Tuesday, August 30, 2011

Bigotry comes to visit my workplace. Enough with the stigma already.

So, today I'm at work doing my usual phone-answering duties, and some student calls (I work at a community college), to report that there is a strange "girl" (she's probably a woman if she's in college, but whatever), in his class who is bothering him. Hmmm...okay. So I ask him what the problem is and what kind of assistance he is seeking from the college. He proceeds to go on a 10 minute (yeah, I counted) tirade against people who have mental illnesses. He says this woman argued with him *(wow! imagine a woman thinking she had the right to argue with you) about something he said in class, and then on another day she interrupted him while he was talking to his professor to tell him that he was incorrect about something.

Wow. Scary stuff. The guy says this "girl" is "unstable" and "obviously probably mentally ill, Bipolar or something", and he is afraid, yes, afraid that, "she could kill me or something, I mean, the way she LOOKED at me!". Okay, now here I am, a person with Schizoaffective Disorder who has a sibling and a parent with Bipolar Disorder, and I have to be polite to this jerk because I am at work.

He goes on to state that when she argued with him he almost told her, "Why don't you go home and take your meds!", but he refrained himself. I didn't refrain myself here. I said, "Well that would have certainly been a rude thing for you to say." He is expecting me to be more sympathetic to his obviously dangerous plight. I'm not. He says, "WELL SHE WAS RUDE TO ME!! AND THAT'S NOT RIGHT!!" He rambles on about how, "You know how people like this are, they're not right, they're off balance, they could do anything." And he tells me this: he reported the student to security on campus.

What? Why? Well, you see, his professor had announced to the class that two students in the class needed accommodations for a disability. Probably, they needed a notetaker, which is the only reason such an announcement would ever be made to the class. The students names would never be divulged in such an announcement. But this guy has assumed that the "unstable girl" is one of the disabled students. You mean, I ask, she has a disability? I am trying to put this back into reality-realm here. A mental illness IS a disability, and if in fact she has a mental illness, she has every right, not only to attend college, but to have all the reasonable accommodations to which she is entitled under the Americans with Disabilities Act. I didn't go into all this with this guy, but I did tell him, "The fact that someone was rude to you does not mean that she is mentally ill or that she takes any medication."

I then sought to get him off the phone, informing him that I couldn't help him, and neither could anybody in my department, as far as getting into a new class, because it's too late for that now, unless you go through the office of the program director and they somehow allow you to do this. He says he's sure they will allow him, because, "they have to!" since he shouldn't have to be in a class with this supposedly dangerous young woman. I give him the program director's phone number, and get him off the phone before I lose my cool. He is a total jackass.

Two minutes later, jackass calls back. He says, "I just called the program director and she didn't answer. It's after 5 PM, I say. She is probably gone for the day. He then goes on to say, "I don't think you really understand where I'm coming from and how serious this issue is, and I mean, I shouldn't have to be MISTREATED in my class!"

This class, incidentally, is an ETHICS class. And I wonder what the ethical implications are of someone trying to remove himself from a class just because he doesn't want to be around an outspoken female who he is assuming has a mental illness. Last time I checked, those of us with mental illnesses are still allowed to be in your class, thanks. Last time I checked, I don't need to be reported to security if you find out that I'm on medication, thanks. Last time I checked, there were not a lot of people with Bipolar Disorder or Schizophrenia or any other mental illnesses shooting people in their classrooms in college. Yes, I know about the incidents that have occurred, but generally, those people are sociopaths, not Bipolar and often not Schizophrenic, and generally, they don't occur very often considering the number of college campuses in this country.

The guy wasn't just sexist though. He was a real bigot against people with mental illnesses. He proceeded, during the original conversation, to try to convince me to agree with him by telling me about a student who "got kicked off campus", and how there were "signs up with his face on them all over campus saying that he should be reported to security if you see him on campus." I saw those signs myself. I assumed, and I'm pretty sure I'm correct, that somebody - most likely a female somebody - had a restraining order against that guy for domestic violence and that was why he wasn't wanted on campus. But this guy assumed, "He must have been Schizophrenic!" He said, "I SAW that guy on campus and HE LOOKED WEIRD! IT WAS OBVIOUS THERE WAS SOMETHING WRONG WITH HIM!"

And I'm thinking, "It is quite obvious to me that there is something very, very WRONG with you and your bigoted, hating brain, and that you are the most disturbed person I have talked to recently." But I am at work, and I cannot say things like that if I don't want to lose my job.

