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Hello Regan, I think this is the first blog I read from a woman perspective on HIV/AIDS, as i read through it I realized that no matter our gender we basically want the same- to be healthy, to be empowered and to help others. I salute you and admire your bravery on coming out and becoming an activist and enjoying the world while at it. I am a long term survival that has had a whole lot of "jet-lags" along the way since acquiring the virus in my mid twenties. It has not been easy to come out for me with HIV/AIDS because of the stigma that existed and still exist amongst people of all races and genders, even amongst the community, but for the most part everyone that knows me knows by know about me been HIV positive and everyone has been supportive. Although, at times I have needed to be quite about my status to protect the ones near me I am “coming out” slowly with my status. I have been on several medication treatments one of them being GlaxoSmithKline’s Ziagen /abacavir. This was a while back exactly at the same time that I was invited to stay for a week in a friends house at the beach. I remember talking to the doctor and him informing me of the possible side effects that Abacavir could give me. I was in my late 20’s or early 30's I think, I knew that I needed to take meds but wanted to hold on. I took Abacavir and was highly sensitive to this particular drug and that had led to a rash. Needless to say I was very scared. I spent my much deserved vacation inside the house, with a rash that was not only ugly but was a clear reminder how close I was to poison my body with the medication that was supposed to help me save my life. Even though I have made an informed decision with my doctor I was angry and very afraid...and became bias towards all medications and all pharmaceuticals. I embraced life again when the rash disappeared. I spoke to other people whom this particular drug has worked well for them and it made me see that I needed to take control over health and try another route. It took me a while to realize that this particular medication was a bad choice for me but it was helping many others and that I needed to be proactive and start another treatment. I did work hard to stay as healthy as possible. I tried another drug by Bristol-Myers Squibb which turned me so yellow that I looked like a New York Taxi. Another medication gave me some lipodystrophy. I know that all of these experiences have helped me learn more about this disease. I have learned that there are many options and not all work for one person the same way. I forgot my anger towards pharmaceuticals and took action, again. I even entered Reyataz Photo contest because I knew that even when some of these drugs did not particular worked for me, they did work for other people. . On the contest I won third price amongst fifty others for a small essay and a photo, which felt good. I am on a new medication now and that seems to work better for me at the moment. As I am reading your blog I see that you agree that new information from the pharmas about meds should be giving to patients also and not exclusively to doctors. In your blog you said- “I’d just seen a presentation of the latest data on testing for a high sensitivity reaction to Ziagen/abacavir, given by the drug’s manufacturer GlaxoSmithKline. To reduce a half-hour presentation into several sentences, scientists have determined that it is now possible to very accurately predict whether or not a patient will have the high sensitivity reaction to abacavir that they have seen in some who take the drug—without having to expose a patient to the drug itself. It’s big news. -- I think it is amazing that developments like these are made, but I get frustrated when I hear pharmaceutical companies say that they’re going to focus their marketing efforts around the news of this test only to the physicians.” I am glad that you are committed to speak out about important issues and bring them to us. Speaking about these issues will help us all make better decisions by updating us with information that should be giving to us directly from the pharmaceuticals. And I thank you for this.
I found this really interesting and pertinent article on Edge Boston that I thought would be of interest, so I decided to share it with you all. Check it out at: http://www.edgeboston.com/index.php?ci=108&ch=news&sc=glbt&sc2=news&sc3=&id=22098
Truth sets us FREE, and give good health too.
March 31st, 2008 I just watched the interview with Jake Glaser this morning and felt it was very SAD that this story came out to "promote" AZT, a drug that probably caused his mom and sister's death - and his life is saved because he is not on such a drug. Why didn't that show do a story on the December 2007 VERDICT of the women that won millions because of the HIV tests - and showed she had signs of AIDS "from" the medicine? I had hoped the days were over that the pharmaceutical companies were going to cover for these drugs. I do not believe there is anything called HIV (no virus), but that the HIV medications CAUSED AIDS. Instead Jake Glaser - in my opinion should be SUEING for wrongful death of his mom and sister, and not promoting AZT as a miracle drug - when it could have been what killed two members of his family. Maybe he just believed a LIE all these years, and needs to know the truth, and can "someday" be a spokesperson to really HELP. Please get this information to Jake - so he can at least do his own research on HOW his mom and sister died. The truth sets us free! I don't think he knows the truth. Jake seemed like such a nice kid - I felt he really should have this information. I know someone from high school that took AZT and died too, and left behind a daughter with no mom (she also died after her boyfriend died). I also believed the HIV lie too - UNTIL I meet a homeless man in Times Square that told me and someone I was with that day..that he was diagnosed with HIV back around 1982 along with about 5 of his friends (all drug users - with needles) and his friends took the AZT and felt great for weeks (as at first it killed off all bad viruses in their body assumably - but THEN it supposably kills off your natural immune system - what fights sickness and ends up killing you from my understanding) and then a long painful death that took about 8-9 years. The homeless man lived on the street - did drugs and drank alcohol, smoked - etc., and is a HEALTHY man to this day...still living on the streets and NEVER got AIDS - and still reads HIV positive. The ONLY one of his friends ALIVE and the difference is - he did NOT take the AZT and his friends did. I hardly call AZT a "miracle drug", maybe a better word could be (in my opinion) is a DEATH SENTENCE to those that take or took it. I am not sure if they even use it anymore - because of so many deaths and the controversy of the drug. He needed to take a look at these webpages: http://www.newmediaexplorer.org/sepp/2004/07/15/aids_experiments_on_children_in_new_yorks_incarnation_center_a_human_tragedy.htm http://www.flingr.com/blogs/action/showblog/ToDate/-1/UserID/521/ Posted: 11/27/07 4:55 am RETHINKING AIDS............. http://www.rethinkingaids.com/ http://www.rethinkingaids.com/quotes/rethinkers.htm http://www.shirleys-wellness-cafe.com/aids.htm Also - a good webpage is: www.chick.com :)
March 31, 2008