What did you do today?

September 30, 2014

To the uninitiated, it sounds like such a simple question: “What did you do today?” And really, it is simple. It’s the answer that’s complicated.

Some days the answer is complicated because the day was spent dealing with symptoms, but other days the complication comes from a reality that is so different from that of my peers. That’s how it was one day last week.

I’ve started dating someone, and I’m trying a new approach: honesty. Ok, filtered honesty, but I’m trying not to filter too much. The filter is limited to certain symptoms. There’s no need to mention pooping my pants at this stage of the relationship, for example. I’m trying to share everything else. But that gets complicated.

I asked “What did you do yesterday?” in an email this morning and he responded by telling me about getting together with some friends after work. Yeah, that’s what my answers used to look like, too. Not now.

When he asked me last week, I answered honestly: I bought groceries, did some medical research, pulled together paperwork for my food stamps application, and washed a bunch of dishes. I did a few other niggly things, but those were the main ones. Groceries and dishes are familiar to most of us, but medical research and food stamps? Um, not so much. He was surprised when I mentioned the food stamp paperwork (actually, it’s called SNAP now, but whatever.) But when he thought about it, of course he realized that if I don’t have much income coming in, then of course I qualify for and need food stamps. As for the medical research, he has no idea how much time I spend on that. I tried to explain a little bit. He loves that I’ve taken matters into my own hands by doing my own research. He just doesn’t understand how hard it is. He doesn’t know about brain fog. I’ve tried to explain it, but he hasn’t witnessed it (it hasn’t been too bad since we started dating, and I usually hide it well.) Besides, you can’t really understand brain fog unless you experience it yourself. He doesn’t see how exhausting reading can be. He doesn’t know that I don’t just read an occasionally newspaper article – I follow blogs and Facebook groups, I read news articles and web sites. I read entire books from the library. I spend so many hours on this, it would shock him. He’ll learn in time, I’m sure.

And that was just that one day. He hasn’t asked about today yet, but it’s a similar mix: I cooked (ok, I threw ingredients in the crockpot, but it counts, right?) I rescheduled two doctor appointments, I’m writing on this blog that he doesn’t know about yet, I prepared paperwork for my fuel assistance meeting tomorrow, I prepared paperwork for my medical appointment tomorrow, I looked up the best routes to get between the two appointments (I can’t remember the last time I had two appointments in one day!), I pulled my winter clothes out of the closet and packed away my summer clothes, and I rested. I rested a lot. Because all of that was exhausting! I still have so much more to do, but I know it won’t get done. If I can muster the energy, I’ll do my physical therapy exercises tonight. I have done them in a while – not since before my grandfather died. I need to try. Maybe in a few days I’ll find the energy to finish going through my clothes. Right now, my suitcase and duffle bags are are open on my bedroom floor with clothes spilling out of them. My drawers are too full. I have sweaters on top of the dresser because I haven’t found a place to keep them yet. I have pants on the bed that I need to try on. What I don’t have is the energy to deal with any of that.

And yesterday? Yesterday I straightened up my apartment just a bit, did a bunch of dishes, went to a doctor appointment, bought a new winter coat (yay!), and then came home and collapsed in exhaustion. Somewhere in there I also managed to write a blog post about the suckiness of this month and probably do a couple of other things that I have since forgotten about as those memories have been lost in the fogginess of my brain.

And those are just three sample days. Sure, some days I deal with less health-related stuff. But other days I deal with so much more. Friends are surprised when I mention yet another doctor appointment, picking up more meds, or any of the other random acts that I no longer consider unusual. Actually, what surprises them is not that I do these things – after all, they know about my health problems – but my nonchalance. They can’t understand my attitude when I mention getting bloodwork in the same way that someone else would mention picking up milk at the store. But that’s just it. For me, they are the same. Medical care is more than just routine. It’s like breathing.

No, wait, I was wrong. They are different.

I can’t drink milk.

Now it’s your turn. What did you do today? Or on some other typical day? And how to friends react when you mention it?

September kicked my ass

September 29, 2014

Here’s the thing about chronic illness: it’s unpredictable.

And here’s the thing about life: it too is unpredictable.

And sometimes the unpredictable chronic illness shit coincides with the unpredictable life shit.

That’s what happened to me. That’s why this blog has been so quiet lately. And that’s why September kicked my ass.

It started with my typical CI issues flaring up. Then I had a surprise when I had an unusually large amount of blood drawn and I got light-headed and started to black out. Bad pain made everything a bit worse. The fatigue was really horrible. A sleep study stressed me out. I had to chase doctors more than usual. I had insurance-related financial worries. I had a looming deadline to send in the paperwork for my SNAP (formerly food stamps) application. And then, just when I was completely overwhelmed, a loved one died. I was devastated. I was stressed out. I was running around trying to be with family, attend the funeral, sit shiva, and help clear out his apartment. As you can imagine, my stress, fatigue, pain, and nausea all got even worse.

Now, September wasn’t all bad. I started dating someone and things are going really well. I’m processing my grief. The sleep study went well. The symptoms have been improving. Still, it wasn’t my favorite time. I mean, I wasn’t even blogging regularly! That tells you just how badly the month had gone!

October is just a couple days away, and I’m hopeful that it will be a better month. I’m starting a new sleep apnea treatment, I’ll continue dating the guy, I hope to find time to cook, and the transition to autumn that was probably responsible for a lot of my September symptoms will be complete. It won’t be perfect, but surly it must be better?

The thing about chronic illness is that, like life, there are ups and there are downs. September gave me more than my share of downs. Now I’m really hoping for some ups! So screw you, September! I’m moving on, to bigger and better things!

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?!

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