Posts Tagged ‘Insurance’

I’ve lost three months of my life recently to Pristiq. Pristiq is an antidepressant that I started and from the very beginning I felt it was wrong. I lost interest in reading and writing. I lost interest in weight training and sex.  I lost three months. I knew I wanted off the drug but every web site I visited talked about listed testimonials of people who various reasons (lost insurance leading the way) have had to go cold turkey of the drug. People complain of Massive headaches and nausea and light-headedness. All of which I have experienced to one degree or another. None to an extreme or uncomfortable level.

This past week when I went to refill my prescription, I lost the new bottle. Faced with going out of pocket or cold turkey I figured I would try going, over Christmas, cold turkey without my Pristiq (I am still on Abilify). As I say So far the only thing I have noticed is last night I read 4 chapters in a new book. The Last Werewolf. While on Pristiq I was unable to read an entire page from that book. I am now driven to get back into the gym and last night took a long walk with the dogs and Ed after dinner instead of napping. I am relived to be back in sorts to a large degree. I still won’t watch the hallmark channel yet. Why ask for depression or tears. I do, for the first time in months feel in control. Something I have not felt in months.

Is that the goal of the mental health professionals, to give people socially acceptable ways of feeling numb? I thought it was to develop the tools to maintain control. I’ll keep my therapist but I am dropping my pill pusher psychologist. I want to develop my own tools for handling my life and life experiences. I don’t want to feel dead.

World AIDS day is upon us. That magical time of year when we celebrate…. What?

For as long as I have been active in the AIDS community, 30 years in one capacity or another, I never understood what exactly World AIDS Day is about. I went to Wikipedia for the answer.

According to Wikipedia World AIDS Day, observed December 1 each year, is dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection. It is common to hold memorials to honor persons who have died from HIV/AIDS on this day. Government and health officials also observe the event, often with speeches or forums on the AIDS topics. Since 1995, the President of the United States has made an official proclamation on World AIDS Day. Governments of other nations have followed suit and issued similar announcements.

OK – nice start. But what has it become. The first thing to greet me, as a visitor to the official World AIDS Day site, was an ad to purchase a “limited edition sparkly red ribbon.” Wow! What a great way to show solidarity with the dead and dying. Be all sparkly and happy. “See I support you!” I really don’t need that kind of support. I could order a box of red ribbons for 30£. And that helps me how? In my mail over the past month, I have more than a hand full of invitations to fundraisers. I am surprised Hallmark does not have a line of cards out. The smallest box on the front page of their web site is dedicated to “getting involved.”

I think it is clear that we have gotten off topic. World AIDS day was created to honor the dead and prod governments into action. It is still a pandemic and the there is much to be taught to friends and co-workers and most important, to government officials who control the purse strings. At least once a week I get a question about how I can be Positive and my partner is still negative after almost 19 years. My partner gets asked regularly, “how could he have sex with someone who is positive?” The lack of knowledge within the GLBT community is breathtaking. Maybe because we are in the south where schools are forbidden from having frank discussions about sex, but we as a society are setting ourselves up for an epic fail in protecting the next generation.

Every few years the virus has been shown to mutate. The virus is getting stronger and more and more resistant to medications. People are going to start dying again. Having gone through Kaposi Sarcoma myself and having had patients with Pneumocystis pneumonia die in my arms, I can tell you that it not pretty. It is not dignified. It is not painless. There was never a time in my life that I was negative. From the first month the test was available I flunked. There is no reason another person in Florida should get infected if we were doing our job, our obligation, to learn and teach about AIDS.

This year nationally is becoming a year of political action driven by the Occupy Wall Street movement. We need to recommit ourselves as a community to political action. One of the causalities of the past decade of budget cuts to support the wealthy and corporations is that many AIDS and public health groups have been force to close or cut back on services. So yes, we need to dig deep and give. Not just money. We need to give of our time and talents. We also need to focus on direct political action. We need to develop a new generation of leaders who understand what we have been through and have a desire to stop it from being repeated. We need to lobby for more money or at the very least not to loose any more. Most importantly we need to stop acting so corporate in our response. We need to start acting locally and maybe take a lesson from ACT-UP about direct political action. Locally we have some very good people on the school board and a few on the county commission. We need to support them and talk to the others. We need to recommit ourselves to the original goals of the World AIDS Day founders. At the same time we should not forget that some times direct political action is necessary. The world’s spotlight will be on Tampa next summer when the Republican circus comes to town. We need to let them know that it is not ok to lie to the children about AIDS and gays. Neither is “curable” and only one needs to be treated.

I'm part of the 99%

This picture form the 99% project strikes too close to home for me. After law school I enrolled in the American Bar Association Health Plan. After a couple years in Washington DC and then Philadelphia, we moved to Florida. After about four year in Florida my rates started to escalate. A little at first then, I found myself paying $1700 a month between premiums and co-pays. A couple years later it had risen to $2200 per month. I had maxed out all my credit cards just trying to keep prescription drug coverage. Now, close to $40,000 in debt from trying to keep my prescription coverage I gave up and went on disability.

Posters form Toronto advertising against corporate welfare proposals funded by cuts to social programs

I am now stuck. I cannot work full time since that would disqualify me for disability and I cannot get insurance due to “pre-existing conditions”. Somehow the republicans would tell me that this is my fault.

They are right. I have chosen to live rather than die and that choice has bankrupted me. I can continue to help people with legal situations pro bono but if I accept money I risk loosing disability. And honestly, after decades of toxic medication, two rounds of Chemo and other experimental therapies, the body probably could not work full time. But I want the chance to try to feel useful again. Even if I could work, I would not be able to get insurance. I would be back at square one. The system is set up in such a way as to trap people. Either give up all hope of being a useful member of society or die. Nice choice. I am part of the 99 %.

 

This hits too close to home!