So I come here, to my trusty old blog, to tell a few friends who might understand how aggravating this was. The worst part is, the guy had my name, so I couldn't even tell him off and hope of nobody hearing me, since he could simply report me for it, and the way things go in my workplace, I would have gotten into some definite trouble for that. If I was an African American person, perhaps, and somebody called and talked to me about all the black people they hate in their class, maybe I could have just hung up on them and not gotten into trouble or lost my job over it. But I'm just a person with a mental illness, and the world has yet to truly understand the stigma that enshrouds our lives.

If only there were classes that were mandatory at this college which taught people about bigotry. I happen to think such classes should be mandatory at every college. I took a class called American Pluralism years ago at a different school, in Maryland, and I loved it. It was a wonderful class about racism, sexism, homophobia, and classism. Disability rights should have been in there too, though. And a class with all those issues is needed at every campus because, if we are truly going to educate people, we have to start with educating them that the person who is sitting at the desk to their right or left is an actual human being, worthy of breathing, and worthy of being in their classroom.

I should also mention that, because I get paranoid, I was thinking that perhaps this was a prank call by someone at school or at work who knew me or knew of me and the fact that I have a mental illness or I get disability accomodations, and they were trying to get under my skin. If it was, then, it didn't work, because they might have gotten under my skin but that's only because they are ignorant idiots. I will soon be doing a volunteer internship at a mental health treatment center, for one of my classes, and I am looking forward to that as well as looking forward to continuing volunteering, when I have time (which is rare these days) with the National Alliance on Mental Illness, to combat such stigma wherever and whenever it occurs.

Sunday, August 21, 2011

When psychosis complicates your medical problems: gall bladders, tomb babies, livers, and meds

About a week ago, I started getting this terrible abdominal pain. It lasted about 12 hours, and was really severe pain. I didn't want to go to the emergency room after the way I have been treated in ERs in the past when I was there for something they didn't consider serious - like when my doctor sent me there because I had an allergic reaction to Lamictal two months ago and the ER doctor said, "What did he expect us to do about it?". So I put up with the pain. I stayed at work, because my boss now is really picky about people taking any time off for any reason, which really makes things more difficult, because when I had a different boss there, I was able to easily rearrange my schedule for doctor's appointments, and can't do that now. So I called from work, several Gastroenterologists, until I found one that had an opening the next week. I went there, and was sent for an ultrasound of my abdomen, where they didn't find gall stones (which is what I think they were looking for), but did find that I have a fatty liver.

A fatty liver may be common, and may not be a severe problem, but any kind of liver problem is something to take seriously. A liver problem cannot be fixed, in general. They cannot be repaired. There is no treatment for any liver disease other than a liver transplant, if you are very sick with a liver problem. So I was not too happy about this news.

Next week I have to go for another test to see if my gall bladder is functioning properly. See, about seven years ago, I was in a hospital for abdominal pain, and I was given this test called a Hydascan, where it was found that my gall bladder didn't seem to be functioning properly. I was psychotic at the time. Being psychotic really complicated matters. I believed I was pregnant with a dead Illuminati baby that was created in me by rape in a psychiatric hospital, and that was going to kill me if it was not removed. I believed that I was a "breeder" for the new world order, and was being forced by medical professionals to carry this baby in myself, which would be used as human food when it was eventually taken out of me. But I believed, also, that all medical professionals were in on keeping this a secret, and it was not to be talked about openly, which is why they would always tell me I wasn't pregnant when I declared that I was.

I went to pregnancy clinics, including one Christian one, and one abortion clinic during this time, and I went repeatedly to a gynecologist who, in my mind, actually told me I was pregnant, and then also told me I had endometriosis for which he performed a laparoscopy surgery on me that, in my mind, was going to remove the "tomb baby", but of course, the baby was not removed. I didn't think of it as a fetus. I thought of it as a full-term baby, because I thought I had been pregnant for years. I weighed about 105 pounds.

Eventually I ended up in the emergency room complaining of severe abdominal pain. This is where the gastroenterologist came in. First, a stupid doctor who knew I had government health insurance, admitted me to the hospital where I was kept for like five days getting all sorts of tests done. I had a cat scan done, blood work of all kinds, and I met with specialists who performed tests too. I met a gastroenterologist who had me get a colonoscopy, and I believe an endoscopy though I cannot remember for sure about that. Somehow, in my mind, I thought that I needed surgery to remove the baby, and that if I could complain of something that warranted surgery, then the problem of the dead baby that was killing me from the inside would be solved. So I said it was my gall bladder.

The gastroenterologist didn't like me, and didn't take me seriously. But he ordered these tests, and one that he ordered was a Hydascan of my gall bladder. I recall clearly when he told me that it showed my gall bladder wasn't functioning properly. I also recall him telling me he would remove my gall bladder, which probably made me visibly happy. I then recall him coming back into my room to tell me surgery was not needed, and he wasn't going to do it. This made me very unhappy. I needed that dead baby removed to save my life.

