Thursday, May 26, 2011

Recovery, recovery, recovery

Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. "Recovery is a process." You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?

Well, the first thing I want to say is that I would date my "recovery" process from, um, 1996 when I first started taking Zyprexa and experienced an awakening of the nearly proverbial kind (in a manner of speaking). "Awakening" of the kind first described by those taking Clozaril/clozapine. "Awakening" tantamount to those seen in the movie starring Robin Williams, though of course nothing really like those, since that illness was encephalitis lethargica and the drug was L-dopa. I felt that life had somehow suddenly "come to life" that the lights had come on in my brain. I had never felt anything like it before. One day I was dull and listless and unable to do more than read a poem on one page. Then next day, there I was, reading the entire New York Times, and wanting more. I could not believe how hungry I was to read and learn. And how much I could suddenly do so.

But would I really date my recovery from then? Hmm, no actually not really. After a few years of marginal, but real stability in the sense that I remained "hospital-free" I experienced a major psychotic break at the cusp of the new millennium, was hospitalized for three months in almost constant psychosis and for the next four and a half years spent nearly half of every year in the hospital.

And it was not only that I was hospitalized, but that in every hospital I was sent to I was so out of control that I was placed in 4-point restraints time and again, injected, secluded, and subject to any manner of brutality by hospital staff who did not understand or want to take the time to treat me. What they saw as willful "misbehavior" was always, always, always paranoia so profound that I dared not even state what I believed, lest it end worse for me. The fact is, I was controlled by a delusion that said, if a person is in your house, planning to kill you but acts as if he is a friend, then the last thing you should do is let him know that YOU know of his intentions: once he knows you know, the gig is up and there will be no escape...I do not know if you can follow my reasoning here, but in my paranoia I could not even speak to the staff at those hospitals of my fear because if I did, they would drop all their pretenses of being merely hospital staff...

Be that as it may (I have written many times of my brutal treatment in hospitals and will post them here in the days to come, for those who have not seen them at Wagblog), no, I would not date my recovery until about 2005, coinciding with the publication of the book I co-authored with my twin sister, DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia.

Somehow, around that time -- I had been off the Zyprexa for about a year and a half, and on Abilify and Geodon, miracle drugs in their own rights, but not the same as Zyprexa, just without the same devastating weight gain and sedation -- I managed a self-transformation, physically at least, to such an extent that in this building where I had lived for 10 years at the time, and where many people know one another by sight at least, I began getting asked such things as, "When did you move in?" Or, "Are you a newcomer?"

So I looked different, and I was on a book tour and learning new things by the minute -- how to travel and do public speaking and eat in hotels and so forth...And it was heady rather than frightening for the most part, thought of course it was exhausting and that brought its own dangers. But for 6 months or more of the book engagements I did wonderfully.

Nevertheless, even after the "acute" book tour was over, the hospitalizations never ended. Neither did the "out of control" episodes, or I regret to say, the brutality, not until the last stay in Dec/January at a hospital in eastern Connecticut, where they have decided to eschew violence as a policy.

Even so, I would never not say I was in recovery. Of course I am, despite the hospitalizations and repeated bouts of psychosis! So what is this "thing" recovery anyway? And if it is a process, what is the end result?

Usually when anyone else but someone with a psychiatric diagnosis speaks of recovery they mean, full-out cure. Let's not kid ourselves. When you recover from pneumonia, you get better, you do not have pneumonia any longer. When you recover from the flu, you are cured. When you recover from a broken leg, ditto. Yes, there may be residual damage, if you have a heart attack say, or pneumonia, but you do not still have the process itself going on, or you would not call yourself recovered. Rarely do people say that they are chronically IN recovery from anything but either a psychiatric illness or poorly controlled substance usage. But man, do we! The problem with this whale is that like Moby Dick it can lead you out to sea, capsize your boat and abandon you, floundering. What use it is to say, you are in recovery, if you remain miserable, despite all the medications stabilizing you so you are not "in the hospital" or "utilizing resources"?

