AcupunctureI like the acupuncturist I saw at Berkeley Community Acupuncture on Tuesday & saw her again to day. (Her name is Elena.) The whole clinic is really great, very relaxed and casual. Everyone is treated in a living room-style room filled with 5 recliners & soft, non-annoying music. You just lie back on a recliner & the acupuncturist periodically comes into the room to move silently around & apply needles to any new person who has come in, check on other people, etc. It's surprisingly pleasant to hang out with other people in this setting.
I think the acupuncture has been helping with the muscle contraction element of the headaches, but the occipital neuralgia crap along the left side of my head doesn't seem to be helped much at all. It seems to have helped with some of the scalp sensitivity, but only in the front part of my head. Today's treatment seems to have actually worsened the pain in my scalp along the back of my head. I figure you can't always predict how any particular treatment is going to affect any specific individual's nerves, so I'm not blaming them, but I'm definitely going to give my scalp a while to recover before going back.
Physical TherapyI also met my new physical therapist—Meena—on Tuesday & I like her a lot, too. She gave me a few exercises—stating that she prefers not to overwhelm people with too much all at once, because it tends to discourage people from doing any at all—and she seems to have wisely chosen a few particularly effective things for me to do. Interesting, since they aren't the same exact exercises I was given previously, but then my previous PT was clouded by the codeine effects, so it's not surprising that the treatment would be a little different now. Better suited to the actual root cause of the headaches, I expect.
Pain DocI saw the pain doc on Wednesday, and he tried to tell me—once again—that I don't have occipital neuralgia because blah-blah-blah, and I interrupted to say, "My neurologist disagrees." To his credit, Pain Doc gracefully admitted that pain specialists and neurologists receive different training, and that in his practice they most likely only see the worst cases. Without losing face, he admitted that the neurologist would know better than he what my true diagnosis is, and so he accepted it.
We talked about my current withdrawal symptom situation—continuing slight body temp regulation issues, continuing occasional body aches, continuing slight digestive issues, continuing increased anxiety—and he advised strongly against reducing the Butrans dosage as we'd been tentatively planning. He wants me to keep the current dosage for another month & then check my situation again then.
I've been feeling like my body is not "getting with the program" & is taking a ridiculously long time to get over this whole codeine dependency—much longer than is normal. But Shannon pointed out that there's no sense in looking at what other people's bodies do: it only matters what my body is doing. And my body needs more time. That seemed very wise to me, so I'm trying not to see this whole Butrans tapering process as some kind of race. It sounds ridiculous, but there's some part of my brain that feels like my body isn't "doing it right." I'm trying to be more compassionate than that.
Current Headaches OverviewI'm not sure if it's the acupuncture that's helping with the muscle contraction headache, or if it's the PT, or if it's some combination of the two, but something seems to be helping. The all-over exploding-brain headaches have improved—not vanished, but improved—but the debilitating occipital neuralgia headaches don't seem affected at all. Well, I would hope that reducing the muscle constriction would eventually help with the pinched nerve, which would—one presumes—eventually help with the occipital neuralgia, which would—one presumes—eventually help with the sharp headaches & sensitive scalp. Maybe the frequent nausea, too, since that seems to correspond with the viciousness of the headaches.
Prognosis ThoughtsMy therapist asked me about the bone spur in my neck & whether there's anything that can be done about it, so I did some research & learned that no, in fact, there isn't anything that can be done about it except spinal surgery, which obviously is not something we'd want to jump into. And the arthritis is only going to worsen as I age, resulting—one presumes—in a growing bone spur, resulting—one presumes—in an increasingly narrow channel through which the occipital nerves can travel, resulting—one presumes—in increased pinching of those nerves. But perhaps not. Something to ask the neurologist about when I next see him, though that won't be until December 17, since he wants to give some time to see how the PT can help. I'd like to know more about what he thinks about my prognosis.
In the meantime, I've been doing some research on what stuff can help with pain from pinched nerves in the neck, and I'm going to try a different kind of pillow to go along with the PT and acupuncture. I'm tired of hurting every single day.
