Hiv/aids @ MindSay 
Loooooooooooooo... Time!
Hello Mindsayers!
I don't know how many of you still have me friended, but I thought it was about time I give some kind of an update here. It's been nearly a year since I last posted here.
The biggest change in my life is that nine months ago I did dreadlocks. I love them. They are one of the best decisions I've ever made, despite what a lot of my family (and friends) had to say - and still have to say in a lot of cases. Heh.
When I started them on March 5 they looked like this -
Now they look like this -
I've lost a lot of length, and they're still babies, but I love them soooooo much. I've never felt so comfortable in my own skin as I do now. It's weird. Dreadlocks teach you a lot about vanity and patience and I needed lessons in both of those.
My plans are to never again cut my hair, at all. I'm going to be an old granny with dreadlocks. The coolest hedgehog slave, dreadlocked old lady EVAR! ^_^
Dreadlocks have also gotten me a lot more in touch with my body and nature in general. I've begun using a lot of all natural products and to pay more attention to how things react inside me with different things. It's really enlightening.
If you're interested in seeing their full progress you can check out my flickr set on them.
JD and I are still engaged and super happy. He's been great at supporting me through the dread process. He's never complaned even once of me looking like shit and he's just been wonderful. To show my appreciation I let him cut off his long hair, which was a big deal for me, but he's still the sexiest man alive. ^_^
This was us at my brother's 19th birthday party in September. Soooo happy!
We added a new addition to our little family in September - a pug/shih tzu (putzu?) mix named Throckmorton!
He's so sweet and oh so funny! He's our child and he gets treated as such. I am not usually a dog person, so it blows my mind that I can love a stinky little puppy so damn much. He's always able to put a smile on my face. ^_^
Of course we still have the real stinker, Theodore.
That picture is a little old, from when my dreads were newborns.
Theodore is still doing wonderfully, thankfully. He's definitely no Quillson, but I love him. He's not a cuddler at all and doesn't seem to like me half the time. He likes JD better than me and throws parties in his cage EVERY night. He keeps me smiling too.
The bad news is that Throckmorton HATES Theodore. They do not get along at all, so I can't have Theodore out and about with me as much as I used to because I'm scared of injuries. I'm not actually scared of Theodore getting hurt really, more that Throck will get quills to the eyeballs. Not good.
In July I got to take a trip to California to see some of my most precious friends. It was fantastic. Seriously one of the happiest and most fun times of my entire life. It was actually our first time meeting in person and I have to say, it was absolutely beyond my best expectations. I still think about it and get fuzzy. It was amazing. ♥
I started playing World of Warcraft in April and I've just finally gotten to level 60 on my shadow priest. I really enjoy WOW, but I have to do it on days when I've got a decent attention span. Heh.
I also still play DS like crazy and am playing Super Mario Galaxy at the moment on Wii. I love the Phoenix Wright series soooo much! ^_^
Health wise things could be better.
HIV wise I'm doing wonderfully. I haven't had any major infections or anything like that. My meds are still working wonders, but they're starting to see a bit of resistance, so we'll see how long I'll be able to stay on this combo.
We've finally gotten my migraines under control (mostly) with Depakote ER, which is actually pretty convenient because it is a mood stabilizer as well.
As for mentally, things are still really rocky for me. I was doing reasonably well on a combination of Effexor XR and Depakote, but I had a period where I lost my Gold Card (county health insurance) and was unable to go get my medications. I'm still working on getting into the psychiatrist again. It takes months. Awesome huh?
I'm just taking it day by day and trying to make the best of it.
Mostly I just deal with extreme ups and downs and a real inability to control my emotions. I also deal a lot with social anxiety and super irritability. I have no attention span most of the time and find it really hard to do normal activities most days.
I'm working on getting SSI still. Ugh.
Oh! I started crocheting and I LOVE IT! It seems to be one of the only things that can hold my attention and relieve anxiety for me. I guess the repetitiveness of it. I'm still learning, but I've made a lot of projects already and can see maaaaaany more in my future. ^_^ I'm thinking about setting up an etsy store one of these days.
