March 31, 2006

More journal entries

These are more entries from my psychTracker journal from the last few days:

March 27, 2006 - 12:48 PM
Am sleepier during the day w/ Zyprexa yet I can't nap because of the "squirrels"
in my legs. These cause such an agony of restlessness that I have to get up and
move my muscles doing anything but letting them just rest...Called Dr O about it
and she said to take a prn Ativan for now and we'd see about inc'ing the
Inderal later.

Earlier, I read an entire copy of Harper's Magazine with interest, excitement
and passion! I even felt like reading more on the subjects in it. A great sign
of improved concentration and motivation. Cannot take a walk or leave apartment
by myself yet though. Still too worried about being seen and talked about.
Worried that I'll hear my name again...

But I should do something! Anything that keeps me from wanting to go to the
Forum at this website is good, because I am not wanted there, am actively
disliked there and am poisonous there (a contaminant) so I should not show my
"face"...if I want to be moral and ethical...But can the Whore of Satan actually
act in a moral fashion without that action by itself being in its essence
immoral? People may say what they like to me there, but I know that underneath
things I am killing everyone off and that they know it and are afraid of me and
want me to leave...Dunno which is stronger, their hatred and shunning or my
poison and contamination, but it comes down to the same conclusion: if I want to
do the Right Thing I will Pack up and Leave! Or at least just do stats and
journal for myself and leave the others alone...

March 28, 2006 - 11:09 PM
The day was okay mostly, except that I stayed away from this site until now, and
maybe that is why it went okay... But I know I upset people and drive them away
because of my huge oppressive presence there, as well as everywhere, this
Presence that threatens to overwhelm everyone and everything with its
evil...Meanwhile, I have to force myself to loook at people as harmless as Ana
(which I do for the sake of politeness) because NO ONE is harmless, anyone could
get in, could enter my brain, myself, and do damage or control me, make me think
or do what they want, turn me into a Zombie...Am eating better, but fear it is
more the Zyprexa than me, really me...Made Lynn L some blonde brownies this
morning -- from scratch and by my own recipe, in my head, just adding and mixing
ingredients as I thought they should go, and they came out great! (I thought,
and so did Joe...) Lynn doesn't look too too swollen from the prednisone, she
just looks like another person, a not-lynn Lynn, or another sister of Lynn's.

March 29, 2006 - 7:06 PM
Saw Dr O today and she drew me a diagram of paranoia and how it affects the
brain, or how the brain effects it, causes it. I have to study it, see if I can
get it into my head and absorb the lesson...
I think it might be even more helpful than the "errant spark" notion that I use now...

Joe took me grocery shopping, but did none of his own, so I felt safe
because he didn't wander but stayed close by all the time. He also talked me
into buying some protein, chicken breasts and boneless pork chops that I couold
wrap individually and freeze for later meals. Bought tons of yogurt and some
cottage cheese and lotsa fresh fruit and vegetables...But it's still hard to
decide what to eat and when...

I read posts in the general forum today but didn't answer any...Not sure I'm
even allowed to read them at this point without frightening people away or
oppressing them into leaving...I have to stay away...I swear I will. I'm an ill
wind that blows nobody anything good....

I want to start taking walks outside, but I'm still afraid that people will
talk about how I walk and will make fun of me or tell me not to walk in front of
their houses because i'm a disgrace. A note: She can give me 5mg of Haldol for
now and I'll take it PRN for now, but I refuse to take it regularly or for
longer than a week! I just started being able to read and I won't jeopardize
that now. I'd rather put up with some symptoms, if that's what they are...

The squirrels came at exactly the same time today as yesterday and the day
before - just about lunchtime, c noon. THey were agonizing again, and I had to
wait almost an hour after I took half of an ativan before the discomfort
finally eased. It's not exactly pain I feel, and yet it is indeed agonizing, in
a strange way that I find myself wordless to explain. Someone said it was like
her calves were hollow and that someone was scrubbing them inside with a bottle
brush, which is as good a description as any; I always said it is like I have
squirrels gnawing at the place where my feet join my ankles and up into my
calves (not to mention down into my feet).

