Gnarly

Two gnarly days...gnarly in the sense that they left me feeling all twisted up on the inside, and worn away on the outside, like a weather-beaten tree. Snow, ice, wind, and mountain pine beetles. That's me.

Yesterday I spent the afternoon at the ophthalmologist's office having my 6-month follow-up. First I had a mERG -- multifocal ERG, to the uninitiated; an ERG is an electroretinogram. For an ERG, a large contact lens hooked up to electrodes is placed in your eye and bright lights are flashed into the eye in several patterns to detect amplitudes of electrical responses in different parts of your retina. The mERG focuses on the central part of the retina -- important for me since that's the only part of my retina that's still functioning. The test showed that my left eye had gotten a lot worse since my last test. The readout from my left eyet now almost exactly matches my right eye -- in fact, when I saw the image, I assumed the doctor had pulled up the wrong test result. I have no electrical response anywhere except in my immediate central vision (if I'm reading the report correctly, a diameter of about 20 degrees). As I said to the doctor, it might explain why I have been walking into things more lately -- the dimmer switch has gotten turned down a few notches. That on top of having no peripheral vision = more collisions with inanimate objects.

It wasn't really a surprise, but I am sad about it. I had hoped that things would stabilize or even improve with the antibiotics. So had the doctor -- I could see the sadness in her eyes when she swivelled around on her stool after she looked at the readout on her computer. That was hard too. I have known her for several years, and she's a delightful person -- happy, loves her job, enjoys working and interacting with patients.

After that I had my eye exam. In addition to the doctor, two different medical residents were sent in to look at my eyes. This happens a lot -- I have a possibly unique autoimmune retinopathy, so everybody always wants to take a look at my retinas. What was different this time, though, was that no one asked my permission in advance. Students are slow, which is understandable, but my left eye is still very photosensitive, and the lights on the scopes are very bright. I find the experience painful and nauseating, and too much of it can trigger a migraine.

The other thing that was hard was that both of the medical residents treated my worsening mERG result as kind of an emergency. They wanted me to see a retina specialist; I have already seen several, and I let them know that politely, but they weren't ready to accept that there might be things they couldn't fix. They ganged up on me with my ophthomologist and he went along with them. So now I have yet another doctor's appointment that I'm not at all sure I want.

I asked my ophthomologist if seeing the retina specialist was likely to make any difference to my treatment, and he said "No, but I just really want to know what this is! And I'm sure you do too, don't you?"

Do I? I'm not sure it matters to me any more. 18 years ago, it might have made a difference, but at this point the parts of my retinas that are dead are dead. So, at least at the moment, it seems to come down to whether I want to humor the doctor. I'm just not sure that another lengthy and exhausting medical appointment is in my best interest, especially if nothing is going to better as a result. I will have to think on it...and maybe read a few of the retina specialist's papers. I have plenty of time -- the appointment is not until March.

That was yesterday. Today I had neurocognitive testing part 4b (as in, 4th round, second part). I'm in a flare, and was in a lot of pain and also worn out and sad from the day before. The flare was a full meal deal -- diarrhea, spinters in the joints, brain fog, hyperacusis, light sensitivity. The psychologist had planned 3 1/2 hours of testing, and I told him up front that I wasn't sure I was up to that. When we talked about my stamina before the first testing session, I told him that 2 hours was a good limit for me both in my ability to concentrate effectively and in not overdoing it physically. This must not have sunk in.

He unfortunately chose to start the second session by offering me his unsolicited opinion that, all other health issues aside, I perform best when I am not tired. This was said in a fatherly, patronizing tone. I just love it when health care professionals who have known me for about five minutes and lack a full grasp of my medical history start giving me opinions I didn't ask for. Do I sound bitter? Well, I am. I have had too much of this shit shoved down my throat. I know I'm in for it when someone says "Can I tell you what I think?" and then immediately launches into the opinion without waiting for me to give my permission. Inside my head I replied no shit, Sherlock, of COURSE fatigue affects my performance, but today actually the pain is more of a problem -- too bad there’s not much I can do about that. Or hey, here’s a thought, why not ask the patient what is hardest for her? She might have some ideas of her own, and you might even learn something useful that way. What I said was simply that this was actually a pretty average day for me (true), and that I would prefer to stop talking and get started so we could get through as much as possible.