As for my family, they're all doing wonderfully. My brother is graduated and working now. He has a Subaru WRX that is adores and a girlfriend that I'm not too sure about yet. My cousin Mandy had a baby in May named Phoenix. She's absolutely precious.
That's the two of them together. Gorgeous!
Well, this was an epic update, but that's pretty much all there is. I don't expect to update here regularly, but I'll never leave here permanently because Mindsay is a great community with too many people I care about. Plus, this was where I popped my blogging cherry! XD I still read every day even if I don't comment, I promise.
If you want to keep in touch more regularly, my email is roxieprince@gmail.com. Also, these are the other places you can find me online -
http://sayhedgehog.livejournal.com - I update here pretty dang regularly, but it's partially friends only.
http://myspace.com/roxieprince
http://sayhedgehog.deadjournal.com
http://www.flickr.com/photos/sayhedgehog/sets
Much love to all of you! ♥
I don't know how many of you still have me friended, but I thought it was about time I give some kind of an update here. It's been nearly a year since I last posted here.
The biggest change in my life is that nine months ago I did dreadlocks. I love them. They are one of the best decisions I've ever made, despite what a lot of my family (and friends) had to say - and still have to say in a lot of cases. Heh.
When I started them on March 5 they looked like this -
Now they look like this -
I've lost a lot of length, and they're still babies, but I love them soooooo much. I've never felt so comfortable in my own skin as I do now. It's weird. Dreadlocks teach you a lot about vanity and patience and I needed lessons in both of those.
My plans are to never again cut my hair, at all. I'm going to be an old granny with dreadlocks. The coolest hedgehog slave, dreadlocked old lady EVAR! ^_^
Dreadlocks have also gotten me a lot more in touch with my body and nature in general. I've begun using a lot of all natural products and to pay more attention to how things react inside me with different things. It's really enlightening.
If you're interested in seeing their full progress you can check out my flickr set on them.
JD and I are still engaged and super happy. He's been great at supporting me through the dread process. He's never complaned even once of me looking like shit and he's just been wonderful. To show my appreciation I let him cut off his long hair, which was a big deal for me, but he's still the sexiest man alive. ^_^
This was us at my brother's 19th birthday party in September. Soooo happy!
We added a new addition to our little family in September - a pug/shih tzu (putzu?) mix named Throckmorton!
He's so sweet and oh so funny! He's our child and he gets treated as such. I am not usually a dog person, so it blows my mind that I can love a stinky little puppy so damn much. He's always able to put a smile on my face. ^_^
Of course we still have the real stinker, Theodore.
That picture is a little old, from when my dreads were newborns.
Theodore is still doing wonderfully, thankfully. He's definitely no Quillson, but I love him. He's not a cuddler at all and doesn't seem to like me half the time. He likes JD better than me and throws parties in his cage EVERY night. He keeps me smiling too.
The bad news is that Throckmorton HATES Theodore. They do not get along at all, so I can't have Theodore out and about with me as much as I used to because I'm scared of injuries. I'm not actually scared of Theodore getting hurt really, more that Throck will get quills to the eyeballs. Not good.
In July I got to take a trip to California to see some of my most precious friends. It was fantastic. Seriously one of the happiest and most fun times of my entire life. It was actually our first time meeting in person and I have to say, it was absolutely beyond my best expectations. I still think about it and get fuzzy. It was amazing. ♥
I started playing World of Warcraft in April and I've just finally gotten to level 60 on my shadow priest. I really enjoy WOW, but I have to do it on days when I've got a decent attention span. Heh.
I also still play DS like crazy and am playing Super Mario Galaxy at the moment on Wii. I love the Phoenix Wright series soooo much! ^_^
Health wise things could be better.
HIV wise I'm doing wonderfully. I haven't had any major infections or anything like that. My meds are still working wonders, but they're starting to see a bit of resistance, so we'll see how long I'll be able to stay on this combo.
