I haven’t really been wanting to write about this because I haven’t been wanting to deal with emotional reactions that health problems tend to bring up.
Basically, I’m in the middle of a pain crisis. This was brought on by a combination of the neck problems that I went to the ER for last July (so far they’ve found that I have a straight neck and there’s probably something pressing on a nerve somewhere some of the time), the pre-existing trigeminal neuralgia (at least that’s what they’ve started calling it at the pain clinic, it was previously considered part of my migraines), the actual migraines, and (previously) the pain from the tooth extraction, all feeding off each other and amplifying.
I’ve also had several family members with serious health problems recently, and two conference presentations, one of which was a complete surprise to me, and the other of which the schedule for was changed at the last minute (and at a conference where in addition to some really good ideas, there were some really offensive ideas being batted around that were also stressful). And other health problems they have found in me are aspirated reflux probably being the cause of my asthma getting so bad this year, and a fungal infection in my esophagus. I also had to go in for a thyroid biopsy because of something they found on the scan of my neck (and the biopsy itself contributed to the pain mess that’s been going on around here), which is probably nothing serious at all but they wanted to be sure.
I’ve had one emergency room trip (in which they said I shouldn’t be waiting so long to get into the pain clinic, after a combination of pretty strong painkillers didn’t do a whole lot), a lot of days where I could barely get out of bed, and some days where I couldn’t get out of bed, and couldn’t even communicate with people who are paid to support me, let alone anyone else.
I had my first nerve block yesterday at the pain clinic, using a combination of local anesthetic and steroid injected into the lower two branches of the trigeminal nerve. This temporarily took away pain that I’ve had for a minimum of seven years, although it didn’t take away the pain that was from the upper branch (they said the steroids might get into that nerve eventually). When sensation came back, it became really obvious that two of the biggest sources of pain for me are moving my eyes and breathing (specifically the air rushing into the right side of my nose or mouth), neither of which can exactly be stopped. It also became obvious that the entire right side of my face is in pain, but I had only previously noted the parts where the pain is worse to be in pain, because I’d gotten so used to the background of pain that I thought it was what that side of my face was supposed to feel like. It also felt like one wall slamming down between me and my body and another one between me and the rest of the world, because the pain is far more intense to feel after it’s been gone, than to get used to over a period of years. It’s really weird when having a part of your body numbed means you feel more like it’s part of your body than when it’s not numbed. I have to wait a couple weeks and then go back to the pain clinic and tell them whether the steroids have kicked in and offered any pain relief in the meantime. If they haven’t, or haven’t effectively enough, they’ll move on to some sort of Plan B that I haven’t entirely been filled in on yet.
Meanwhile, my brain has been usually (with a few breaks, or what’d be considered by me to be breaks anyway) taken up either entirely by pain or by some combination of pain and pain medication (although the medication is barely touching the worst of the pain). I’ve actually gotten some ideas of things to write about, but so far not had the chance to actually write about them. Even my doctor has been a bit alarmed because he never hears me complain about pain (he usually gets someone else dragging me in and insisting I’m in pain while I try to minimize the situation), but I was actually crying last time I talked to him.
A note to people who’ve written to me asking for things:
If I’m not doing these things, it’s not because I want to blow you off. If you imagine me sitting around having fun, the likelihood is that I’m actually lying in bed doing little to nothing at all (for those of you who might imagine that to be fun, it’s actually really boring after awhile, not to mention painful). There are many projects that I would be very excited to work on, some of which I had already started (especially during the first part of this mess where I was still thinking I could just “push through” the pain if I kept myself distracted enough), that I have been unable to work on. One of those, I was supposed to email about twenty people, all with pretty close to identical emails, and I only managed to email two, each time during a break from pain that only lasted about long enough to email them.
It’s not about me having a problem with you. If you’re one of the few I’ve managed to attempt to make some kind of compromise with, or responded to at all, you’re one of the luckier ones. If I have tried to compromise, please don’t push me further, even what I’m doing is at the moment likely pushing myself at least to my limits if not past. There’ve also been situations where a couple people wrote to me about something we were all supposed to do together, and if only one of you got a response and others didn’t, it’s because I could only write that one response. There’ve also been times where I’ve had to save any energy I had to communicate something vital to people who work for me, and have not been able to respond to people at all. If I’m responding sporadically, it’s because the pattern the combination of pain and pain treatment going on is making is sporadic itself.
At the same time, please don’t throw too much sympathy or horror or other extreme emotions at me, I won’t know what to do with it (it’s one of those emotional responses that seems appropriate to the other person but completely baffles and somewhat alarms me), and it’s the main thing that’s kept me from making a public blog entry to this effect even when able to. But then I figured people should probably know why I’ve got this enormous backlog of stuff I’m not doing, whether it’s sending you something or doing something with you or trying to problem-solve about a horrible system your friend or relative is stuck in or provide you information or work with you on a project or a project I had planned or updating my blog or anything else. Normally I deal with a lot of pain and do a lot of stuff anyway, but this isn’t my normal level of pain, it’s what happens when several kinds of pain create a nasty feedback loop. When the pain is often getting so bad I can’t tell if I’ve blacked out or not when it flares up, I really don’t think I can be sitting around holding conversations, even online ones.