Tuesday, June 29, 2010

health issues & leavin' on a jet plane

My speech to the law enforcement officers last week went really well. I was nervous, and shaky, but managed to get through it without reading most of it (last year I just read the whole thing), and I think that was much more engaging and interesting for the audience than listening to me read my story. I had them imagine what it was like to be psychotic, with specific examples of a lot of different scenarios I lived through. Some of the things I experienced during my years of psychosis without medication were really unpleasant, and some of them are things I don't discuss here much (or maybe, ever). But I decided to be a bit more forthcoming than I was the first time I gave this speech, and mentioned some things that had happened that most people don't know about.

Unfortunately, this made me a terrified, nervous wreck after I was done divulging it. So I was more nervous afterwards than I was prior to the speech.

On the positive side, several officers (about 6 or 7) came up to me after I was finished to ask me questions, and tell me that they had learned something from what I had said. On Friday, I went to their graduation ceremony, and there were approximately 150 people there for that. The people involved in the C.I.T. training here are really dedicated to the program, and I think they do an excellent job. From what I've heard, our local program is known around the country. There is even an international C.I.T. association that has annual conferences now, and some of our local folks went to that this year and participated.

I am preparing to go to a conference in a couple of days, which is for a national women's organization that I belong to and that should be fun. However, some health issues came up again last night that would be very problematic if they occurred during this trip.

Basically, I had an episode last night of the same thing I ended up in the emergency room for several months ago. It was not the first or second time this has happened since then, either. I really felt like I might die. It sounds silly, I know, but when your heart is beating too fast, and your brain feels like it's throbbing because you have a horrible headache, and you're short of breath, and you're weak and your tongue, face, arms and legs start feeling numb and tingly, and you feel dizzy and like you are gong to pass out and you're really anxious, it can feel like you're dying. I almost called 911, because I was so afraid that I was going to have a heart attack. But I kept remembering the crappy attitude of the nurse I had the misfortune of meeting during that E.R. visit several months ago, who told me to my face (sans actual evidence), that there was nothing wrong with me, and proceeded to treat me like garbage. I also remembered the heart monitor I wore for two weeks which ended up revealing nothing much important to the cardiologist other than my heart "beats a little fast".

I knew exactly what would happen if I called 911. People would come in, look at all my medications spread out on the living room table, most of which are for mental health issues, and immediately assume I was a psych patient, nothing more. Then, they would test my respiration rate, and if that was normal, it would not matter at all whether or not I felt like I couldn't breathe, because I was probably not really short of breath. This is when someone would call it a panic attack.

The thing is, I know what a panic attack feels like. I have had them before. And that is definitely not what happened last night, or the other times that this has occurred. I don't know if it was a hypoglycemic attack. I do know my endocrinologist has told me I am "pre-diabetic", a couple of times, but never recommended doing anything about it other than losing weight. I also know that my Seroquel dosage is tremendously high, and that this episode happened about an hour after I took my medication for the night, which is also when it happened the last time it occurred.

To further complicate things, I have been diagnosed in the past with Dysautonomia, and specifically Neurally Mediated Hypotension, and my rheumatologist still tells me she's not sure if I have "Mixed Connective Tissue Disease", or just Sjogren's Syndrome without that, or actually Lupus, with the other stuff. The other stuff that's been going on for sixteen years.

When I was 19, I came down with this terrible illness that ended up being diagnosed as Fibromyalgia and Chronic Fatigue Syndrome. I knew right away that it was something more involved than Fibromyalgia, and back then, nobody had ever heard of Fibromyalgia in the first place (and CFS has never been taken seriously by most doctors). I was correct that it was something more involved. This went on to be a battle that took over my entire life for years at a time, when I was really, really, physically ill. Luckily, it was not something fatal.

The thing with chronic illness is, it's often not obvious what is wrong with a person, or even that there is anything wrong. You can look totally healthy and be terribly sick at the same time. This leads to people assuming it's "all in your head", which, of course, becomes all the more likely when there obviously is something in your head that's quite off. So, doctors will blow you off, or misdiagnose you, or assume that you're a hypochondriac. Compared to a lot of people I've come across who have the similar health problems to what I have, I really don't go to doctors all that often. I tend to avoid it, based on past experiences of medical ignorance that was not remotely helpful, and also based on my frustration with never getting a final, definite complete diagnosis.

I know I have Fibromyalgia, which doesn't really even bother me compared to the other problems, and Hypothyroidism, for which I take two medications. I have arthritis in the cervical spine, which was diagnosed over ten years ago. I have a vestibular disorder that was diagnosed sometime around 2004 by a neurologist. I have peripheral neuropathy, that was diagnosed a few years ago at the Mayo Clinic. And I have Sjogren's Syndrome, that was first picked up on by an eye doctor in 1998 or 99, which can lead to numerous other problems.

So there is that stuff. The thing is, I do not have the desire to spend all of my time going to doctors, reading medical research and demanding all sorts of tests. I do my best to take care of myself, take the medications that seem to help, and visit doctors regularly. That's enough for me.

I do not have the financial ability to see tons of doctors and get tons of tests, so that's not really an option. I went to the cardiologist, because it was recommended by the E.R. doctor, and because I was having chest pains all the time. She recommended that I stop taking the diet drug, Phentermine, which the endocrinologist had prescribed. I did that, and I thought it helped relieve the chest pains. But then this happened last night, and obviously there is something else wrong.

This stuff gets old. Being sick can be really depressing, and I have to remain focused on things that don't make me want to lie down and die, so I try not to focus too much on being sick. Then something happens, and you can't function. What to do? I don't really know. I do know that no chronic illness is helped much by trips to the emergency rooms. Been there, done that. Wasn't worth it. So, I'm crossing my fingers and hoping that I don't have another one of these episodes in the next week.

I've decided to cut back on the Seroquel, because I'm pretty sure that it is part of the problem, and I don't like taking a dosage of something that is so high, no research has been done to show it being beneficial. Also, I do not wish to take 1200 mgs of this drug which is very sedating, when I become so sedated after taking it that I feel I am about to pass out and become comatose. It's not worth the chance that I'll have this kind of episode again. I really want to find an alternative to Seroquel, but there are not many antipsychotics that I haven't already tried. Hopefully my ARNP and I can figure something out.