One of the saddest things about schizophrenia is how little we are satisfied with, how small our lives can become without our even noticing it. Back in the 1980s and early 90s, when I was on Prolixin, I simply had no idea that my life would or even could expand so, that it could take in so much more than the four walls of my smoky room, and the coffee and cigarettes that I occupied my day with. Still, even then, I wrote an "first person article for the Schizophrenia Bulletin relating how much happier I was being on Prolixin than "before" and how much fuller my life was, how much more fulfilling etc. I had no idea how little I was living, because i had nothing to compare it to. Literally.

So what is recovery? Oh, gag me with a spoon! I hate that word. It is meaningless, since clearly I have not recovered from any illness, not in the sense that I 1) do not need medication 2) do not need the hospital from time to time 3) do not need a doctor's care frequently. So I am going to throw it away with the bathwater and say that I do not give a ssastar (read it backwards) about recovery, in or out, only that on Abilify and Geodon, and Latuda during crises, as well as several other medications for stability as well, I can do art, write and feel reasonably well much of the time.

But the important thing is that I am productive and do not feel strait-jacketed either by illness or by medication or by others interfering and telling me that I should or should not do or take or be this or that. If nothing else, the best thing these days, aside from having discovered that I can do art (which I took up for the very first time in December 2007) is finding that I have a little more confidence in myself to say to people, I am okay, and I will do these things my way because it is my life not yours and I know how I feel better than you do.

Friday, May 20, 2011

Latuda: Brief Personal Review

Note: Please check out my other later medication posts as my feelings about Latuda have changed...

I have linked to the official Latuda site above. I cannot vouch for more information than what was provided me there and in the original package insert.

Two weeks ago I had a psychotic break, despite taking both Abilify and Geodon for schizophrenia and Lamictal for mood symptoms.

To avoid a hospitalization, my doctor and I usually add Zyprexa, but I refused it this time, hating the rapid weight gain and overwhelming sedation, though it is otherwise a wonderful drug for me. This time, though somewhat dubious about being a "guinea pig," I agreed to try Latuda. Previously I had tried both Fanapt and Saphris with disastrous results. The latter in particular reduced me to complete anhedonia and apathy. I did nothing at all but sit in a chair and smoke, which was even worse than before, when at least I recognized that things were not right, that I did love to do art and writing, even though I could not do them at the time.

So on Friday, after an emergency appointment, I went home with a prescription for 40mg Latuda, which was upped to 80mg the next day.

Well, within about 4-5 days the voices screaming at me were gone, my thoughts were much clearer, my energy higher, my mood brighter. It seems impossible, but Latuda might be the medication I have long been looking for: Zyprexa-without-adverse-side-effects, which is to say, no weight gain and no extreme sedation.

Moreover, I wake in the morning eager to rise and meet whatever the day brings. To me, as an artist, poet and author this is so important. I haven't felt so much better or as hopeful in a very long while.

I will say that the one huge benefit of Zyprexa, my first real miracle drug, my "awakening drug" so to speak, was that I was able to read, to concentrate and think in a way that nothing has ever matched, no, not even Latuda. And though I miss this even now, I will have to wait for the day when the perfect drug comes out to permit all my cognitive capacities to function, not just some at a time under the influence of one drug or another. Until then, I prefer doing writing and art, under the influence of what I call the "output drugs" of Abilify and Geodon, (and Latuda) to the input drug of Zyprexa (on which I feed both on books and on food).

Both Abilify and Latuda although they do not help me read, do keep my mind alert and alive, allowing me to be creative, not drugged up. They are as well more than weight neutral, and in fact help me lose the Zyprexa-induced poundage. The one problem with Abilify is that at first it made me extremely irritable, even angry, until we combined it with Geodon. Now I never take the one without the other. Latuda when added to the mix, seems not to cause any additional problem, it just quickly alleviated the psychosis, which the other 2 meds did not cover.

I wanted to report these things here because it is so important for people taking anti-psychotic drugs, many with terrible side effects, to know that there may be another drug out there that might work for them. There is never a guarantee as we all know. Those that work for a certain person, might wreak havoc for another. Some swear for instance by Risperdal, and it only and consistently puts me into complete catatonia. Others hate Zyprexa and would never call anything about it miracle-working...

If anyone reading this has had experience with any of the drugs mentioned in this post and wishes to comment, I would be interested to hear from you.