So then we did tests and did tests and did tests. At one point the doorbell rang in the middle of a test. He wasn't happy, but I knew it was the pharmacy with my new Lamictal dose and Zofran (more on that later), so I apologized and told him I had to answer it. At another point, I guess he decided that I was responding too slowly, so he started reading the answers to me. It was frustrating, because I can often think of the answer if I have enough time -- I just have to sort through the fog in my head first. (Literally -- it's like wandering through fog with my hands out in front of me, waiting to bump into things and see if they are what I'm looking for.) So I explained that and asked him please to wait until I said I didn't know the answer before he supplied it to me. At 3, my pill alarm went off (I had warned him about that one) and I excused myself to take my meds and get a small snack. I got a brief second wind from the snack, but at 3:50 I suddenly crashed. I could feel myself bottoming out. I told him that I needed to stop really soon, and he said "Well, we only have another 30 minutes or so to go," and kept showing me new test pictures. Two pictures later I just melted down. I suddenly hit this awful state where words and pictures just stop making sense. Since light and sound were already painful, it was overwhelming. All I wanted to do was put my head down, close my eyes, cover my ears, and cry. He encouraged me to "just finish the last five images in this set" and I just lost it. I told him he had upset me by offering advice I did not ask for at the beginning of the session and that I had been doing my best to be polite and try hard on the tests. Then I reminded him of the 2-hour limit we had initially discussed, told him we had gone well past that in both sessions, and said again that I was extremely tired and needed to stop.

And then he got unpleasant. He told me that he didn't deserve to be spoken to like that when he had come for the express purpose of helping me. He told me that he had done me a favor by coming to my house -- which stung, because when we scheduled the second round of testing I made a special point of saying that I would come to him if it was more convenient. And then he said, in a sort of threatening way, that unless we finished the last five images in the subset we had been working on he wouldn't be able to score that test. So I told him I was willing for him to leave it out, and that I would also like him to leave out the remaining 30 minutes of tests, and just write up his report on what we had been able to finish.

So. Two things I have learned in the past two days.
1. I am not a toy. People must ask my permission to use various parts of my body as a medical school practice doll, and I have the right to say no. I think, from now on, if I don't get asked first, the answer is going to be no automatically.
2. No more health care professionals at my house except ones I already know and trust. I have had too many bad health care experiences, and in such cases I need to be able to leave. I can't leave if I'm already at home. Today would have been much simpler if, after 2 hours, I could have stood up, thanked the doctor, offered to schedule a return appointment to finish the testing, and walked out.

Also,
3. I think my new M.O. with health care is to have the absolute minimum necessary to get the job done. My number of appointments has been creeping up again, to 3 or 4 every week. It's too much, and burn-out is hitting me pretty hard.

Before I go to bed, I want to type in the new brain drug plan.
12.5 mg Lamictal daily gave me good depression control and adequate help with my mood swings, but shut down my gut and caused severe, full-body itching.
6.25 mg Lamictal daily and a couple of Dulcolax suppositories got my bowels moving again, but the lower Lamictal dose was no longer effective for depression. Still had some itching, too.
New plan: 10 mg Lamictal (compounded) daily plus 2-4 mg Zofran daily. My psychiatrist told me that Zofran is used for people with cholestasis and liver problems who have lots of itching, so we're hoping it will help with that; also, it has a common side effect of diarrhea, so we're hoping that will sort of zero out the constipating effect of the Lamictal. As Grandma used to say, I'm crossing all my fingers and toes that it will work. I had no idea how depressed I was before I started the Lamictal until I got that depressed again in a matter of days. Man, I so do not want to feel like that any more. Starting the new Lamictal dose tomorrow, and then the Zofran on Friday, so should have some idea of whether or not it's going to work by the time I have my next psych follow-up on 12/21.