Sigh. This sounds like such a miserable post, and I really am not miserable at all right now. I hate complaining about my health. In general, I feel like a jerk if I complain about anything. That said, I think that this blog is the one place where I can vent about whatever is going on and there may be someone who understands, who listens, who is not harshly judgmental. I do hope that I can further develop a relationship with my new therapist, who seems like an open-minded, kind person, and perhaps get some benefits from talking to him in the future.

It's later now. I had a break from writing this post. Now that I've come back to finish it, I should note that I'm not having a health disaster tonight, and feel okay. That is a good thing. I am not going to worry about it happening again.

I am also going to buy one of those blood sugar monitors to test and see if I have low blood sugar, should such an episode occur again. I had nothing in the house with sugar in it last night, except freeze pops I had bought for my sister when she was saying here, and a banana. I ate those to see if I would feel immediately better, which would indicate a blood sugar issue. I didn't feel immediately better, but I did feel better about 40 minutes later, so I'm not sure what that means. I've read that a person who is pre-diabetic should test her blood sugar to monitor the situation, and that seems like a good idea.

So, goodbye for now. I will probably not write another post for the next week or so.

Check out Chantal Kreviazuk's version of "Leaving on a Jet Plane"; I love it!

P.S.: If you have a blog, or know of a blog that would be eligible for the Choose to Live Award, please shoot me an email at jen.evolving at gmail.com.

Tuesday, June 22, 2010

the sun came up, and I opened my mouth today (Crisis Intervention Team Training Day)

"Well the sun is surely sinking down,

but the moon is slowly rising.
So this old world must still be spinning around"

-from "You Can Close Your Eyes", James Taylor

So, today was good. A bit of chemical maneuvering and an accomplishment. For the chemicals: I got my Wellbutrin prescription corrected, so I'm on the right dosage of the correct type now. I got the Risperdal injection yesterday - since I didn't go to get it done on Friday when severe depression had a hold on me. I also got my endocrinologist to prescribe potassium, because he told me my potassium was low on my last bloodwork done in his office a few weeks ago. Low potassium, it turns out, can cause a lot of heart related symptoms - chest pains, weakness, dizziness, etc...that I have been experiencing for months, and I suspected after doing some online research and remembering when I was hospitalized for severely low potassium some years ago - that getting some potassium to replace what's missing might help me.

On to the important news:

I spoke to approximately 50 law enforcement officers for our local Crisis Intervention Team (C.I.T.) training this morning. I was very nervous, as it has been a year since my first experience doing this, and I wasn't quite sure I had done a great job that time. However, I decided to forget reading the speech, and to, instead, just glance at it when necessary, and talk more frankly and personally, to engage the audience this time. I also described specifics of what it is like to be psychotic, and things that happened to me with my senses when I was experiencing perceptual problems. This seemed to be far more interesting to people than it would have been for them to hear me tell a brief story of my life.

I tried to use a bit of humor as well, and most of the audience laughed a few times. I introduced myself by saying, "Hi, my name is Jennifer, and I'm not an alcoholic. I'm also not a serial killer, even though that image is usually associatd with the terms schizoaffective or schizophrenic." Or something like that. And they laughed.

I can say right now that I feel I did do a good job today. I was very pleased with the police officers' reactions to my speech this time. They asked questions. Several came up to me during the break in-between speakers to ask me specifics about what it was like to hear voices and experience other things I'd talked about. They told me I had courage, that they admired me, that I should be proud of myself. Most importantly, they told me I had helped them to understand mental illness a great deal more than they did before. One said, "You opened a window for us into what your illness is like". That was exactly what I was trying to do.

And so, after a relatively distraught mood this past week, I feel a little better now, because I did do the speech, which is a way of doing my part to combat the stigma that surrounds mental illness, and educating the public, but most importantly, educating police officers so they might have a better understanding of how to deal with people in psychotic states or other crises. C.I.T. saves lives. This has been proven in research.

If you're not familiar with C.I.T., you may want to check out Pete Earley's book, Crazy: A Father's Search Through America's Mental Health Madness, which describes how C.I.T. was first developed, and also why it's needed and how it helps. For one thing, it prevents people with mental illnesses from being unnecessarily arrested when they need help and not a jail cell. For another thing, it prevents shootings, suicide-by-cop, and other forms of suicide. The C.I.T. program in Pinellas County, Florida, where I live is held two times each year, for one full 40-hour week. One part of one day of that week is set aside for two consumers (ie, people with mental illnesses), and one family member of a consumer to speak about their experiences. On the last day of the week, there is a graduation ceremony. I posted pictures here last year from the graduation ceremony of my first time being involved. I first heard of C.I.T. a few years ago, and wanted to participate in it right away. There are C.I.T. programs in many cities across the United States, like Houston. And NAMI (the National Alliance on Mental Illness) which organizes many of these C.I.T. programs, has useful information on its website and an email list you can sign up for to get news about the program. There is also a Florida C.I.T. program model available online. If there is no C.I.T. program in your area, you may want to contact your local NAMI chapter (if there is one) about starting such a program. It is a very helpful use of one's time.

This morning, in my speech, I talked about things such as taking a car that was not mine, and some really bad situations that I was in, which I did not discuss the first time I did this presentation. One of the other speakers said that this is why I was so nervous afterwards, and I think she was right. I felt like I needed to flee the premises and was going to have a heart attack. But I'm okay now, and as I go to bed, I want to leave this post with the thought that the downs do go back up, the sun eventually returns, and there are ways to make living worthwhile even in the dark times when one feels hopeless and helpless. I think, to some degree, you have to create hope.

.....and you can close your eyes....

I'm off to bed

Friday, June 18, 2010

down in the doldrums

I'm not completely sure what the problem is, but I seem to be getting (or have gotten already) extraordinarily depressed. At first, I thought it was just exhaustion. I am usually off on Fridays, and every so often I am so tired by the end of the week that I sleep a lot on Friday or Saturday. It's not laziness; it's usually just fatigue. I have been diagnosed with so many different things, but the underlying physical problem I've had for a very long time is fatigue.