But that doesn't quite convey the utter strangeness of the experience the way
the bottlebrushing does. Anyhow, at least the Ativan works, and it works all day
right up till bedtime, when I can take another half if I need to. Usually
though, I can get to sleep before it starts up again and I'll sleep through the
night. Although this is not a typical pattern for RLS, it is certainly the case
that I used to have the biggest problem at HS, it is only now that I can treat
it with Ativan that I usually do so earlier in the day...when I am also at rest
and sedentary. I wonder, as well, if the Xyrem doesn't suppress them too...

March 30, 2006 - 8:29 PM
Went to NAMI-CT today to volunteer -- my job maintaining website. Memorized
everyone's name and face before I went (from website pics) and said their names
when I saw them, surprised them. But scared! Wasn't sure I should have done
that, was it too familiar? Too forced? They thought I had nefarious motives, I'm
sure. I learned the stuff quickly and did the work quickly. It was fun, but took
no time, there won't be much work to do, not enough for me, I don't think,
unless they come up with more than it looks like right now...Heard my name
called several times in parking lot and in outer office, man's voice, no man in
office!...Didn't want to tell anyone but Ana the p.m. RN picked up on it. I told
her I wasn't taking the Haldol anyway, it was my choice to put up with the
symptoms I chose to tolerate as a trade-off for not being deadened. The Zyprexa
continues to help me feel better and concentrate, and I think that goes a long
way towards making symptoms that I still have bearable...Went to the other
site's forums because they have an active SZ one but found mostly anonymous
"guests" ranting about Szasz stuff and how SZ isn't a real disease and how
medication causes brain damage and how thoughts and feelings and behavior are
not "medical" or "physical" and therefore can't be ill...I'd tried to explain
how they were all neurological in origin but "guest" was too full of self to
listen, and went on ranting w/o hearing a thing, or even thinking about
anything...Nevertheless, he/she slipped a tiny sliver of a worry under the
door...of Maybe...maybe they are right...Maybe this isn't an illness, maybe the
meds are doing more harm than good, maybe I could get better without them and
even better than with them...Need to do some research, but in the end it's down
to: Just whom do you trust????

Posted by pamwagg at 09:58 PM | Comments (2)

March 24, 2006

Supplement Website etc

There is a new website I can recommend that might supplement this one, especially for consumers/patients/sufferers (whatever term you like to use) or even observant caregivers who want to keep track of continuing symptoms and see how varying circumstances correlate with certain problems that wax and wane etc. The site is and it is free, you just have to register, though you can visit most of the site as a guest. Brand new, open since maybe last August, or so I gather, there are glitches and some pages that still need to be written. But the symptom tracker part works pretty well and yields very interesting graphical information after a few weeks. It also has a journaling feature that lets you add into the tracker more detailed info and observations. Here are parts of my latest entries, to update you on the latest doings of the Divided Minds Duo On Tour. Remember that the top paragraph is the latest and the bottom one is the earliest as with a blog.

March 24th Today after finally getting home from Virginia, I answered more posts at the psychtracker forum but feel very uneasy about doing so. I sense that I am chasing people away from the site, that more and more people who used to come and post regularly are being scared off because I frequent the site and they can feel it through their computers. They sense the heaviness that I bring to the site, the weight of evil, of the Ogre that Ate Manhattan, of Satan's Whore...People are afraid of me and so they leave, and won't come back until I no longer "attend" or show up at the forums. I dunno if I can even return as a guest without infecting them or being detected via computer. I'm afraid of my own power, no wonder they are too. [Okay, okay, Pam...Now, calm down. What is this? You "feel," you "sense"...What were you supposed to tell yourself? Mmmmmm, hm. The feeling is primary, it comes first, before the thought that explains it, the errant spark somewhere in the brain that produces a "feeling" just like a probe does in neurosurgery...the feeling just arises, pop! But the brain has to make sense of it, so it confabulates a "reasonable" story to explain the feeling...What is this called? A delusion...Oh. OH. Ohhhhh...I see.

