Sep 09, 2008
Today I went to get a flu shot. That's not so important. Everyone should get one. I get one every year. And like usual there was some reaction to it. I feel run down. But I'll get over it. But I couldn't get over in a positive sense was how my doctor treated me differently. I had had my psychiatrist signed a letter about the medications I am taking so my doctor would understand. I explained to him about glycine and the glutamate antagonists. He hadn't been aware of them until then. I took the glycine in front of him and explained how it worked. He asked how I acquired tardive dyskinesia and what antipsychotics could cause it. I said "all of them except Clozaril" and he wasn't aware of that. But its factual information. And as I said for some people Clozaril is a good option but I couldn't tolerate it. Some people are unable to take it if they develop the blood dyscreias. But rather than be upset I am advocating for change. I am attending a presentation on new medications in development. I wrote the director of the hospital with my psychiatrist's permission from my non profit and my psychiatrist said he'd communicate with him beforehand. So there's a chance I could make a difference. And my psychiatrist is pleased with how the Zofran is working now that its at a full dose. And he said it has some effect on schizophrenia but as an adjunct and not on psychotic thoughts as well as the tardive psychosis which is still being studied. But as for the doctor's office what wasn't there that was before was any fear or paranoia that I had. That's because I am recovered from schizoaffective from glycine. And what was there? Well I had spasms where I had trouble remaining still. And before I had the shot I could feel the needle enter my arm which is a tactile hallucination. Its just not from schizophrenia in my case. Since it occured during motor activation it was what they are identifying as tardive psychosis. And when I got the actual shot I hardly felt it. I have a follow up for a blood test just to check out everything. But I know the technicican who takes the bloodtest. He's a nice elderly gentleman who knows I have passed out before and has me count down from 10 and so it doesn't happen. But since I was on Clozaril years ago getting blood tests is old hat to me. And thanks to the letters from my neurologist and psychiatrist I got accepted for Access A Ride conditionally, out of borough which is a big start. And thanks to a contact in Albany my Medicaid was restored and my neurologist wrote up an appeal for denial for coverage for Medicare Part D. And I have consumers to represent and a board meeting but I can't discuss that as its confidential to my non profit. So what happenned today? With the flu shot I was armed against the flu virus which makes many people sick and causes some fatalities each year. But my doctor was armed with new information that he didn't know before from verifiably clinical sources. And I am getting ready to make a difference hopefully in a real world sense about the direction of research. So society will be able to help people recover. And like many people I did have a lot of negative feelings but each time I give back to people I remember that I wouldn't be there to help them otherwise. And that gives me a feeling of self worth. And when we all feel this way and unite that's how we can advocate for safer and more effective treatment.