We've finally gotten my migraines under control (mostly) with Depakote ER, which is actually pretty convenient because it is a mood stabilizer as well.
As for mentally, things are still really rocky for me. I was doing reasonably well on a combination of Effexor XR and Depakote, but I had a period where I lost my Gold Card (county health insurance) and was unable to go get my medications. I'm still working on getting into the psychiatrist again. It takes months. Awesome huh?
I'm just taking it day by day and trying to make the best of it.
Mostly I just deal with extreme ups and downs and a real inability to control my emotions. I also deal a lot with social anxiety and super irritability. I have no attention span most of the time and find it really hard to do normal activities most days.
I'm working on getting SSI still. Ugh.
Oh! I started crocheting and I LOVE IT! It seems to be one of the only things that can hold my attention and relieve anxiety for me. I guess the repetitiveness of it. I'm still learning, but I've made a lot of projects already and can see maaaaaany more in my future. ^_^ I'm thinking about setting up an etsy store one of these days.
As for my family, they're all doing wonderfully. My brother is graduated and working now. He has a Subaru WRX that is adores and a girlfriend that I'm not too sure about yet. My cousin Mandy had a baby in May named Phoenix. She's absolutely precious.
That's the two of them together. Gorgeous!
Well, this was an epic update, but that's pretty much all there is. I don't expect to update here regularly, but I'll never leave here permanently because Mindsay is a great community with too many people I care about. Plus, this was where I popped my blogging cherry! XD I still read every day even if I don't comment, I promise.
If you want to keep in touch more regularly, my email is roxieprince@gmail.com. Also, these are the other places you can find me online -
http://sayhedgehog.livejournal.com - I update here pretty dang regularly, but it's partially friends only.
http://myspace.com/roxieprince
http://sayhedgehog.deadjournal.com
http://www.flickr.com/photos/sayhedgehog/sets
Much love to all of you! ♥
We Think Life Is Tough. We Really Do.
Operation World is a book that takes the reader—rather, the pray-er—to different countries in the world throughout the year. It’s a very helpful text, filled with information which gives the pray-er lots of things to pray for in each of the various countries.
Today and tomorrow, the book takes us to South Africa. I was stunned when I read some of the HIV/AIDS stats. They’re a bit dated, so I went online for more recent figures. Here they are:
The most current estimate is that 5.5 million people are living with HIV, which represents about 12 percent of the population.
One in four people age 15 to 49 years is infected with HIV.
Over 1,700 AIDS related deaths each day.
Currently it is estimated that there are 600,000 orphaned children as a result of AIDS.
A survey done in 2004 reported that South African citizens spend more time at funerals than weddings, haircuts, or grocery shopping.
That's not all. In the 1990's, there were 200,000 murders.
Perhaps you could join me today and tomorrow in praying for the people of South Africa.
Circumcision -
_____________________________________________________
Date Line July 20, 2007
Date Line July 20, 2007
Seems I can yell about Jewish evangelicals now. A small contingent seem to have infiltrated the Jewish community and is now promoting an end to circumcision.
We can set aside the religious tradition. We can also set aside the fact that the physical act of circumcision is also the symbolic Christian name (St. Paul’s Doctrine of Salvation by Faith or Law) for the Laws of Moses. We can, if we are of the Right-wing idiot brigade.
Reality check! How do we set aside the very real medical evidence that circumcision is a major defense against the spreading of sexually transmitted disease? How do we justify exposing children and newer generations to widespread epidemics?
Until the 1960's, nearly ninety (90%) percent of American males were circumcised. During the period in which the Right-wing rose to power, and the Evangelical Fundamentalists became a political force, that number has dropped to fifty-seven (57%) percent and the spread of STD’s has grown dramatically.
Remember, the doctrine of those who would destroy you and the land you live in: Do the most harm to the most people! This doctrine is now infiltrating the Jewish community, where circumcision remains a near universal practice.