March 23, 2006 - 9:19 PM Had SRO at Virginia Festival of the Book this morning. Again. Plus all the books sold out at both this and yesterday's events. We're beginning to get certain programs down pat, even though we adapt each one to the particular audience we are presenting to. I am getting braver, too, and can actually start the "act" now, rather than making Lynnie do it all the time...The paranoia has diminished to almost nothing, I think, except for a few discrete episodes - like being afraid that a certain someone (a man I didn't know) from the audience was walking behind me etc. Surprisingly, I did have some trouble w/ voices. This happened about 4 times over the past two days, no more than that, but each time they were loud, absolutely clear and unmistakably calling me by name. Yet no one was ever there when I turned to look. One of the times it happened, I asked Lynnie if she'd heard it but she hadn't...So I did figure out, eventually, that no one was calling me, that it was a hallucination. And I worked through the process of tracking it to the internal spark of electricity in my brain that caused me to "hear" a sound that didn't actually have a source outside my head. But how will this knowledge help me? Will it keep the voices from talking? No, apparently not. It doesn't stop the delusions, at any rate...So what good is it? What good is figuring out that certain things are delusions and hallucinations if knowing what they are doesn't stop you from having them??? I'll have to ask Dr O what I'm supposed to do with this information...

March 22, 2006 - 8:33 PM We did the Medical Center Hour talk this afternoon and had standing room only! Audience ranged from docs to Rn's to high schoolers. I made an embarrassing mistake afterwards when trying to explain the feelings of electrocution while taking Seroquel and Clozaril to someone who wanted to know what side effects I'd had. I said I reached a "climax" instead of what I'd meant to say, a threshold!!!! Couldn't find the word so my brain simply substituted a reasonable synonym...Hah! I meant in fact that electricity seemed to build up in my brain to a threshold and then a kind of frightening seizure would occur, and indeed pre-seizure activity was diagnosed. Needless to say, after I put my foot in my mouth, they didn't stick around to hear more! Tee hee. I guess they'll have a tale to NOT tell their kids about how inappropriate we who have SZ can be in public! Honest, I did NOT do it on purpose. Couldn't have done it on purpose even had I wanted to! It just isn't me...which is what makes it so funny. If I'd had to do it on purpose wild horses couldn't have dragged it out of me! BTW,the delusional thinking and paranoia are melting away ever since we upped the Zyprexa that 2.5mg. I'm only taking a mere 7.5mg yet it's actually working just like the first time! I am beginning to feel quite well. And I have hope that I will be symptom-free eventually, exactly where I want to be, all without untoward or unbearable side effects, knock on wood.

Posted by pamwagg at 09:20 PM | Comments (2)

March 16, 2006

How I'm doing now...

I'm taking 5mg of Zyprexa now, no increase yet, and I hope you all can tell from yesterday's entry that it has already sharpened up my mind. The very fact that I could read that article, and reread and reread it until I both understood and found I disagreed with it, speaks volumes. Indeed, as far as magazines go, I am able to read most articles if they are no longer than 2-3 pp. Longer than that and I have to break them into two sittings. I have not yet attempted to read a book, nor felt any urge or spontaneous spark of interest in doing so, alas. I realize that it sounds rather self-indulgent to wait for a spontaneous spark instead of making myself slog through something I "ought" to read, like, say, a newspaper. And indeed, if I thought it would work, I would. But slogging and flogging myself into reading something doesn't accomplish anything. My mind simply shuts down. If I try to read I cannot get a line into my head and I'm completely distracted by any stray thought or sound. I might think I'm reading, get all the way to the end, only to realize I have not the slightest clue as to what it is I've just read. So much for that bit of self-punishment masquerading as an encouragement to self-discipline. Fie on you!

