Monday, March 03, 2008

medication changes and stigma

Well, I saw my doctor today, and had a few changes made to my medications. Because I've had a problem with Abilify making me vomit for a month now, she's taking me off of Abilify. This is unfortunate, because that was the last medication for me to try that does not cause weight gain.

I reminded her how much weight I've gained from Invega, and she decreased the dosage. Luckily, I didn't gain any more weight this past month, but that might have been because of the Abilify.

Because I have not been sleeping, I asked to be put on Trazadone, which worked for me years ago for sleep. So she put me on that. She also increased my Seroquel, even though it's known for causing weight gain, because it can help me sleep, and sleep is seen, I guess, as more important than weight loss.

I'm still on the same dosages of Prozac, Klonopin, and Inderal, so nothing else was changed. She said she didn't want to change too many things at once, so...

I'm happy that the Invega was finally lowered a little bit, but it was only lowered a little tiny bit. I am still on 9 mgs of it which is not a low dosage or anything. I was on 12 mgs which is the highest that is recommended to ever take. I'd like to get off of it completely, and I tried to emphasize that to the doctor.

She said she really wanted me to get down to two antipsychotics instead of three, and I agreed that was a good idea.

I just didn't want to go off of Abilify, because even though it makes me sick to my stomach every day, or at least every other day, I know it doesn't cause weight gain, and I was thinking of it as my only hope.

Speaking of stupid thoughts, I told the doctor that I was having some trouble with somewhat delusional thoughts about a guy, and she said if I know it's not real, then it's not really a delusion. It's called something else, some medical term for "messed up thought", which I can't remember. I explained that I knew I wasn't doing as well as I should be when I have these kinds of thoughts. But I haven't been hearing voices or anything, and I'm not psychotic, so that is obviously a good thing.

I ran out of Restoril a couple days ago, and I was up all night (literally, until 8 am) last night, so I hope that the Trazadone works; it's supposed to be covered by my insurance, which Restoril isn't, and it's not addictive, which I like. I don't really like taking things that are addictive and hard to stop taking. I only take a really small dosage of Klonopin, and I only take it when I need it, although that is usually every night, since I have so much trouble sleeping.

I asked the doctor about some research I've read on Schizophrenia.com, about a drug called Metforin (Metformin?) being used on people taking antipsychotics to help them lose weight, and being successful. She had not heard about this, so she said she would look it up and ask the medical director at the community mental health center if he has heard of it. I should have not lost the article after I printed it out to show it to her, but I did, so hopefully she will look it up. Apparently, this drug is used typically on people with Diabetes, but has been used in research on people taking antipsychotics, even when they do NOT have Diabetes so they can lose weight.

Anyway, this is what's going on with my medications these days.

In other news, on the importance of taking medications, the book I just read called Crazy, was really interesting and reiterates over and over how bad things can get when people with Schizophrenia stop taking their medications. It also discusses how people with mental illnesses are treated in the criminal justice system, with a lot of horrific examples of how things can go badly for people in that situation. This reminds me, there is a commercial on TV running today about the local news, and it says, "This man has Paranoid Schizophrenia? Why was he allowed to roam free to commit crimes??" as it describes a story that is going to be on the news about a criminal who has Schizophrenia.

I am so sick of stories like this! You never hear the news stories about people with Schizophrenia leading quiet, peaceful, productive lives and not bothering anyone. You never even hear about how many people with this disease are VICTIMS of crime, not perpetrators of crime, although becoming a victim is far more likely. You don't hear stories about people with cancer who get caught committing some crime discussed as though the people with cancer are ALL just a bunch of DANGEROUS felons. So why all the news stories about the DANGEROUS people with Schizophrenia?? Stories like this do nothing but add to the stigma in our society that already prevents many people from getting the help they need for their illness, and prevents the public from being properly educated about the disease.

I should probably write a letter to the news channel that is airing this story. Maybe I will.

Once, when I was working for the nonprofit agency that I used to work for, which provides services to people with disabilities, a manager said with outrage that some man with Schizophrenia had called asking for help finding a job - which is what her program did, help people with disabilities find jobs (only, not apparently psychiatric disabilities). I said, "So - what do you mean, we don't help people with Schizophrenia?" naively. She said, "Well, not if they're dangerous! Of course not!" I was amazed and disgusted. I thought this woman, who was highly educated and had many years of experience in her field, was smarter than that. I almost said, "Do you think I'm dangerous?" But I decided not to say anything. I just kept my mouth shut, afraid what would happen if people at my job found out about my illness. I eventually told one person at the job that I had this diagnosis, but I was afraid to tell the rest of them. The whole agency was mired in the stigma of mental illness being "different" than other illnesses and disabilities. It was really outrageous to me, but it didn't seem to bother anybody else.

When NAMI had a walk for awareness for National Mental Illness Awareness Week, I wrote an email to everybody I worked with to let them know about it, and mentioned that we shouldn't differentiate between psychiatric disabilities and other disabilitis. The only person who responded to that email was my boss; all the dozens of other people who received it said nothing. I thought that was very telling. It's not that the people I worked with were especially ignorant or were discriminating more than other people do, but they were just like the general public, in that they viewed mental illness as something different from other illnesses and debilitating disabilities. When I ended up having to go to the hospital, I had to tell people in management that I was on the psychiatric ward, because someone had started telling people that I was not really in the hospital, when the hospital staff would not break confidentiality laws to tell her I was really there. After I mentioned the ward I was on, I got treated like I had just come out of the closet with too much information. It was very disheartening. The people were not trying to be mean, but most of them weren't trying too hard to understand either. I think I broke some unspoken rule that you just don't talk about things like mental illness in your workplace. As if we are ever going to get rid of ALL THE STIGMA without TALKING about it???

The only way things are ever going to change is if more people do talk about it, and talk about the diagnosis they have, the medications they take, and the fact that they are NOT dangerous criminals just because they have an illness like Schizophrenia. The only way things are going to change is if people with mental illness stop hiding in shame and start talking more openly about their disorders. I think that more people need to do that in order for real change to take place. I know it is hard to do though, because there are consequences with speaking out about your illness, and one of them is you could end up being ostracized.

Okay, I'll get off my soapbox for now!

1 comment:

Wanderer62 said...

When I went back to get my B.F.A. in painting and photography after I became psychotic I told my advisor and a couple of teachers about how I suffered from schizophrenia and depression and they all treated me decently. It was a relief to be open about it to them though I didn't tell any of my classmates. I told my brother that he could tell people that I suffer from schizophrenia because it explains a lot about my withdrawn behavior. No one has approached me, but then I don't give anyone much of a chance to, but then no one has stigmatized me either and I live in a small university town. I also told the people in my Al-Anon meeting that I suffer from schizophrenia and again it was a relief to be honest and basically unashamed in front of them. I don't know what I would do though if I were working. That's a tough call. Still, I agree with you that people with mental illness need to come forward about it to others in order to deflate the harm and stupidity of stigma.

Kate

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