.

There are people who never have to worry about that feeling. They never get medical tests. Or they get tested for relatively harmless things that are easily cured. They don’t know that sinking feeling of hearing that a doctor wants to talk to you about recent test results.

I’ve had that sinking feeling many times before. Sometimes it worked out ok (like when the biopsy showed I *didn’t* have breast cancer) and other times not so good. And those not-so-good memories are why I get the sinking feeling in the first place; because I know it really might be bad news.

Today I’m lucky. Today it’s not so bad. Today I know what symptoms to watch for and I know that I’ll be just find as long as I take the right actions.

I just hope I’m as lucky next time.


“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!


The reality of a spoonie’s mornings

September 22, 2015

I feel like my day has just started, but when my mom calls and says she’s just gotten home from her zumba class, I remember that for most people, the morning is half over. I chat online with a friend who’s sitting in her office 2 miles away, who has already dressed, gotten the kids off to school, managed her commute, and turned in a project to her boss, as I’m about to get breakfast. And the thing is, that’s ok!

I’ve never been a morning person. Now I know that I have a circadian rhythm shift, so of course I hated mornings. But I didn’t know that then. All I knew was the I wasn’t about to do anything more than I had to in the mornings. I loved turning off my alarm on weekends. When someone suggested I find time to work on a project or to exercise but doing it before work, I told them there was 0% chance of that happening, and I never understood how anyone could do things early in the morning.

Now that my sleep is a bit better, I can start to understand. My brain starts to function well within 1/2 hour of waking up. My body, though, is slower than ever.

As I have started to consider the possibility of earning a bit of an income, I’ve been reading books and blogs on solopreneurship. (Solopreneurship is entrepreneurship that’s done on your own. Often it’s just one person working from home or from a cafe with a laptop.) Many of them suggest being super productive by waking up an hour earlier than usual and using that extra time to get more work done. Doesn’t that sound nice? Gee, why don’t I just do that? Oh, right, because my body doesn’t work the way it should. I think it’s great advice…. for other people.

My mornings typically go something like this:

  • Wake up 7:30-8am, sometimes with the alarm and sometimes without it.
  • Read for 1-1.5 hours.
  • Take pills.
  • Get out of bed. Head to living room. Sit at computer.
  • Check Facebook for a while.
  • When thyroid pills have finished dissolving under my tongue and I have enough energy, get up for breakfast. This is usually around 10am.
  • Return to computer. Continue on Facebook and other sites (and maybe some solitaire) while eating breakfast, with the blue light pointed at me.
  • Around 11am-1pm finally get up, get dressed, brush teeth, and try to do 1 or 2 productive things like buy groceries, wash clothes, or straighten up the living room.

This might not sound like much of a morning to most people, but it’s what I can manage. And that’s ok! Sometimes my brain wants to do more. Sometimes my body has the urge to go out and enjoy the lovely weather. But it’s rare the two line up.

One day I’d like to get an earlier start to my days. I’d love to be up and doing things by 10am. That would be amazing! The reality is that it might never happen, so I have had to accept that.

What are your mornings like? Whatever they are, they’re ok! Because you’re doing the best you can, and that’s all you can ask of yourself.


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?