However, today this feels a lot more like depression than just fatigue. I have so many things I need to be doing, yet no desire to do any of them at all. I have no desire to talk to anybody. I was supposed to get together with a friend, and instead of calling her to plan that, I did nothing. I don't feel like going anywhere. I don't really feel like I can deal with my life. Normally, I would have the self-discipline to work on my online courses, as I am taking two of them, and I am behind on the work for both of them. My plan for the day was to do a lot of coursework, not sleep or lie on the couch trying to forget the world. I failed at accomplishing anything, which, of course, makes me more depressed and angry at myself.

Another bad sign is that I ordered pizza. When I was totally psychotic and miserable and not functioning, and had no car and no real friends, I used to live in the room I rented in Virginia and spend a lot of days - even weeks, where I never went anywhere. And for some reason, I got into a habit of ordering pizza, instead of taking a cab to the grocery store. So I would live for days on nothing but pizza and Diet Coke. That was seven years ago. Today I feel like that person again. I don't even drink soda anymore, normally, and I'm supposed to be watching what I eat, but I ordered pizza and Diet Coke instead of getting out and going grocery shopping. Once in a while I'll have a scary day - usually on the weekend - when I'm totally not my regular self. This is one of those days. I need to get out of this abyss quickly.

I believe part of the problem is my medication. Oh, incidentally I was supposed to get my Risperdal Consta injection today, and for the first time in years, I did not get to the community mental health center to do that. I always, always do that on time. Today I didn't feel capable of doing it. And for some reason, when I got my Wellbutrin refilled this time, I was given plain old regular Wellbutrin, instead of the XL kind that I'm supposed to be on, that I've been on for years. I called multiple times this week to the mental health center and tried to get this straightened out. I called the pharmacy; they said to talk to my doctor. I called my case manager, who said she'd talk to my doctor and get it straightened out since I normally cannot get through to the main number at the mental health center as they always have a busy signal and no one answering the phone. Anyway, I never heard from the medical assistant who was supposedly going to help straighten this out. That is who the mental health center appoints to deal with people as you can't actually talk to the doctor herself. So no one ever called except my case manager, who said that the medical assistant should be calling me.

It's been a few days now, and I've been on the wrong kind of Wellbutrin. One thing I know for sure is that Wellbutrin, the way I normally take it, which is 450 mgs of the XL version, works for me. It is definitely not working right now. I know people are busy at the mental health center. I realize that they do not have enough staff to deal with all the consumers there. I understand that the doctor must have made a mistake when she wrote my prescription. But, this kind of thing is really not acceptable. If it's at the root of why I'm so depressed right now, then it's having a major impact on my life.

If I could afford the co-pays, and get off the injections, I'd definitely go to a private psychiatrist, where I might have a better chance of getting in contact with the office when necessary. But I don't have the money for that, and I've been on these injections for a long time, so I can't simply try an experiment and stop getting them. Now, I have to go first thing on Monday morning and get the shot. This weekend is bound to be difficult.

When the pizza delivery guy came, I opened the door, because normally I don't get a lot of unplanned visitors, ever, so I knew it was him. And I went outside so the cats wouldn't get out and signed the receipt. Just after he left there was a commercial on TV saying how you should never open your door to strangers. I immediately thought that the commercial was a special message to me, and had to talk myself out of that, and then ended up crying because it was so confusing and because I'm so sick of this crap happening, and because I was doing well without these thoughts for the past few months, but they always, always come back. In the past hour it happened several more times.

The fact that I had to stop seeing my therapist (another result of going to the community mental health center for treatment), a couple months ago, has also had an impact. I used to use my therapy sessions as a way to affirm what is real, versus what is not, if I was having this kind of thought again. Right now there is nobody I can really have as a back-up plan like that, to help me sort through the annoying brain messages. One thing that my therapist and I figured out was that by the time it's the day for me to get my injection, I really need it. The effect definitely wears off by the time two weeks have gone by, and my symptoms have often returned at this time. I know this. Yet, I didn't get dressed today until it was time to open the door for the pizza delivery guy, so obviously, I didn't even come close to getting to the center to get my injection. This was very stupid.

I have also been doubting that my plans for the future are good ideas, and especially thinking that my plan to go into the social work program at a local university next year is a good idea at all. I feel right now that I would not even want to be a social worker. I feel like I will never get through college anyway, so it doesn't really matter what kind of degree I try to get. I could have graduated with my A.A. this summer, but I chose to get more credits so I could enter that social work program instead. I no longer think that was a good idea, sometimes. The problem is I'll have to move to go into that program. I can't drive my beat-up car to that university several times a week, because the car is just not that reliable. So I would have to move and leave behind my entire life in this area to do so. That would not have to happen right away, but it would be a year from now, and I have to plan this out far in advance. I feel terrified when I think about moving. This would mean having to start over at another community mental health center, which could very likely be far worse than the one I go to now. I would lose my case manager, who I've been connected to for five years. I would have to change my entire life. It's not as simple as wanting to move, getting up, and going somewhere. I have to think of a way to find an affordable apartment. The place I currently live in is owned by a mental health housing agency, and even though I don't get discounted rent, I do have affordable rent here. I have no idea how I will find an affordable place again. It literally took ten months on a waiting list to get into this place, while I was living in a group home. If you're not bad off enough to be in a group home or a hospital or something like that, normally you can't get an apartment owned by a mental health agency in the first place.

But, all this said, I do not think that I will feel this depressed forever. I may feel much better tomorrow, or at least next weekend, after I get the medication issues straightened out. I think I will force myself to do my classwork by Sunday night when it is due. I might not accomplish much else besides that, but I will do that. I have self-discipline. I'm not a lazy person. It's just this great, big muddy that is the problem. Down in the doldrums for right now. But it won't be this way forever.

Wednesday, June 16, 2010

in solitary (feeling alone, separate, and not measuring up)

"All alone is all we are."

-Kurt Cobain

"This loneliness is just an exile from God."

-Anne Sexton

"We are all sentenced to solitary confinement, inside our own skins, for life."

-Tennessee Williams

"The healing comes from letting go and acknowledging that we are not alone; we're all interconnected."

