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is Wednesday so I had to get up early in order to make the hour-long trip to see Dr O at 10am. Joe came up at 8:00, still functioning so well he insists on driving me, though I have arranged another driver when the time comes that he can't. Though his voice was poor this morning, we talked for a half hour, until the nurse came to give me my medications, and then we were on our way.
Made it just as Dr O was pulling into the parking lot herself, so I walked upstairs with her while Joe went to get breakfast. During my appointment, we talked about neuro-feedback, a technique of dealing with brain waves of a certain kind that she says helps the brain to heal. I cancelled a trial session of this, mostly because I'm afraid she'd be able to read my mind and I need some privacy. She tried to tell me it wasn't like that, but frankly, I'm still afraid...and refuse to do it.
We also discussed an Axis II diagnosis that had never before appeared on my discharge summary. I questioned her about this, wondering about its validity. Her answer definitely did not convince me, but there were other matters to deal with so I said, Okay, and left it there. The other matter was my issue with weight and food, the latter being so very difficult for me to get down. I keep forgetting to eat and even when I remember and tell myself it's time to eat lunch, say, I can get caught by a stray thought and distracted so that I forget what I meant to do and do something else for so long that it is suppertime before I know it. Even then I might not feel hungry. If I were hungry, I would eat. I know that, because I eat on the Zyprexa despite all my vows not to gain weight. But I don't feel hungry and food seems so distasteful to me that I just don't think to eat until I get scared by how little I've actually consumed all day and finally do eat something to bring the calories up at least a little.
I'm not losing weight, though, don't worry. My metabolism has so adjusted to this not eating style of life that I survive on it fine. I weigh between 99-101 lbs (the diurnal variations) so while I'm thin, underweight I guess, I'm hardly at death's door! BD However, Dr O did warn me that if I start losing weight for any reason, she'd have to hospitalize me if I dropped to 90lbs. That won't happen. I think I'd be horrified by what I was doing to myself before then, and start eating whether I wanted to or not!
After my appointment and the hour-long drive home, Joe went to take a nap and I came home to this apartment and my trusty computer, at which I spend so much time every day. Did e-mail and some research on the net. Read about 10 pages in Bee Season by Myla Goldberg, a novel I read and loved just last year, I know that much, but which otherwise has so slipped from memory that I am reading it again as if for the first time. This happens so often it is scary. I find I have trouble reading and remembering anything I read. I can't seem to truly learn new things, though I do of course, because I "get" the news and know more or less what is going on in the world (though I often forget it) and meet and remember people etc. But learning as in school-type learning is difficult, very, and I am glad that school is behind me, because I couldn't even take a class right now.
I forgot lunch again, though I said several times, "I've got to eat lunch..." then promptly was distracted by other thoughts, incoming e-mail, another project that needed my attention, something, anything! Finally, the evening nurse, Ana, came to give me the pm meds. She said I looked worn out and exhausted, which was weird because I felt fine, but then she asked me if I ate anything today...and didn't like it one bit that I'd only had a bit of turkey for breakfast, nothing since. "That's why you look so washed out, Pam. You haven't eaten anything! Now I want you to eat supper, now. Okay?" I mumbled assent as I let her out. Then opened the fridge. Oh gawd, I don't want any of that. I went back to the computer until 6:30pm when I remembered once again my promise to Ana. Okay, so I better eat something. But what? Well, there is some fresh cauliflower and carrots...How about cooking those in chicken broth? So I did that, but was caught up in computer stuff when the timer went off, and forgot it until 7:45. Finally ate. But it wasn't enough calories and so I'm going to have to think of something to bring those up tonight once again...
Tomorrow I get a ride in a Town Car all the way to Wilton to meet with 2 people who want us to do interviews with "national media" if they can arrange it, in order to publicize an international caregiver (for those withmental illnesses like schizophrenia and bipolar) survey. Dunno what it's all about but we find out Thursday I guess. Also tomorrow is an ALS Support group that Joe and I and another friend are all attending in the morning. That ought to be informative and I hope to meet a woman with whom I've been corresponding, from the ALS Association of CT.
As for symptoms, few have bothered me today except for persistent "music" which played continuously morning to night. Only a couple times did voices intrude and then the words were mumbled and hard to understand, so I didn't pay much attention, though the intent was clearly malicious, I could tell from the inflection.
So that's another day that if you lived in my skin you would have lived through. And my apologies for such a completely lackluster post! I guess I am more tired than I thought. I promise to do better next time.Posted by pamwagg at September 6, 2006 07:31 PM