Mild Mom AnnoyanceMy mom sends out "family letters" every few months: a few dense pages of single-spaced news about the minutiae of her life, which she sends out to a few family members, including me. I think I mentioned this here before, when I was surprised that my kidney disease diagnosis had apparently not been sufficiently important in her life to make it into the "family letter." Well, I haven't been able to make it through these letters for quite some time, because they are so dense and I'm still having trouble with reading. My mom has repeatedly—and seemingly casually—commented that she was sending them to me just because she figured I might be interested & that I should let her know if I didn't want to get them. Well, I recently emailed & told her that she probably should just leave me off the mailing list, because I still have a lot of trouble with reading. I suggested that she just tell me the important stuff in email.
She responded with a huffy "Why not have Shannon read them to you? I forget what I tell what to...that is why I do the letter. If you don't care to know, I will won't send to you anymore."
I have been writing this online journal here at LJ for more than a decade, and my mom has known this the entire time, but she only stopped by to look at it a few times over the course of those years. I knew that, so I just filled her in on the big stuff—or just the stuff I thought she would find particularly interesting—in email. I figured that we have an individual relationship separate from others, and so I corresponded with her, specifically.
She never bothered to tell me when her best friend died. She never bothered to tell me when her father died. She doesn't seem interested in actually communicating much with me at all except in an impersonal "family letter."
I've been feeling huffy about this, in my turn, but have been refraining from pointing out the hypocrisy. I'm supposed to read about every detail of her life, despite the fact that she feels no interest or obligation to do the same in return. Her life is supposed to be more important than mine, which is nothing new, of course, but I've been biting my tongue & just not responding to the email. I don't want to engage. It's difficult when I feel I've been judged unfairly & want to defend myself, but I know that arguing wouldn't accomplish anything. But I've been turning it all over in my head now and then. I figure this whole "not engaging" thing will take a while. "Fake it 'til you make it," right? Right now I can practice the behavior of not reacting, and maybe eventually I won't react emotionally, either.
Getting and Giving SupportOther stuff has been going on. I've been going to support groups at CWC a couple times a week & that's feeling really helpful. I spoke carelessly in a group today and appear to have seriously hurt the feelings of one of the other women there, and that was a bit distressing. She had been giving an opinion about something & I said, "I actually disagree with you about that" & then gave my own opinion, but I guess I sounded dismissive & like I was saying that she was wrong. My head was just hurting a lot & one of the other people in the group was feeling particularly vulnerable & I was trying to reassure that person & wasn't thinking about this other person (the one whose feelings got hurt) & so I guess I just spoke a bit less diplomatically than I usually would. I felt I was just presenting a different perspective, but I guess that didn't come across as well as I thought it did. She definitely felt that I had slammed her. I must admit that I did think that the things she was saying—while true to some extent—might at that particular moment be actively harmful to the very vulnerable person to whom she was speaking, but I didn't think I had let that attitude seep into my words. I guess maybe it showed anyway.
Still, I feel that the issue was maybe 20% me expressing myself poorly & 80% the other person taking a difference of opinion way too personally, but it was frustrating because I know I'm usually a lot better at communicating in those emotionally loaded kinds of situations & don't usually say stuff that hurts people. It was just another reminder that I'm not formulating my thoughts and expressing myself at a level that is normal for me. This woman and I worked things out, I think, but she was really sobbing a lot & I hate hurting other people, so I left CWC feeling rather disconcerted & unhappy. I'm better now, feeling fairly certain that the problem was mostly hers, but I still wish I'd been a bit less callous in my wording. And I hope my own feedback helped the person who was feeling so vulnerable and frightened.
I've also done some research into support groups for folks with chronic pain and/or occipital neuralgia, and didn't find any "real life" groups, but found some on Facebook. And I've been thinking about creating a separate journal just for my health stuff, because I feel like it has completely taken over this journal & probably doesn't interest most people very much & buries the non-health-related stuff under a mountain of pain and illness. Also, I figure that I might be able to make some online friends who have similar health issues & they might not be interested to read about my mom or my biking adventures with Shannon or whatever.
Anyway, I'm very tired right now & am having trouble thinking. I don't know if the separate health-related journal makes sense or not. I'll think about it when my head doesn't hurt so much. Someday.