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First of all, we had our first speaking engagement of the year at the Roslyn LI NY public Library this past Thursday, and though only 23 people came, we had a lively discussion and I believe people enjoyed the presentation. It was a good group to get started back on the road with, so thank you, Roslyn! Next, we do the prestigious RJ Julia's Elm Street Books in New Canaan Ct on Thursday Feb 9 for which, it being a bookstore, we'll probably use the same program that seemed to work so well at Roslyn and of which we ourselves are not yet tired...A few BIG "gigs" as my sister calls them are coming up and for those we must actually speechify, so I continue to work on the snippets I've published her, polishing, changing and perfecting...and eventually want something that is about 12 min long so I can also do a 4-6 min reading from the book and my "Forgiveness Is" poem. Lynnie usually talks longer than I do, being more at ease with it, and we have a lot of time for Q and A so unless the program goes for more than an hour, we're pretty well set.
Now on the the abilify: I dunno if it's the Abiify itself or if the quick drop of the Geodon, as the famed Dr O suggests, but she wants me to go back up 40mg on the Geodon and go back down more slowly. I've been feeling incredibly anxious, even fearful, not about anything in specific that I can put my finger on, just that something terrible is going to happen and even ativan only cuts through that a bit. I even don't want to cut out the Haldol yet because I'm afraid it will make this anxiety grow even more, and that's a weird thing for me to say, given that I've been complaining about the Haldol for months now.
But despite the Haldol, I'm able to write and write and write and even read some, though not a lot, and I'm in a fairly good mood, except for being fearful. So what more could I ask in this time of transition? Things won't be perfect until all the changes are made, I just have to be reasonably comfortable while they are made. I haven't heard from many people who take Abilify, but someone did kindly send me a website for discussions and I think I'll go back there or look for more...I KNOW it's worth a good trial, even if I can only tolerate half the lowest dose, hey if half of the lowest dose works, who is going to complain??? But right now I'm shaky and anxious and jittery and fearful. Luckily, unlike many people, I can sleep fine, because one of my narcolepsy drugs, Xyrem, makes certain sure of knocking me out, What do you guys do when you feel that way, though, anxious, fearful, jittery? Any suggestions -- besides taking more pills?
This is what I lean on, in no particular order, since each is important:
Medicare, a federal program for the elderly and disabled, for hospital and doctor bills and, newly, for medication payments, all without which I'd be in a back ward on Thorazine or Haldol and unable to function. More likely, since the long-term state hospitals have closed, I'd be on the streets.
A visiting nurse is paid for by Title 19, or Medicaid, a state run program, and she comes in twice a day, every day, to make sure I take my meds and to pour the night time liquid one which is so important to my well-being. They keep track of my day to day state of mind as well, take my BP once a month and give me my injections. I need them immensely and rely on their visits.
My sister pays for someone to come in once every two weeks to help me keep the apartment reasonably tidy, and we clean together though she does my laundry.
I see a private psychiatrist once a week as a gift from Lynnie to me, since the doc can't accept the miniscule payments from my two insurances Medicare and Title 19 and still make a living. Ditto for the doctor I see for CNS Lyme disease once every 3 months or so.
I have a car, yes, but can't drive further than a mile or two, so I depend on friends to drive me, and must do it on their schedules, but they accommodate me often.
And this building where I live in my own apartment is highly subsidized by the Dept of Housing and Urban Development so that my rent stays at 1/4th of my income. It had emergency buttons to summon help and is safe and kept up stupendously well.
I also lean on friends, surrogate family nearby, and real family farther away, for company and visits and conversation. I see "Aunt Lynn and Uncle Cy" at least once a week, if not a lot more often, and Joe and I both live in this building so we see one another daily. Even my father drives all the way from New Haven every two weeks to spend an hour or an hour and a half just talking, a visit I adore, after so much estrangement. Whenever my mother visits we have a great time as usual. And seeing Lynnie, the hardest to get to, because the farthest away, is happiness unalloyed!
So you see, needing help isn't so bad. As I said in my subject line, we ALL need somebody to lean on, and even in my state of recovery, I lean on many and much.