-My friend Kate

Recently I went on a sort-of vacation. Last week for five days. Several family members from Baltimore came down and met with me and some family members here in Florida, at Disneyworld. I can honestly say, I did quite well throughout this trip. I am very wary of going to theme parks like Disneyworld, due to numerous horrific experiences at such places in the past. Many times, I have tried to go a store, such as Walmart or Target, and ended up having so much trouble with all the stimulation from the noises, the lights, the crowds of pushy people, the smells, the stuff, all that stuff.....I just couldn't handle it. I would start hearing things, the delusional thoughts would act up, I would panic, and I would need to leave - immediately leave. Taking that into consideration, you can probably imagine what a trip to a noisy, smelly, over-crowded, brightly lit-up, busy place like Disney would be like, where you have to walk for hours and hours and wait in long lines, and sweat in the 98 degree weather. My issues are not just psychiatric. I don't talk about it often here, but I have some serious physical health problems, and my body is not in the kind of shape a body needs to be in to spend four days walking and standing non-stop all day long.

All that said, I did quite well. I didn't have a lot of auditory or any visual hallucinations. I didn't pass out from heat and exhaustion or anything. I didn't need to immediately leave - until it was later and I got really worn out, but by that time most everyone in the group was also ready to leave. I got to spend time with my grandmother who is 81 years old, and whose husband passed away just last year. It was really great to be able to see her and I didn't care what rides I went on or shows I saw. I wanted to avoid the inevitable family conflicts that come up on trips to Disneyworld, and just hang out with my Nan (grandmother). So that's what I tried to do the whole time. She had not been down here to visit in at least 15 years. I don't know that she will ever be back. I do not have the money to go to visit her much, so it was important to spend time with her.

It has been hard dealing with some of my family issues over the years. I really lost my connections to most of my relatives in Maryland ten years ago, and never repaired them. I think after I became homeless and was living in a homeless shelter minutes from where I had dozens of relatives with homes, I began to deeply resent them for not caring or offering to help (other than my grandparents, who did help). Then, I became delusional, and I destroyed my relationships with numerous people because of the delusions. That will never be something people forget. It has been hard to even explain it to my grandmother, to apologize, to make her understand I am not some evil person who makes up lies about her relatives. I was sick. I am sick. I have an illness that affects my brain. And it's really not my fault. I never would have said the things I said about people if I didn't have the honest belief that those things were true. What I believed turned out to not be true, but I had no way of knowing that when I was drowning in delusions.

I am very sad to this day about how much my mental health, and also my physical health and the financial status that comes from being disabled has separated me from many family members. They also do not agree with me on anything political (99% of them, anyway), and I suppose that is part of the reason why I never hear from them. My sister and brother never hear from them either, though, and so I don't really blame it all on my own issues. Many families are dysfunctional. Mine is not immune. I hardly have any relationships with my relatives up north anymore, and I sometimes wonder why that is. I'm not completely sure. I know part of it is my own fault, but, in all honestly, I don't think the majority of them could care less whether I am dead or alive, and I've felt that way for many years now.

However, my immediate family lives in Florida, near me, and with those people I am much closer than with extended family members.

One of the things that comes to mind when I consider my extended family is how much of a failure I look like, compared to them. At least on paper. I have no spouse - not even a boyfriend (haven't had one of those for over two years). I have no children, unlike most of my cousins who are close to my age. I cannot work full-time, and do not have a career. I have not finished college, and won't be finishing any time soon (accept for my A.A. degree which doesn't count for much to me as I've been working on that 2-year degree for 15 years). I don't own a home, or even rent a nice home. I am grateful and happy that I do have a home I rent, though it is in a really poverty-stricken, lousy neighborhood, and I would never invite most people there. It is known that I have a mental illness. Also, I think many of my relatives assume I'm a lesbian, because I'm a feminist (but this does not really bother me as I have nothing against gay people and it's not my problem if homophobic folks have assumed that I am gay and therefore evil).

What it all boils down to, at the end of the day is, I'm ashamed of how I live. Ashamed of my status. I do not measure up to my cousins or other people my age who I respect. I have not achieved a lot of the things people are supposed to achieve to fit into some kind of acceptable status at some age in their lives. Sure, I have been through hell. But nobody really knows about that. The people I'm related to have no clue what I went through, and probably wouldn't understand it if they did. It wouldn't serve as an explanation to them. I guess, even to myself, it does not always seem like an adequate explanation. I get angry at myself. I am ashamed of myself. I get incredibly lonely, and I know that I may be that way forever, because I'm surely no good at making friends, or at dating people.

On top of mental and physical illnesses, I have this weight problem now, which makes me feel quite ashamed. I always get angry at the societal expectation that women must reach some unattainable standard of beauty and thinness, but even as I resent that message from society, I have internalized that message for most of my life. I do not like being fat. I hate it. I hate the fact that I am not attractive anymore - in my own opinion, and also in the opinion of others, such as my ex-boyfriend who told me multiple times that I was no longer attractive after I gained weight (nice guy, I know). I wouldn't dare to even try to meet someone for some sort of romantic relationship. That is truly ironic, considering that when I was completely psychotic I had dates all the time. I had a couple short-term boyfriends. I was thin then, and attractive. Those factors somehow outweighed the fact that I had no sanity.

I even had a boyfriend who was great, who I really liked, even though I only knew him for a few months. I was living in this horrible situation, renting a room in a house with an ultra-religious weird woman out in the boonies, where there was literally nothing within walking distance. I had no car. I had no job. I did not know I was psychotic. I was totally delusional. And yet, I had this bright, really bright, and very kind boyfriend. Who, of course, I lost. Because of my illness. Sometimes I look back on things like that and wonder, "what if?". What if I wasn't psychotic at the time? What if I had managed to live as a fully functional human being at that time? What if I was diagnosed and medicated before I met him? What if I never became obese, and perhaps someone like him would like me again, now that I have my sanity back? What if? Considering that this highly educated person would go out of his way to pick me up to go places when I was clearly not all that mentally stable and not succeeding at anything at all, I can't help but wonder how much better things might have gone if I had met him when I was doing well.

Of course, living in a world of what-ifs doesn't accomplish anything at all. I will never be somebody else who I wish I was. I think I can become a better person, who I would rather be, but I can't trade in this body and this brain for somebody new, who would be so much more likable. I think, most of the time, that I'll be really alone for the rest of my life. I don't think with all the medications I take that I could have a child, even if I had someone with whom to have a child. I couldn't go off the medications because I'd end up a suicidal basket case again, for sure. I couldn't risk a child's life by having it develop itself on 1200 mgs of Seroquel every day and a shot of Risperdal every other week for nine months. Who knows what that would do to a kid? No one really knows. Research has not even been done on that.