Anyhow, as I was saying, I am able to read a little. Also, I have motivation and interest enough to compose and send a snail mail letter to the editor about my contrasting opinion, a letter moreover that took me the better part of 2 hours to write. So the Zyprexa is helping in those areas.

On the other hand, I cannot shake the feeling that when I go outside people talk about me, think about me and mock me, makinng fun of the way I walk. I do understand that this is a delusion. That is, I understand it to the extent that I've been told so and have worked it through the aberrant-spark-of-fear-in-my-brain process to come to that conclusion...But you know, it still feels real and the fear is still there and the sense that I am being watched hasn't changed, so how do I reconcile the two: the thought process that tells me it is a delusion with the adamant and convincing feelings of paranoia? Rather, how do I get myself to go with the rational thought process and not with sensationss that are so much stronger? I confess I'm totally at a loss. Any ideas?

Posted by pamwagg at 02:56 PM | Comments (7)

March 15, 2006

On Mania and Catatonia and the Perception of TIme

I read in Discover magazine that someone did a preliminary study of time perception where he had two novice bunjee-jumpers fall 150 feet. They wore on their wrists a kind of display meter that blazed out while they fell a sequence of numbers so quickly it was impossible to read them, not, at least, while on stable ground. When the jumps were over, the terrified twosome were able to recite all of the numbers in sequence. The conclusion was, in effect, that time had slowed down for them as they fell. In the same way, traumatic events sometimes seem to happen in slow motion during a instant of crisis. In fact, time itself didn’t slow down. In fact, the mind speeded up. The mind became able to read those numbers after all. So it seemed as if time slowed down in order to let it. As the article puts it, Speed the mind, slow the [perceived] time. (brackets mine)

With amphetamines, the experience is euphoric not terrifying, but I believe it has to do with slowed down time as well, and with the fact that one is being more than ordinarily productive. The reason one writes that paper faster is because one has more mental time in which to write. If the actual time and the work to be accomplished can't and don’t change, just the perception of time, the perception must be that one has plenty. Or else, which has nothing to do with perception, one’s capacities within time are enhanced. Or both.

Something like this happens in mania when the world seems to be moving too slowly compared to manic individuals. They know they are going faster than the norm; the rest of the world are dawdlers. Grandiosely they might say, “I have transcended time. Time is nothing to me.” Indeed, at first, at the hypomanic stage, it seems to be true. They may be brimming with endless energy and ideas, able to work non-stop, often going days producing brilliantly on little sleep. They may in fact fit more into an hour than most people can think of. Their minds are supercharged. Then full-blown mania hits and it all goes up in smoke as this hypomanic energy suddenly explodes like a supernova.

I think where people get confused, and indeed where the author of the Discover article himself got confused, was in our notion of boredom, when an hour seems to take forever, and time “hangs heavy on your hands.” (is that the expression? Hangs on something at any rate...). That is another discussion altogether. In mania, the slowing down of time is not as noticeable, or not as terrible, because of one's enhanced energy, interest and productiveness. “She can do more in an hour than anyone else can do in a day,” is the sort of thing said of a hypomanic person. And I would agree. It’s not that an hour is shorter, it’s that an hour has more space in it to fill and fill it she does. The only way to overfill an hour (with the “more than anyone else can do”) is to expand it, which means to make it longer. What’s lucky for the hypomanic people of the world is that this doesn’t matter; they aren’t bored, no, most enjoy every minute.

The manic person and the amphetamine taker are similar: they produce more, at least at first, and the only way to produce more is to slow perceived time, that is, speed the mind, or to increase the work done. I believe it is both: the speed user and the person experiencing a manic episode have exquisitely tooled minds going 200mph yet they live by the world’s clocks. The speed at which they think and behave is in fact enhanced: they get more work done. The rest of the world seems slowed down by comparison. The world’s time, consensual time if you will, must seem slower too, because after all it is the world's clock the manic person must go by. Time is not speeded up as most people assume just because the manic person himself races from place to place, project to project. It is the mind, and the body it controls, that is going fast. Not time. Speed the mind, slow the time.