I think the Abilify must be working well, because I have been able to stay awake, to read a little for the first time in a year and a half, and my writing is pouring out of me, and I shower more regularly and I get exercise almost every day! I have finished that speech and even written another chapter for Divided Minds to have something new to read to audiences who have largely read the book.
Now the problem is my appetite -- I literally have none and regularly forget to eat. It's even distasteful when I remember I have to. Nothing appeals to me but fruit, though I choke down a llittle cottage cheese once in a while. But usually I subsist on apples and pears and grapes and of those only a few a day...I don't know how long I can keep going like this, esp with all the meds I take, but something in me just doesn't feel the reminder of hunger or the urge to eat...
You'd think that was good, given all the weight I gained on Zyprexa, but I've already lost it all and more (which I admit did make me very happy). But I am almost underweight now. People already say that I'm too thin, but that scale, the BMI (body-mass index) that tests whether you are overweight or not by your height and weight, says I'm just above "underweight" in the "Low but normal" range.
I do buy food at the store, when I go, but even there I can't think of much to buy that I want to eat. I'm a bit afraid because I don't want to drop dead from some med getting built up in my system without food to metabolize or something...Dunno if that can happen but I worry about it. Any advice?
It looks like I'm going to be on only the Abilify sooner than expected, because the pharmacy belatedly, very belatedly indeed since we asked them for a cross reference twice before, discovered a serious interaction of Biaxin, which I can't stop, witrh Geodon, and I found one of Haldol with Geodon...I hope to get off both Haldol and Geodon very quickly.
THe following is part of a draft of a new piece I am writing for our next set of speaking engagements. I thought you'd like to be in at the start of my writing, though you all know how much I polish and polish. I might even end up not using any of this at all, but for now, it is what it is.
...Medication is a powerful tool in the treatment of schizophrenia. It can make the difference between chronic illness and recovery and I would not be standing here to day without it. Talk therapy too. That has been much underrated in the recent past, yet it is essential. But the power of love is the power of hope, and it kept me afloat many times when I lost all hope for myself. Because someone else kept that flame alive for me, most often that person being Lynnie, my twin sister, I managed to survive, even when I least intended to and didn’t become one of the terrible statistics that haunt this condition; historically, 60% of patients with schizophrenia attempt suicide at least once and 10-15% succeed.
Having a twin sibling must be different from having a mere brother or sister, no matter how close. It is true that many's the time that Lynnie and I were out of touch, when others in our lives appeared closer to us than one another. Indeed, for several years, I did rely on other friends and other professionals rather than “bother” my twin with my problems; but once she accepted them, once I broke down and told her, once she saw them for herself, she couldn’t have been my greater advocate, no matter how little she feels now that she did.
I knew what she was fighting: the establishment clearly wanted nothing from her but silence, just as it wanted nothing from me but complete compliance and unquestioning obedience. The doctors who were in closest contact with me all saw that I had schizophrenia and said so on my many hospitalization papers, but the still-in-training social workers and psychologists of the day treatment program I went to for several years decided that my non compliance with the dreaded medication regimen, my chronic inability to look at people, and other bizarre behaviors like eating garbage from the trash rather than going to the cafeteria for meals, constituted “borderline behavior,” which had to be brutally tough-loved, which really meant abused, punished and humiliated out of me.
Lynnie herself understood abuse was going on, and felt helpless even as she knew it was the kind of climate her training had inspired in psychiatric communities. Psychiatry may have stopped blaming mothers for causing schizophrenia, but now by calling schizophrenia a functional disease, it was blaming the victim. Functional meant something the patients unconsciously chose and could control, but that also meant it was something they could choose not to have. In any event, fearing to do me more harm than good -- the staff reacted very poorly to family interventions -- she refrained from interfering, even when she felt I was being mistreated, though she unfailingly told me when it happened. Oddly, I felt protected, because she was at least there witnessing.
Finally, though, she had had enough and did step in, to save my life; it was no surprise to me...after all, she was my twin sister. She was not going to let me die in their care just because they said it was the best of care.