So I'll never be somebody's mother. I'll probably never be married. It's quite possible I'll never lose the weight I've gained, and very possible I'll never date anyone again. It's also possible I'll never manage to finish college. I am trying, but it's very hard. I do not have the ease of taking a class and breezing my way through it anymore. I am discouraged by how long it has taken me to get to the point that I am at. I have a hard time feeling like anything I do is worthwhile. I get discouraged. I get depressed. I lose hope.

Two days ago, I met my new therapist. I don't know if he can help much, but I decided to see him and try it out just in case. As much as I miss my old therapist, I have to accept that fact that she's out of my life for good. I cannot see her because of government insurance issues, and there is no way around it. She let me keep seeing her for almost a year without being paid for it. That was amazingly kind. But at some point, she had to say I must see the person who the insurance will pay for me to see. And so it goes. The first person I met with, who the insurance would pay for me to see, actually quit her first week or two at the job. So then I didn't make an appointment with the other person, partly because I've never had or wanted a male therapist, and partly because I'm not sure it is worthwhile to start therapy all over again with a new person. But I did it, after a few weeks went by and it became more and more obvious to me that I was needing someone to talk to and having no one there. On the positive side, the male therapist has a long ponytail, and a coffee mug with a picture of Martin Luther King Jr. on his desk. So I'm hoping that we will having something in common in so far as how we view the world. I had a lot in common that way with my former therapist, and I truly like her as a person, which made trusting her and listening to her advice much easier than it probably would have been if we had no common views on life. This therapist said I can see him every week, to start. He asked me if I wanted to go to a group twice a week and see him the other two weeks, which is sort of what I did before. But I wouldn't be in a group like the one I was in before - which was a "group" of me and one other woman, no one else, and after a couple years, we knew a lot about each other. The groups that are available now are bigger groups, and I am not really interested in them at this time. I know that I can get more work done in individual therapy where I can really discuss the delusional thoughts openly - as soon as I get to know this therapist and I am able to trust him enough to do that.

I think the fact that I went to see this therapist at all underscores something that is lacking in my life: close relationships. I have a close friend who I've known online for 13 years, but she does not share the mental health issues I have, so they are not something I talk about with her, not because she wouldn't care, but just because it's too hard to try to explain it all and I really don't want to be a burden telling someone about my issues when they have their own life difficulties to face. I have another friend who does share a mental illness and lives near me, but her mental health issue does not include psychosis, and so there are certain things I don't think she can understand. I am grateful for her friendship, however, and we get together a couple times a month usually to go to a movie or have dinner, or something like that. Other than that friend, I have no one who lives near me who I ever spend time with, friendship-wise. I've always been an introverted person, as that is just part of my personality, but serious mental illnesses serve as a division often, between one's self and the people around her, who, usually, don't have a clue about her internal world. I think I realized years ago that it's much easier to keep some things to myself - or only discuss them on this blog, or with a therapist - than it is to try to explain it all to someone who has never been there. For one thing, it's hard for other people to understand, and for another thing, I'm afraid of what they will think of me because they don't understand. Also, I don't like to feel like I am being too "negative" and burdening people with information they don't want to know about in the first place. For this reason, many people who know me do not know that I have a mental illness. I wish it was easier for me to share that information, because I do believe that in the interest of combating stigma, we do need to become more transparent and "come out" about our illnesses, to educate the public. However, that is much more easily said than done. And not everyone is interested in me educating them, of course.

I think what I long for, that is missing, is a feeling of adequacy. I would like to feel like I was genuinely likable, and that I wasn't such a failure at accomplishments. I try to feel that way; I try to be confident. It's not really something you can "try" though. You either have confidence, or you don't. Much of the time, I just don't. This is not to say that I have no opinions, or that I never speak up about things that matter to me. I like protests, and writing letters to raise awareness about the issues I care about. I'm not afraid to be unapologetic about those issues. I don't particularly care if people think I'm some wacko liberal feminist socialist, or whatever. Those people don't really know me; their opinions don't really matter to me. But what does matter, what I am missing out on, is the close relationships that everyone is supposed to have according to the possibly mythical societal perception of what creates happiness and what is normal. Sometimes, despite my best feminist intentions, I miss being skinny and attractive and having someone like me. Sometimes I miss being a person who had no psychosis too. Actually I miss that a lot. I miss being one of those people who thought Schizophrenia was related to being a serial killer and not something that would ever happen to a nice girl like me. I miss that ignorance, which, as they say, was bliss. I miss believing that I would be able to do all those things that people expected me to be able to do, because I was intelligent enough to do them, and because I wasn't psychotic then (or if I was, nobody knew it). I miss being 24 and being in an honors program at the community college I was attending, and getting a huge scholarship to go to Smith College - right before I completely fell apart and never got there. I wish I could be that young woman again, so full of promise, hope, and owning such a future that I can only visit in my dreams now.

I'm sorry this post is a bit of a downer. Just the other day, when I met my new therapist, I told him I don't really have a problem with depression right now. But as I write this, I realize, perhaps that was an inaccurate statement. I am not feeling particularly happy. In my mind, though, I associate depression with the real deep depths of suicidal despair I have visited in the past. I don't think of it as being down. I'm not sure that being down and lacking hope mean I have a disease process going on. I'm not sure that it is abnormal for one to feel this way, considering the circumstances. I still get up every morning. I go to work. I work on my classwork. I'm not thinking about killing myself. I guess, really, I'm just lonely.

Do you ever feel this way? I'd love to hear your thoughts. I also want to say, thank you, for coming here and reading this post, or regularly reading the posts here, or just stopping by. I do appreciate very much every person who reads my writing here, and particularly am grateful for those who have left comments or connected with me via email. There is something to be said for strength in numbers, and I continue to learn from you and am happy when someone says they feel less alone because of this blog. I feel less alone because of each of you.