After I got released from the hospital, I went to see this same doctor in his office. I clearly remember that he had the nurse come into the room when he examined me, and he said to the nurse, "This is what I have to deal with all the time in the hospital", talking about me. To this I said, "Yeah, I know, that's terrible." And the doctor clearly said, "I was talking to the nurse, not you." The doctor also said that he was not going to remove my gall bladder, at which time I started to beg for his help. I said, "I really need help", and he said, "I know you do, but it's not the kind of help I can give you." I knew he was making a comment about my mind, and I was not too psychotic to understand this fact. I actually recall stating to the receptionist at check-out, "I don't appreciate that doctor saying I need help like that, and I know what he meant by that."

The doctor did one other thing though, which I think was a major mistake. He said, "I'll tell you what, you can see my partner here, who removes gall bladders all the time, and if he thinks it needs to be removed, then he can do the surgery."

Psychotic and desperate, I came back another day to meet with his partner. I convinced this partner that my abdominal pain was from my gall bladder. He said he would remove it, and that this would relieve my pain. He also said something to the effect that he didn't understand why the first doctor was giving me a hard time, when I clearly just had a gall bladder problem. I scheduled the surgery.

The day I went to the hospital for the surgery, my mom was supposed to meet me there, but something went wrong and she couldn't get to the hospital. I was put into a little room, given a hospital gown to put on, and told to lie down and wait. I started getting scared. I remember thinking, maybe they were going to kill me during this surgery. I remember thinking I needed my mom there, and I needed help after the surgery was over, and nobody was going to help me. I got terrified, and I decided I was leaving. I left the hospital. I never saw a gastroenterolgoist again. That was seven years ago. Then, last week, I saw a new gastroenterologist.

It is possible that I had a real gall bladder problem at that time, and that some of my abdominal pain was real, and not in my head. It is highly possible that I was both psychotic and experiencing real pain, at the same time. I will never be able to know for sure. Try explaining this to a doctor, who is not a psychiatrist, the first time you meet him. "Yeah, I have had a Hydascan before, and I almost had my gall bladder removed, but I have Schizoaffective Disorder, and I was undiagnosed with it, and psychotic, at that time, so I really do not know if I had an actual gall bladder problem or not."

This doctor said, "Well, you seem fine to me, now," regarding my mental health, and "okay we'll do some tests." He seemed to be not too taken aback by my statements, but maybe he just covers it up well. I don't know. I don't really care either. I just want to know what is going on with my abdominal pain, and see if anything can be done about it. I want to know if I have a liver disease, and what is causing that. I want to know if gaining 100+ pounds in the past few years from taking antipsychotic meds has permanently damaged my liver, in addition to putting me on the verge of diabetes. And I want to know what I can do about all this.

I'm hoping that I can get off the injection of Risperdal Consta, which has clearly led to me gaining a ton of weight, and the only way that is going to happen is if this new antipsychotic, Latuda I am taking really works well. So far, I can't tell if it's really working well or not. I am stuck waiting for it to really help, although I think it might be helping somewhat, just not in any really noticeable manner. I do notice that I haven't had as many thoughts of people saying things about the Holocaust, or coming to get me, at work, on the phone. But I still have things like that happen, so it hasn't totally gone away. I have old, old symptoms that return especially when I'm stressed out, and right now I'm really stressed out about school. I sometimes hear people say "hello", and think they said, "Holo", as in "Holocaust", as a reminder that a second Holocaust is coming. I sometimes here people say, "Yes sir" and think they said, "gas her", about me, going to a gas chamber. This happened as recently as yesterday, at, of course, a gas station. So while I'd like to say Latuda has worked wonders, obviously, it hasn't or this stuff wouldn't still be happening. I want to continue taking it though. It's full effects might not have happened yet. And I want to give it some more time to work. (My only chance of getting of the weight-gaining injection is to find another drug that works for me, and I've already tried most of them.)

I am hoping that I can manage all these things, but I'm scared, to be honest with you. Though it's never happened, I've been picturing myself curled up in a ball in a classroom screaming that the Nazis are coming to get me, or something like that, and the police and the paramedics being called, and me having to leave the university in shame and never return. Like I said, I have never had that happen before, and I've been going to college for the past four years regularly. But it's a fear. To live with a serious mental illness is often to live in fear. Fear of your own brain.

I have a legitimate fear of the medication that I take which ostensibly keeps my brain functioning, too. I am not in good physical health, and these meds are a large part of the reason why. My liver has to process these drugs, daily, for the rest of my life. What choice do I have? These drugs, so far, have been the only thing that could keep me from going totally out of reality and over the brink. I can't just stop taking them. Without these meds, I would likely have been dead by one more suicide attempt by now, and I would likely not be alive to say, "I'm worried about my health". So it's  quite the Catch 22. I am stuck in it, like so many other people, just wishing there was a better alternative.

