October 12th, 2014

me blue hair

(no subject)

Terrible, unrelenting headache for 2 days solid. 8 out of 10 with no let-up except when I'm asleep. Plus all the continuing GI symptoms. The headache has been bad enough that I've been sometimes having trouble thinking much at all. Yesterday I completely forgot to go to my gum graft post-op appointment. They called me & said, "You were supposed to be here 15 minutes ago." I was horrified. It's the only thing I really remember about yesterday until dinner with Shannon. I spent most of the day in a headache haze.

I've been feeling strangely glad that my mom told me to stop telling her about my health problems, because at least now I know in advance not to seek any sympathy there. My expectations have been redefined, and it's resulting in less emotional pain. Or, at least, less acute disappointment; it's just a different kind of emotional pain, I suppose. A pain that is more of a chronic sadness.

I haven't done any art in weeks; I just have so little physical, intellectual, and emotional energy. What I DO have goes into expressing to Shannon how much I love and appreciate him--spending time with him, talking with him, reading aloud, going out on mini-dates, etc.--and then housework with anything I have left over. As far as I'm concerned, my energy always goes into my relationship with Shannon first--I give him as much as I can--and everything else is optional. Well, except my own health and happiness, of course, which come even before Shannon's. But my happiness and his are more closely intertwined when I'm this ill, because we're both so busy taking care of me.

I've been enjoying my work on The Most Expensive Afghan Ever, though, and that's something I've been doing on my own. It's fun & creative, albeit in a comparatively passive, mindless sort of way. Sort of meditative. And Lisa came over today & we talked for an hour or two, until I started feeling so sick that I kicked her out.

Tomorrow is Berkeley's "Open Streets" festival again. Shannon and I are planning to attend to the extent that I'm able. Digestion keeps me close to home a lot of the time right now, but it'll be nice to see what they have planned this year.

girl in tree, hiding

Communication Disconnect

This week I got to thinking about something. The pain doc didn't seem to be taking me seriously when I told him about my withdrawal symptoms last week—not until he actual observed some of them for himself—and I'm pretty sure it's because I don't behave the way most people seem to expect when I'm miserable. Even when I've been at my worst—when I was suicidal or when I'm in a lot of physical pain—I'm usually able to see the humor in the situation, and I sort of accept things as they come. I'm forthright and honest with my doctors about how I'm feeling, both physically and emotionally, but I don't broadcast an air of misery.

When I told the pain doc that I was going through withdrawal symptoms, he scoffed & said, "If you were going through withdrawal, you wouldn't be wanting to talk to me right now. You would be hating me for doing this to you." I told him flat-out that I thought this was ridiculous. I went to him and told him I wanted to do this (get off codeine) and asked for his help. Why would I be angry with him for doing what I asked? Even when my withdrawal was at its very worst—when I was pouring sweat and shaking and disoriented and panicking—I only called his office to find out if this was cause for alarm (i.e., worthy of a late-night emergency room visit) and what I could do (if anything) to mitigate the symptoms.

So apparently this doctor expected me to be expressing more negative emotions if I was in the physical state I described; he apparently saw a disconnect between my reported experience and my outward expression of it. I wondered briefly whether I minimize my distress, but I don't think I do. I just see no reason—when I'm miserable—to make myself even more miserable by wallowing in it. Sometimes I can't help it, but in general I tend to take a fairly philosophical approach to pain and illness. I see them as challenges to get through, but not as reasons to give up or get pissed off.

(I have been pissed off at doctors before, of course. I am still pissed off at The Evil Meds Doc, especially as so many of my current problems are direct results of his irresponsible treatment of me. If I did not have kidney disease as a result of his malpractice, I would be able to take a wide variety of different kinds of pain relievers and would not have had to turn to codeine. I therefore would not be going through all this withdrawal crap, and I also would not be currently helpless in the face of the current headaches. Because of the kidney disease, all I can take is Tylenol, and Tylenol has never worked on any of my headaches. Naproxen/Aleve always helped, but I can't take it anymore because it's processed by the kidneys and therefore dangerous to me. But I don't get pissed at doctors just because I'm having a hard time.)

Now, I'm not saying that I'm particularly stoic. I have been known to cry in the presence of doctors when things are particularly hard for me, especially if I'm feeling helpless in the face of considerable badness (such as when the kidney disease was discovered). But even in hard times I'm usually friendly and probably even what most people would interpret as cheerful. During times of deep depression and/or extreme anxiety, I've had people tell me I seem to be doing great, even when I've been up-front about how I'm feeling.

So this is a weird situation. It takes me back to my childhood & my mom telling me to exaggerate my symptoms when talking to doctors. I don't think this is why I "behave" as if I'm not downtrodden; it isn't an act. I try to be very honest and clear about what's going on with me, but apparently my manner throws people off. So Shannon suggested that I try to tone down my good attitude when I talk to doctors, but that feels really weird to me. I don't like trying to pretend to think/feel/be different than I do/am, and I find it really hard to remember. But my instinctive behavior may be leading doctors to interpret my words incorrectly. It looks like perhaps I'm not communicating effectively, even if I express myself well in words.

It's something to ponder.

At the moment, however, I'm going to try to get some sleep. I haven't slept at all yet tonight, because headache and nausea have kept me awake, despite my exhaustion. Maybe I can get 2 or 3 hours of sleep, anyway.

Edited to Add: I've been having a lot more "deep thoughts" lately, because a certain intellectual fog has been lifted with the disappearance of the codeine. The headaches cloud my thinking, but it's in a different way. The codeine made me stupid; the headaches just make it hard for me to focus.