Tuesday, June 08, 2010

the problem of unacceptable side effects when your medication works

God, am I tired. Really, really tired. I recall when I was on 25 milligrams of Seroquel, back around 2002, for anxiety. And then for my "dissociative disorder", they had me on about 200 mgs of Seroquel, and people would say to me in the hospital, "How can you take that and still not be sleeping?" Bear with me for a moment, as I share with you some information from Rxlist:

"Dose Selection—SEROQUEL should generally be administered with an initial dose of 25 mg twice daily, with increases in total daily dose of 25mg - 50 mg divided in two or three doses on the second and third day, as tolerated, to a total dose range of 300 mg to 400 mg daily by the fourthday. Further adjustments, if
indicated, should generally occur atintervals of not less than 2 days, as steady-state for SEROQUEL would not beachieved for approximately 1-2 days in the typical patient. When dosage adjustments are necessary, dose increments/decrements of 25 mg - 50 mgdivided twice daily are recommended. Most
efficacy data with SEROQUEL were obtained using three times daily dosing regimens, but in one controlled trial 225 mggiven twice per day was also effective. Efficacy in schizophrenia was demonstrated in a dose range of 150 mg/day to 750 mg/day in the clinical trials supporting the effectiveness of SEROQUEL. In a dose response study, doses above 300 mg/day were not demonstrated to be more efficacious than the 300 mg/day dose. In other studies, however, doses in the range of 400 mg/day - 500 mg/day appeared to be needed. The safety of doses above 800 mg/day has not been evaluated in clinical trials."

"The safety of doses above 800 mg/day has not been evaluated in clinical trials. "

Drum roll please..................
and my current dose of Seroquel is 1,200 mgs. a day.
Yep, that's right. The highest dose of anybody I've ever met who was taking this drug is the dose being given to me. Meanwhile, I'm still not sleeping more than three hours a morning (never sleep at night anymore). Also, meanwhile, I'm on the highest dosage of Risperdal Consta injections, hence, I am not the least bit psychotic right now. I'm on enough antipsychotic medication to kill a horse, but, the good side is, I'm okay. Mentally. Sort of.

Being unable to sleep is not so much okay. Being unable to sleep leads to mental health issues for everybody. Obviously, I'm not immune. So, being unable to sleep while on this dosage of Seroquel, a drug known to lead to obesity, and Diabetes, is what I am now considering to be NOT worthwhile.

Add to this thought, my endocrinologist told me again the other day that I am becoming "pre-diabetic". Gone is the wonderful weight loss I was so thrilled with last year.

I lost fifty pounds last year. I was thrilled, and ready to lose more, in order to improve my health. This is not because of cosmetic interests or my past history with anorexia. This is because I'm obese, thanks to these lovely medications that have brought me back my sanity and raised my blood sugar, slowed down my metabolism, and caused me to feel hungry all the time, all day long, every day for years.

To wit, I'm sick of this crap. I am really, horribly (and some of this is because of the past history with anorexia), angry at myself that I gained back most of the weight I lost last year. But I'm more angry with these medications, because I know that when I was not on them (as in, for most of my life), I was naturally quite thin. I was too then with the eating disorder active, but I was naturally thin without an eating disorder. I'm not naturally obese. I'm obese because of these meds, and I am really, really sick of being obese.

The way that I lost the fifty pounds was by exercising several times a week and taking the appetite suppressant (which I don't recommend), called Phentermine, that the endocrinologist prescribed in an effort to prevent me from becoming diabetic. The Phentermine contributed immensely to the heart problems I had that landed me in the E.R. one day, and in a cardiologist's office a few times after that day. I had to wear a heart monitor around for two weeks straight, because of this. And so, I stopped taking Phentermine. I should mention that, before I stopped taking it, the endo doc had doubled the dosage because I had started gaining weight again since it had ceased to work for me.

So, sans diet drug, with added mgs. of weight-gainer drugs, I went back to the state of fatness which really doesn't go well in my brain. I am sick of having to shop in plus-size sections of stores where clothing looks much like large trash bags painted various ugly colors. I am of sick a certain family membrer telling me "what happened to you? you look awful!". I am sick of being the fattest person in the room the majority of the time. I once was a person who said, "If I ever become overweight, I will kill myself". And I meant that. I'm not that person anymore, exactly. But some remnants of her are still there, buried under these pounds of unwanted flesh.

I am angry right now. Angry because, when we can come up with the technology to study Mars, send men to the moon, do heart transplants, and provide sex change operations, why can we not, for GOD'S SAKE, come up with a treatment for psychosis which doesn't lead to obesity or other horrendous side effects? Why?? I truly don't understand this, but of course, at the root of the answer is stigma. Because people whose lives are not affected by mental illness don't generally understand or care about mental illness and the needed treatments for it, our government does not fund enough research. I am taking a drug at a dose that has never been researched before. This does not make me feel comforted. And because of this lack of research, not only are there no cures for Schizophrenia or Schizoaffective Disorder, but their are few treatments that work and don't cause obesity.

I've been on the few medications such as Abilify and Geodon that don't tend to cause obesity, but Abilify made me vomit every day for a month the last time I was on it (and I begged the doctor not to take me off it regardless of that fact, honestly), and Geodon gave me such horrible Extrapyramidal Side effects (EPS), that I landed in the E.R. via an ambulance when my body went into uncontrollable convulsions. I refused to touch Geodon after that, ever. But now, sometimes, I actually wish I had not refused to do so, because what if somehow, some way, I could not have the side effects. The truth is I've been on Geodon several times and each time was a horrible experience. It's listed in my files now as a drug I'm allergic to; nobody will prescribe it for me again, unless they don't worry about malpractice suits that come from giving people medicine they're allergic to.

And those two pills are pretty much it, in the world of antipsychotics that don't cause weight gain. To the best of my knowledge, it's those two or nothing. So, I'm left with no options but to take weight-gaining meds at huge dosages required by my brain to get out of psychosis, and so I'm left with these 200 pounds of angry, miserable, disgusting, unhealthy flesh that bothers me to no end.

Maybe the eating disorder remnants are acting up, which would explain why this post sounds extraordinarily desperate, but I really think any average person would be angry if they had to take a medication that caused them to gain 100 pounds in three years, and develop pre-diabetes, all in the name of helping their brain.