Our twin bond is a mystical thing. It may play out in the daily world as nothing much more than sisterly affection or an uncanny agreement, but to me, she is what my life is about and I could not live without her Although we no longer look alike, we still complete one another’s sentences and get interested in the same thing independently. For example, just last spring, she was studying Italian at her end of the state while unbeknownst to her up in mine I was looking for an Italian woman to exchange languages with. And many other such coincidences that no longer seem coincidental to us, but part of our normal daily lives. I may never have felt romantic love, but I love Lynnie, I know that, and I know she loves me.
Love is a powerful force between people, even in a brain-based disease. Perhaps it is more powerful in a brain disease than in others, because love is experienced by the brain. I don’t know why in the end, I clung so, clung to hope. I tried many times to avoid living. I tried to become a statistic. In Sept 2004, I set my leg on fire, and just last February during my last hospitalization, I had to decide whether or not to immolate myself or stay alive, those were my only options, that’s what my world had been reduced to. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness and it made a life’s worth of difference.
This will be a short entry just to tell you about the Abilify. So far I am only on a test dose, 5mg, because 2 drugs I take, one for depression and one for CNS Lyme disease, chronic, enhance the effects of the Abilify so we don't know what dose will be effective, but it will surely be a low one. However, I am down to 10mg of Haldol from 15mg.
I feel better already, though I don't know how much is the drug and how much the anticipation. I know I feel somewhat more motivated. At least I manage to get more done during the day and watch less HGTV! But it is still mostly difficult to get motivated, though I do carry through. I take more showers on my own too and wear something resembling PJs to bed instead of all my clothes, just as I'd started to on Zyprexa.
You know, except for the terrible sedation and the weight gain on Zyprexa, I'd still go back to that drug in a heart beat...the things I could do, the way I felt, how motivated and interested I was! And it all felt like me, only the me that I should have had for all those lost years. I still stand behind my olanzapine article, except that I'd add that the sedation wasn't mild but quite severe for me and the weight gain extremely troubling. But the benefits were tremendous.
HOWEVER, I can't take the drug, and there are downsides to it too, like the risk of diabetes, so I have to wipe that possibility off my slate permanently and hope something comes along that is just as good, and maybe the Abilify will be it!
I'd still love to hear from others who take or have taken this drug...You can reply by email if you prefer. email@example.com
As you may know, in my cocktail of drugs I now take both Geodon and Haldol, because the Geodon alone is not sufficient to treat my symptoms properly. But taking Haldol exacts a price, as most of you know, and it costs me dearly. Unlike Geodon, which leaves me interested in life and able to read and not dead to my feelings, or perhaps even helps me to feel those things (the way Zyprexa surely did), Haldol leaves me listless, deadened, unable to feel interest or motivation and even bored which I am not prone to in life in general. I can't read, can't write poetry with any verve or sense of inspiration, can't generally get up the energy to write creatively. I'm lucky I wasn't on it during the writing of the book, because I'd never have gotten it done.
It's true that I can muster up the wherewithal to be or feel interested, but it takes a lot of energy and I soon slip back into a state of cloudy indifference. Instead of contributing to a conversation as I might be expected to, I listen, and barely do that, because try as hard as I might to stay in touch, my mind drifts and fades into apathy and I lose track of what the other person or persons are saying finally. If they didn't already like me, or trust that I liked them, or understand that this was due to the medication, they would feel terribly insulted or hurt if they knew how little I take in or recall of what was said during a visit...
All of which is due, I feel to Haldol. So we are trying Abilify, in order to stop both other drugs, and I have started it with great hopes, though I am only on a test dose and still take the other drugs, lest I relapse again because I'm not on any medication. But I feel good about this trial and am truly optimistic. Maybe it will be, for me at least, a miracle drug, like the Zyprexa always was, but without the weight gain or sedation...I can only hope. Maybe too, if it works well, I won't need some of the other adjunct meds I now take because the Geodon works so imperfectly. I'd love to be on fewer pills than I am now.
Anybody take Abilify out there? What has been your response? What are your side effects? Do you feel better on it? Tell me!