But what about the opposite: slow the mind and speed the time? Is there such a thing? Yes, in fact there is, and it lies on the other end of the spectrum, in catatonia and perhaps in cannabis. When I was catatonic I lay for days motionless or extremely slowed down, so that it might take a half an hour to raise my hand to my mouth to eat. Even then, it might not get that far before freezing in some awkward mid-way position. When I used pot, years and years ago I assure you, the same thing would happen under its influence: I'd become mesmerized by the drug and my movement slowed to a slide show. Others might become absorbed by the wonderful textures of things or the beauty of a single sound, a color, an exquisite taste. We’d all be caught up by something and slowed by it, stopping in order to perceive it more thoroughly. The strange thing about this, as in catatonia, is that time itself, the world’s time, perceived time, speeded up. It had to.

As I lay in bed, barely a muscle twitching except for the constant groan that came and went with my breaths, I noticed that an hour raced by as if it were barely ten minutes. The entire day passed in an hour, so it seemed. Lunch followed seconds upon finishing breakfast and so forth. Time barely touched the ground, it whizzed by so fast. Yet these thoughts themselves came to me like molasses oozed slooowly into a batter. Just so with marijuana. I remember that the effects of a joint would last all night, but that the night itself seemed very short, only as long as the last half hour or so. Someone else has suggested that this is due to the temporary loss of short-term memory that cannabis causes. Maybe so. But it doesn’t explain the slowed-down-ness of the gaze, the deep study of texture and sensation in which everyone indulged, utterly blissful. Minds were slow to think, but deep in wonder, while time ran away like the current of a river. Slow the mind, speed the time.

Posted by pamwagg at 08:28 PM | Comments (3)

March 13, 2006

Update on "Worried and Nervous"

I did go back on Zyprexa 5mg, which has already helped my concentration a little. I actually read a magazine, not a sophisticated one, but the fact that I read anything at all amazes me. I haven't read a book or magazine from cover to cover with enjoyment and without forcing myself to grind through it (largely without comprehension) since I dunno how long. At least two years...But now, a week after I started the Zyprexa I had the urge to pick up something to read, rather than parking myself in front of the TV, and I was able to actually read it.

The urge to open the mag or book is as important as the ability to read what's there, you know. Because before this, I didn't even feel like picking up the book to try. I just had no interest or motivation whatsoever. Suddenly, it doesn't feel so intolerably difficult. In fact, I feel this compelling urge to do precisely that: I feel curiosity to find out what is inside the book!

Curiosity, interest, compelling urge -- these were not things I felt just a week ago. They have to be related to the Zyprexa, and I know they are, because the same process happened when I took it in 1996.
But it stuns me now just as it did then, the colors coming back into the mental landscape. I feel other feelings a little more too, like a wooden doll that is coming to life. Even when I sounded depressed, I felt more empty and deadened, deficient of emotions, than actually down in mood. I just didn't understand this until I was able to feel these new feelings.

Also, I'm glad to report that though it leaves me still having to gain weight, the drug itself does not at this dose increase my appetite or sedate me at all. These are good things. I want to gain weight on my own, not eat voraciously without enjoyment simply because I'm driven to. And I'm so glad that I don't feel oppressed by sleepiness, which was my other worry about the Zyprexa...So far so good, in other words.

I still feel that other people are thinking and talking about me. I won't take a walk or go anywhere without someone going with me so I'm not alone and without protection. But I'm hoping these fears will pass too. So things are looking like they may be getting better soon...there is progress being made at the very least. TTFN

Posted by pamwagg at 09:39 PM | Comments (2)

Speech on Schizophrenia and Stigma

This is the new speech that I've been giving to various groups when a formal presentation is asked of us. Sometimes they'll give us another topic or restrict us to a certain time limit, and then I have to write something entirely new. But this one is the standard fare -- new material, with a little cannibalized from the old, and all of it put together into one body.