I do hope I live to see the day when there is an effective antipsychotic, which can be taken at safe and effective dosages, and do not cause EPS or weight gain. I wonder if that will happen in my lifetime, if enough people will care to make enough of a ruckus to urge the government and pharmaceutical companies (which obviously care about profits, not people) to do more research to find better treatment. Perhaps, if these illnesses were more widely understood, and the devastating effects they can have on one's life were things the average Joe Public cared about, then there would be enough research to find something like a cure.

In the meantime, I'm stuck in this mess, and sometimes I have days where I just want to scream or flush the pills down the toilet and forget it. But not really. I am not a screamer, and I take my pills because they work. My current regimen is a tiny dose of Clonazepam, a lot of Wellbutrin, an obviously ridiculous amount of Seroquel, and a bi-weekly shot of Rispderal Consta. Plus two medications for my thyroid, Naproxen and a muscle relaxer for pain, and Salagen for the dry mouth and dry eyes of Sjogren's Syndrome. And now, sadly also another appetite suppressant from my endocrinologist which, hopefully, might work without causing chest pains and a rapid heart beat.

Unfortunately, even though this regimen works for a variety of things, it doesn't make me sleep. Nothing, it seems right now, is going to make me sleep. It does not matter how horrendously tired I get, how much I do to make myself more tired, etc. I stayed up all night last night cleaning my apartment in between efforts to go to sleep. I never got to sleep until this morning, a couple hours before I had to be at work. So, obviously, I'm tired. Which partly explains why I'm writing this rather angry outburst of a post. Excuse the dramatic tone. Sometimes I just need a release and know no other way to find one than to write.
Edit to this post: I know for a fact that medication can work very well to save a person's life, and it did so for me. Without medication I would not be here. I do not want anyone to assume that my complaints in a post like this are related to some dislike or disapproval of medication. For me, I need the medication to survive. Hence, my frustrations listed above.

Friday, June 04, 2010

Blog award for people who choose to live and combat suicidal urges

I have created a blog award to give to bloggers who have lived through, or continue to live through, periods of suicidal urges, due to any mental illness, addiction, eating disorder, or other problem. This award is meant to send a message to all of the readers of blogs who post it, to say that a person can actively choose to participate in her own recovery and make the choice to fight for her/his life. When suicide might seem like the easiest choice, or the necessary choice, it takes work to stay alive and battle mental illness. It takes work to live with suicidal urges and to live with mental disorders. And, recovery does happen for many of us; things do get better. Maybe we still live with the illness, maybe we will live with it all of our lives, but we can learn to cope with it, rather than succumb to suicidal thoughts and self-destructive behaviors.

Hopefully, seeing this award will offer a ray of hope and sunshine to those who feel hopeless and lost, just as we have ourselves. To have hope is to have everything.

If you write a blog, and would like to recommend yourself for this award, all you need to do is shoot me an email and your blog address, and I will be glad to give it to you, and to list your blog on the award page, which you can see above this post at the top of the page. The same goes for blogs you read; if you would like to recommend someone else's blog for this award, just email me the address to the blog, at evolving2003@hotmail.com. I hope that this statement, "I choose to live", can become, not only a little blog award, but a common, proactive, important statement, that we have hope, and that others can hold on because death is final, and we all deserve a chance to live.
Congratulations to Kate Kiernan, the first award recipient!

Wednesday, June 02, 2010

my brain and the world it lives in

Hands Across the Sand: Feb, 2010
Clearwater Beach:

Perhaps you heard, there was a flotilla (bunch of ships) headed towards Palestine a few days ago, which was stopped and attacked by Israeli soldiers. According to most of the reports I've seen, the people on the flotilla were unarmed. The soldiers weren't. A bunch of the people on the flotilla ships are dead. Some more were injured. Unless there is something I have not heard about it yet, none of the Israeli soldiers were killed. This is, to me, yet another entry in the ongoing "But, I was here first!" saga of the middle east. Remember when you were a kid and your brother or sister would hop into that front seat before you could get there, and you said, "Hey, I want to ride up front!", and they said, "No way! I was here first!".

That kind of sums up the situation between Israel and Palestine to me. I mentioned a few months ago, when Ribbit the orange bully cat came to live here, that my couch had turned into the Gaza strip. Spooky, the heavyweight who really was here first, was called Palestine, and Ribbit was Israel. At the time, I thought this was an accurate description, but it's not anymore. Reason being, Spooky doesn't really ever fight back. She doesn't even do anything to piss Ribbit off, unless you count the fact that she likes to eat and likes me to pet her once in a while. If it were up to Ribbit, poor, fat old Princess Spooky would be starving and would never receive any attention at all. In fact, when he catches me petting my poor princess, he jumps on her, takes a big bite out of her back, and chases her across the apartment when she runs to a hiding place. Poor Spooky. She has claws, and Ribbit's front paws were removed by his former mom (my ex-sister in law), so one would think she would take a scratch into his face in her own defense. But she rarely does that. Spooky is a true pacifist, and unfairly victimized.

I'm in an ethics course right now, online, as part of finishing my A.A. degree (which would have been done by now if I did not change my major to Social Work). Much of what we are studying is about power. Whether or not people as individuals have rights that overrule the rights of the majority or vice versa, whether or not it's fair that humans have ownership over the earth and use that power to pollute and destroy it, whether or not humans should have power over all other animals, just because we're higher on the "food chain", etc. One blatantly obvious example of humans' misuse of power can be seen in the Gulf of Mexico, which is just a couple miles from my apartment. Corroded in oil from the worst "spill" (ie, disaster of unbelievable proportions) of all time, who knows when it will be clean and back to normal. We need fossil fuels, so, the "drill, baby, drill" crowd says, it's alright to drill near shores or away from shores, because we have that right. Who cares if we destroy the water!

Back in February, I think, I participated in an action called "Hands Across the Sand". This protest was planned on the internet and particularly on Facebook. People all over the state of Florida went out to the beaches, wearing black clothes, or black garbage bags over their clothes, and for fifteen minutes, at the same coordinated time, all around the state, we formed lines on the shore and held hands. It made for some awesome photographs. I was happy to participate, and there were a couple of people I know there as well. That was before BP made it's little "spill". People were wise to be worried that such a thing would happen. I wish we hadn't been correct in foreseeing such a nightmare. I wish it never happened. But this is one of those times when some can say, "I told you so," because, well, we did. Even the mayor of Clearwater, who is a conservative person politically from what I understand, was there and wearing black and speaking to the crowd. There was an airplane with a banner behind it that said, "Love tourists, not drilling!", and everybody cheered when it flew by. I am glad I went to the beach for that experience.