At least I am sane enough now, to be able to say, "I used to be psychotic. I am not psychotic now. Please check out my gall bladder." That much is an improvement.

Wednesday, August 10, 2011

Changes: A new drug (Latuda), and a new college

I'm on a new antipsychotic. It's one that came out in the past year, called Latuda. I wasn't going to write about it here until I could tell some of the effects, but I want to say that, so far, I have noticed no negative side effects. Indeed, it does make me tired, but this is actually helpful in getting to sleep earlier at night than 5 AM, so it's okay.

The reason I wanted to take this medication is that, according to the research and the drug company, it supposedly doesn't usually cause weight gain. That doesn't mean it won't cause weight gain. As we all know many of these meds cause weight gain, and often serious weight gain, and any med can cause any of a zillion terrible side effects on any given person. But I am in a situation here. I've been prediabetic for a year, and I do not want to get diabetes. I HAVE to lose weight to avoid that. I have to find something that works for me other than the weight-gaining injection I get (which helps me greatly), Risperdal Consta. Although I have taken Risperdal religiously since it works for me, the fact that I am now obese led me to get off Seroquel, and I'd like to get off Risperdal too. But that won't happen any time soon. First things first.

I also went on this Latuda drug because I was having symptoms of psychosis again. They were mild, but they were real. They started around when I found out I got admitted to the university where I am afraid to go (although I am actually going to go), and they really freaked me out, because of the fear that they would get worse. I have them every so often, but this started happening more regularly, and in more forms. So I got a bit upset and then called and pleaded to get in early to see my doctor, who saw me right away, and gave me some samples of Latuda, which I asked to be put on. I think he's a good doctor. I know he has only put a few patients on this drug, so he's not sure it will work and neither am I, but I think it is worth a try.

There are actual law suits in the U.S. against the makers of Seroquel, because of the fact that many people on it have gotten diabetes, and I had to go off that drug for the sake of my health. But going off that drug left me with just the one antipsychotic in my system, and also left me totally unable to sleep.

This is what I take now:
Vistaril (for sleep)
Clonazepam (for anxiety and sleep)
Ambien (for sleep)
Wellbutrin (for depression)
Risperdal Consta injections (antipsychotic)
Latuda (antipsychotic)
Melatonin (for sleep, large dose)
and then a few other things for my other health problems, plus vitamins.

I haven't written down all the meds I take here in a long time, and I don't do it regularly because what works for me will not necessarily work for you, and I don't want anyone to think that it will. I also don't need any lectures on the dangers of psychiatric drugs, as I know all about those, and I do what I choose to do for my health because it is what I need to do to get by. If I don't sleep, all is lost. My life becomes hell when I don't get enough sleep, so I have tried everything there is to try for it that my insurance will cover, and some things my insurance won't cover, and this is what is working right now.

About the university, after a lot of heart-wrenching angst-filled contemplation, I went to the orientation and signed up for classes. I am telling myself I can do this, and hoping I can do this. I am only taking two classes, because, with my job, that is all I can manage, and that is okay. I am also not going to focus on perfect straight A's, though I always shoot for a good grade, I know that I might not get all A's, and that is okay too. I am going to be meeting with another person at the office of disabilities services at the university later this week, and I have already visited that office and had all the paperwork filled out by my doctor so that I can get help such as a notetaker in my classes (if anyone will volunteer to do it; they do get paid if they do), and extra time on tests and a quiet place to take tests (if I can work that out with my schedule). So I am hoping that this will work out. If there are a lot of tests, then, it probably won't work out with the schedule to get the extra time, so I'll have to see how that goes.

I'm scared about this; I won't lie to you. But I thought to myself, what if I don't do this? Then I get to wonder for the rest of my life what would have happen if I had at least tried it. And so, I think, because of all the other regrets I have over things I lost to this illness, I am going to try it, so I can see if I can have this thing and not lose this too. If it doesn't work out, my life won't be over. I am going with the thought and the hope that it will work out, and I am going to try hard to make it work out. Education has meant a lot to me all my life, and I lost excellent opportunities to go to other colleges in the past, due to this illness, so I feel that, now that I have worked steadily in college since 2007 and finally got my AA degree going part time at the community college, maybe now I can handle going to the university going part time. And so I will try it. Please wish me luck!!

Thanks for all your input and support, everyone. I really appreciate your words of wisdom, your ideas, and your comments overall. I'm sorry I've been really busy lately and haven't kept up with everyone else's blogs as much as I would like to, but I do so when I can.