2006 Schizophrenia Speech

I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.

For decades, I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door.

The room is stigma, the darkness is fear and the lock is ignorance.

I want to speak to you today, having had schizophrenia for decades, to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma and get you open that door. I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.

Medication. What a struggle! I was never going to take medication. Medication meant I was sick. I hated the label, I hated the very idea of a label. But I hated the side effects most. Never mind what medication did FOR me, I hated what it did TO me.

For starters, there was: dullness, deadness, lack of motivation, feelings of impending doom. Then: not being able to swallow my saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Drooling or dry mouth, stiffness or shaking, agonizing internal restlessness, movement disorders...Need I go on?

Well, given all that, what would you do? Time after time, I stopped taking first one pill then another and another...

Predictably, I became psychotic again. People with schizophrenia are faced with this all the time. Either they stay psychotic or they suffer side effects that can sometimes be as bad or worse than the illness.

If you know someone who has been psychotic, you’ve seen what a horrendous state it is, so this might seem hard to believe. How could side effects be worse than psychosis?

In fact, sometimes the side effects are life threatening and then the medication has to be stopped even when it works. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.

The right medication can help, though, and when the side effects are tolerable, it can make the difference between chronic illness and recovery. I wouldn’t be standing here to day without it.

Tolerable, though, is the operative word. I don’t have to believe my pills help me; I’ve promised to take them anyway. If I didn’t feel they were more harmless than harmful, in other words, if the side effects weren’t tolerable, I couldn’t have made that promise to begin with.

But “medication compliance” is iffy for other reasons as well. Some take medication until they feel better, then stop it because they feel better, only to get sick again. This sets up a destructive cycle into which they often have little insight. Other people with schizophrenia do not believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will a pill solve that?

If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.

I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” He was a pro.

The technician, on the other hand, passed over the tray of probes then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room. Stigma.

Did you know that stigma originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers, it brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients,” or “schizos” or imply that we are axe-murderers just waiting to happen.

The effect of ignorance is the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind, the mayors clean city streets of us and put us away in shelters, supposedly for our own good or imprison us for minor infractions and lower the crime rate.

But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?

Side effects, lack of insight, stigma, -- side effects topping the list – any and all can lead someone to stop taking medication and compliance is almost always necessary for recovery. Talk therapy is crucial anyway. People used to think, Oh, schizophrenia, just give him some pills and that’s as good as he’s going to get. He doesn’t need to talk to a therapist. Why, talking might even be bad for him! This sort of mentality helped no one. People with schizophrenia are often frightened and lonely. At the very least they need someone to talk to.

But discussion can be even more profitable. My own doctor told me ad infinitum that I have an illness, a brain disease. Again and again, she insisted that hallucinations originate in the brain and that delusions are not real just because they feel real. I needed to hear this, though it took years to sink in. She always treated me not as a schizophrenic, but as a person, a full and complete human being with an illness that happened to be called schizophrenia. This is important. We don’t call a heart attack victim a cardiac, do we? Or a person suffering from meningitis – another brain disease -- a meningitic. No illness is all there is to a person, no illness erases the human being inside.

In September, 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005, in the hospital again. I’d been admitted to psychiatric units many many times, by then, for a total of at least 8 years. This time voices yelled at me to burn the rest of my body.

That was it. I’d been tied down, locked in, shot up and kept inside for the last time. I had to decide: live or die.

One evening Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new, just for a change?” She called this ‘bushwhacking.’ I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.

It’s still a mystery to me why this took, when nothing had so many times before. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.

After more than three decades of illness, recovery is still new to me. I didn’t expect it and it still takes me by surprise to be able to say, “No, I don’t hear voices much any more.” A lot of life passed me by in 35 years. After all is said and done, I have to realize that I’m a 53 year old on the outside but an adolescent inside and I have some growing up to do.

Hard as it sometimes is, I’ve chosen life, and that means I go on, no matter what. But when I look back, I don’t know how I survived all those years. I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness. It made a life’s worth of difference.

Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember: it’s all in the wrist.

Those are not bad lessons, and you can learn them from the same people you keep locked away in that dank little room. We have so much to teach you.

That’s what I mean, you see. Don’t leave us in the dark: wondrous things can happen when the doors open and the walls come down.

Posted by pamwagg at 09:27 PM | Comments (6)

March 03, 2006

Nervous and worried

I don't know why I'm feeling this way, slightly trembly nervous and frightened, and worried about all sorts of things, feeling guilty in general, like I'm responsible for having done many terrible things. I can't quite define what is behind these feelings, that is what I'm frightened of or worried about -- some of it is that I walk funny, with my arms stuck out and not swinging and my hands flapping and I suspect people notice and think mean thoughts about me, though I do not hear them say anything .... I also don't know what I'm guilty of, except that I feel like I make mistakes and hurt or anger people all the time, every time I open my mouth or state an opinion or even try to help someone, I just put my foot in my mouth and make things bad or worse...But I don't know what it is I've said, what words were wrong, what message I said that I shouldn't have, so I don't know how to make it better. People seem angry with me all the time, except for Sal, Lynnie's love of loves.

I don't know what is going on. I am calm on the outside, and don't talk about it. I have even been shopping, have left my apartment and gone out once or twice (part of the problem I think, because I was exposed to people). But I feel anger everywhere, and assume I have caused it, and don't know how to fix things, though I try and try and only make things worse. I feel like I should shut up and leave everyone alone for a change...

Anyhow, I think because she understands this is going on from some of the things I've said or asked her, Dr O raised my Geodon back to 160mg and asked me to go back on Haldol. I refuse absolutely, absolutely. I will not. I hate that stuff! I finally don't feel deadened inside and dull. Though I still can't read and still have little motivation or get up and go...Getting off it didn't change that much, but that means getting back on it wouldn't change much, and I don't want to. There's such a thing as TOO MANY DAMNED MEDS! I want even fewer, I want to stop the Abilify now, since it ain't working, not start another drug. Most people take ONE antipsychotic. Why should I take three, even if two are at low doses? It's ridiculous...

I do trust Dr O, immensely. I just do not want to take this drug, Haldol, and refuse on principle and because I do not think it helps or is more helpful than harmful. If I could only take a little Zyprexa...But Dr O won't let me and I remain ambivalent about pushing the issue any further.

BTW Have any of you heard about the drug called Byetta (I believe that is the name). The NYTimes of Mar 3 reported that Lilly (!) had developed a drug for overweight people with diabetes that helped them lose significant amounts of weight, sometimes 70 lbs or more. It also lowers their blood glucose levels at the same time. Now people want to use it off label as a weight loss drug, and some do, if they can get it, tho off-label use is discouraged. Oddly enough, given the enormous potential of financial gain, Lilly says it has no plans to study it for that purpose. What I find rather suspect that they can develop a drug to help weight gain in diabetes, but not one to help prevent weight gain their own drug Zyprexa.

Lest any of you with Zyprexa or Seroquel-induced weight gain want to try this new drug, my sister worries that it might not be the best thing, until studied more for the off-label purpose. She would want to know more about why the antipyschotics alter glucose and lipid

metabolism and how that might be prevented, eliminating the weight gain and danger of diabetes in the first place. You see, Byetta might change the weight gain, yes, but you'd be thin and still have a deranged metabolism. This means that you'd still suffer silently from raised lipid levels, like very high cholesterol and triglyerides...If this were NOT the case, you could bet I'd be the first to beg for it and go back to the Zyprexa!

Meanwhile, I wait and wait for a drug that works as well, and worry and feel guilty and frightened, and WON'T give in and take Haldol...Anyone have other suggestions of drugs that might work but aren't so awful? Never mind. I've taken them all, and I don't want to take any more anyway!

Posted by pamwagg at 05:23 PM | Comments (6)