Why am I talking about any of this? After all, it doesn't seem to relate to this blog much. I'm getting to that. So, I haven't been able to sleep lately at night.
I am totally exhausted during the day, and then the night comes, and despite taking enough meds to put an elephant into a coma, I can't sleep. I was at my endocrinologist's office yesterday (Tuesday), and I said, I haven't been sleeping and I'm really tired. He said, "Do you want a sleeping pill?" Well, actually, no, I said. I'm already on a few medications... "Are you on something at night?" Does this guy ever even glance at my chart?, I thought. Yes, I'm on Seroquel and one milligram of Klonopin at night. "Do you want to take another Seroquel?" What is with this drug pushing? I wondered. Actually, I said, I'm taking 1,000 milligrams right now already. "Oh!".

Yeah, it's pretty clear, if you're familiar with medication and dosages that you don't dole out more than 1,000 milligrams a day of Seroquel unless you have a really, really good reason. I have met one person who takes more Seroquel than I take. He takes 1200, I think. And when I first heard that, a couple years ago, I thought, "WHAT?". Because, really, most people don't take more than 800 milligrams, tops, of Seroquel. Little did I know then, 800 wouldn't keep working for me forever. So an increase was required. But that's because of psychosis. Not because I can't sleep. Seroquel is an antipsychotic, not a sleeping pill.

But why don't I want a sleeping pill? I think, every so often, about my liver. I envision it being corroded as the Gulf of Mexico, as if I'd been smoking and drinking for 50 years on a daily basis. My liver has gone through a lot. I never smoked even once, and I never drink, but I take a hell of a lot of medication, and have, for a long time. I take only meds that work for me, and only because, without them, I can't function much. But I don't want to take more. I want to take less. I don't enjoy being a walking pharmacy. And I've gotten a little tired of mentioning something to a doctor, only to be told instantaneously that the only solution is another pill. What if I don't want to ingest another pill that may have side effects nobody can even foresee now since no research has been done on somebody taking all the meds I take for all their life. The meds haven't all even been around long enough for that kind of research to take place, especially Seroquel.

So, what to do? Most likely, when I go to my psychiatric A.R.N.P. the solution will be that she'll prescribe another pill. And, after a month of only sleeping 2-4 hours a night, I'll take it. Because I'm really tired, and I'm really not able to function well when I'm this tired, and I really, really want to be able to sleep. I don't like the idea of another medication at all. But nothing else seems to work. In the past, when I thought there was some other solution available, I tried Melatonin, and Valerian Root, and other herbal things, and drinking tea, and I cut out caffeine, and I took large dosages of Benadryl. Nothing ever worked. When I can't sleep, I really can't sleep. This has been going on ever since I went off the Anafranil that I had been on for the past several years. I'm glad to be off Anafranil. It's an outdated antidepressant that I was only taking for obsessive-compulsive issues, and it didn't work well to help with them. It also causes weight gain, so that was a major reason I wanted to stop taking it. So, I am glad to be off that. The first thing the community mental health center staff person said, when I called a few weeks ago to report that I could not sleep, was, "go back on the Anafranil." I refused. So I haven't slept in as many weeks hardly at all.

This stuff gets old, but it's not the worst thing in the world. I am well aware that I could have far more problems going on then this. In fact, there are some other things occurring. I finished, happily, the last semester at school with good grades. But as I focused solely on that, I got to be more, and more, disorganized, and fell behind in housework. Then the summer semester started. I never caught up with the disorganization issue. Now, I find myself depressed and feeling like it's all out of my control, because there is not enough time in the day to do the stuff I need to do, and because of that feeling of being paralyzed that comes with depression. It's like you can't do things. I know that not being able to sleep is at the core of this entire situation. Hopefully it will be resolved with the next medication. I was doing perfectly fine, for a while there. I still am doing okay with the psychosis stuff. Not having much of a problem with that. It's there, of course, as it's always there, but it's not bad enough to be worth going into it here at the moment. What's happening are little things: a vision of something that isn't really there for a moment that disappears quickly, smelling cigarette smoke when somebody smokes on television (weird, I know), hearing something that may or may not be really said. The little things that indicate caution. I drive by this construction area on my way to work, and these poor guys have to stand there, in the hot, Florida sun, all day, holding these signs that say, "stop", on one side, and "slow", on the other side, to direct traffic around the workers. I envision somebody holding these signs up in my head. "Slow", it says. Proceed with caution.

I think a major issue contributing to these problems is simply that I have no therapist anymore. My former therapist was wonderful, and she really helped me keep track of what was going on with my brain better than I can by myself. She did a great job with that, and I didn't realize at the time how lost I'd feel when she was gone. I simply assumed I'd be able to keep seeing her. Such, when money and the government are involved, is not always the case. I am supposed to make an appointment with a new guy, that will actually be paid for seeing me if he has openings available, but I haven't been feeling too interested in starting the whole story of my life over with another person. The first new therapist I went to, after my former one couldn't see me anymore, was this woman about 22 years old, who quit right after her first week. She actually spent my entire appointment typing things, which was odd. And then she was gone, which was not disappointing in the least since I had no desire to see her again. Maybe the new guy could help. I guess I should give that him a shot.

I wish that I could go off all medications. I wish I did not have to worry about the effects they will have if I am still alive 20, or 50 years from now. I feel sometimes an innate desire to protect myself, to draw a line in the sand like we did at our beach protest and say, "No more". But I look back on my life before I had the proper meds, and I know that the hellish nightmare I lived through for years is not something I am willing to go through again, just for the sake of not being on medication that makes me obese and corrodes my liver. We all have to make choices; sometimes they are not easy. I am grateful that the medications work as well as they do.

On an unrelated note: I've been working on adding some new pages to this blog. If you look at the top of the screen now, there are pages on suicide resources, what this blog is about, and combating stigma. I'm going to be adding more in the near future. If you have any suggestions for things that might be helpful to people who come by here, please let me know. Thanks.