May 01, 2006

May 1 Bits and pieces

I am now taking 2.5mg Zyprexa in am and 5mg Haldol in pm plus my regular meds (including Geodon 160mg and Abilify 5mg in am) with the result that the voices and MUSIC have decreased almost to zero, though I still intermittently hear a few notes repeated over and over or some faint singing with the words unintelligible, but no spoken words at all. And so far without any change in my appetite or loss of the ability to read. That is to say, with the Zyprexa-INduced ability to read and feel enthusiasm for reading intact - on no more than 2.5mg!

As for website forums that I visit, I am beginning to think I shouldn't go to any of them...Just use my blog to broadcast outward and not look for communication back in...Because no one wants interaction with me, or no group does. I put the kibosh on every group I join and kill the threads I enter...I KNOW this...and no amount of kind comments addressed to me afterwards can convince me otherwise, because I know they are lying to me...Why bother though, when they know they’ll be happier if I just leave? I've already left one site's forums, and won't return lest I make the people there unhappy again, and kill off a few more suicidal people and ruin a few more lives...But none of them there had SCZ that I could tell, so they didn't understand much of what I went through anyway. But the site that I go to now, they do all have SCZ and it is/was important to me, that group of contributors, because I need to meet people who experience what I do, and to whom I can talk...And there now too I feel like I poison every thread I join, every topic I answer; that even when someone addresses me positively, they are saying something negative "secretly." Why don't I just get the message and not go to website boards or forums? I'm not wanted and I do only harm not good. I can't stay anywhere very long before I do harm or long enough to get anything out of joining in the first place...

So why do I keep trying? I need to accept my loneliness and aloneness with this illness and get with the program...Just this past week I finally met another person with narcolepsy, for the first time in my life. Do I need the world? Why wasn't that enough for me? I once knew people with schizophrenia...yes, but I was not yet firmly diagnosed then myself. I didn't talk then about my experiences in any event. I was still too shy and embarrassed by MI and also too taken up by my symptoms to talk ABOUT them. Now that I can and want to talk to others with SCZ I know no one, except Joe, of course, and we have NO symptoms in common at all...No one we know believes we have the same illness, which is really weird and says something about how arbitrary the Dx seems to be sometimes!

Music is beginning to play in my bedroom while I write this in the living room, singers -- women in background with a deep-voiced man in foreground, but no words distinguishable and all of it rather faint and playing in very short repeated snatches, not really a tune but just the impression of music...Hard to say what...Not really singable, not the way it usually is at least....One deep note in a rhythm with a higher note or two on top in an opposing rhythm. Enough! If I ignore it I may not "hear" it at all, at least in the sense of not paying attention to it. Later: now I can “hear” the song “Mama’s little baby loves short’nin’ bread” whatever that is, clearly being sung, though at a low volume and in a Beverly Hillbilly style accompanied on a honky tonk “pianner.” Now it sounds like TV-commercial “jingle style” singing...Whatever that is!

This week on Thursday we travel to Bucks County PA for yet another NAMI engagement, most likely unpaid except for expenses and book sales. But I think we are supposed to have a big audience, 300 or so, which will be good. We do a radio show in Philly on Friday and go home afterwards. (It turns out, as Lynnie just told me, this NAMI gig is a paid event, so even better! Lest anyone think we are getting rich doing this, rest assured we have yet to make any money that doesn't go right back into paying our publicist, who got us the gig. If we “make” anything at all, it is only pennies on the dollar of what Lynnie could have made staying home and seeing patients...In that sense, she loses money each time we speak.)

Next week is similar to this one but with three different events, one each on Wed, Thurs and Fri. And the third week of May we have to fly to Arizona...which I dread the most, because I am deathly afraid of the metal detector and of being wanded and of the other hurdles to getting on the plane and of flying in general and air marshals and...I know, the risks of flying are infinitesimal, but that doesn't mean they are zero.

Posted by pamwagg at May 1, 2006 10:04 PM


I will tell you that I have not been diagnosed with this, but I have heard music. It is faint and in the background, chanting, and it's not in English. There's more but I am reluctant to talk about it. I am so glad you are doing well. I don't know what sites you go on, but it's easy to feel discouraged when going to sites where people are ill, and I can tell from your blog here that you are a wonderful and positive influence. Please take care and stay well.

Posted by: anonymous at May 2, 2006 08:54 PM

Hi, I'm curious what radio station are you going to be on? I am very close to Philadelphia and would be interested in listening.

Posted by: Elaine at May 2, 2006 07:35 PM

Dear Pammy,
Although I believe our instincts are correct, unfortunately the medical field must rely on FACTS. It appears that the voices are sneaking in through the back door. They seem to possess all the magical qualities of my beloved spirochetes. Therefore, it's probably best that you cease experimentation and trust that Dr. O knows what she's doing.
To address you feelings that you poison the websites that you visit, and the "old timers" resent your intruding into their space, I must say this, despite the fact that you maintain that you cannot be persuaded to think otherwise. I have personally visited the first site about which you wrote a blog. I read your comments on the destructive influence that you had on the blog. I then read the numerous comments of the blog regulars. They were so similar I actually became bored after a while. One frequent comment was,"Did I miss something? I have no problem with Pam's presence on the website, and I think she makes a valuable addition to our members." This theme is repeated again and again. Have you read any negative comments by anyone? I certainly didn't see any. I don't have to convince you of anything. You can go to the site yourself and read the comments, which apparently you neglected to do. If you still want to believe that you are poisoning their well, so be it. The actual comments do not support your belief.
You are about to embark upon a rather grueling schedule. Please be kinder to yourself than you were in this blog. Expect to receive praise about the book that relates so well the story of Pam and Lynnie. Most importantly, you must BELIEVE it. If the people who come to your readings etc. did not like the book, then it seems logical to me that they would not attend. N'est pas?
Supporting and caring always,Paula

Posted by: Paula Kirkpatrick at May 2, 2006 04:06 PM

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