“Near universal” because there are always a few who had both their heritage and their children enough to see them exposed to disease. It is a harsh reality, even ion the days of Moses, we are told there were those who did not mark their doorposts to keep away the Angel of Death.
Jewish Law, as you might have read in other postings, is a medical text for the wise. The following of the laws was what kept Jewish communities free of the plagues which, during the sixteenth and into the seventh century, killed millions of those who set aside the law in favor of a Doctrine of Faith.
As any who has read scripture knows, the Doctrine of Faith, as set down by St. Paul, forbids the adoption of any of the 613 laws which constitute the Circumcision (Laws of Moses). Any who have read Leviticus are aware that the simple act of washing is a repeated law.
St. Paul set up an interesting Catch-22 for any who were his nineteenth century followers. For those before the coming of indoor water and central heating, being told to avoid washing was the relief of a burden.
It is worth noting that the Romans had indoor plumbing based upon the use of lead pipe. Of course this contributed to lead poisoning and the insanity which resulted in them discarding plumbing in favor of faith as dictated by Paul, rather than based on The Rock designated by Jesus. But who cares about that.
The point today is that history is clear. The Circumcision, the physical act and the related laws, promote human health and well-being. It is therefore important that these be ended by any society which worships disease and its spread.
Look at all the nations which do not practice circumcision. Take a very good look at them.
Those with well financed cradle-to-grave universal health care have STD epidemics which are easily identified and contained. Those nations without such care have major infection rates which are killing, debilitating significant of their societies.
America, as promoted and portrayed by the Right-wing, is a nation which lives by the sword. It is a nation which cares very little for its young. It is a nation which cuts support programs in favor of military conflicts of choice intended to destabilize geographic regions.
The most harm to the most people. The Right-wing doctrine which has controlled our nation for over a quarter century has begun to attack basic health and welfare issues among those who also consider them a tenet of faith and belief. It has been done, Paul did it, people died.
_____________________________________________________ We can set aside the religious tradition. We can also set aside the fact that the physical act of circumcision is also the symbolic Christian name (St. Paul’s Doctrine of Salvation by Faith or Law) for the Laws of Moses. We can, if we are of the Right-wing idiot brigade.
Reality check! How do we set aside the very real medical evidence that circumcision is a major defense against the spreading of sexually transmitted disease? How do we justify exposing children and newer generations to widespread epidemics?
Until the 1960's, nearly ninety (90%) percent of American males were circumcised. During the period in which the Right-wing rose to power, and the Evangelical Fundamentalists became a political force, that number has dropped to fifty-seven (57%) percent and the spread of STD’s has grown dramatically.
Remember, the doctrine of those who would destroy you and the land you live in: Do the most harm to the most people! This doctrine is now infiltrating the Jewish community, where circumcision remains a near universal practice.
“Near universal” because there are always a few who had both their heritage and their children enough to see them exposed to disease. It is a harsh reality, even ion the days of Moses, we are told there were those who did not mark their doorposts to keep away the Angel of Death.
Jewish Law, as you might have read in other postings, is a medical text for the wise. The following of the laws was what kept Jewish communities free of the plagues which, during the sixteenth and into the seventh century, killed millions of those who set aside the law in favor of a Doctrine of Faith.
As any who has read scripture knows, the Doctrine of Faith, as set down by St. Paul, forbids the adoption of any of the 613 laws which constitute the Circumcision (Laws of Moses). Any who have read Leviticus are aware that the simple act of washing is a repeated law.
St. Paul set up an interesting Catch-22 for any who were his nineteenth century followers. For those before the coming of indoor water and central heating, being told to avoid washing was the relief of a burden.
It is worth noting that the Romans had indoor plumbing based upon the use of lead pipe. Of course this contributed to lead poisoning and the insanity which resulted in them discarding plumbing in favor of faith as dictated by Paul, rather than based on The Rock designated by Jesus. But who cares about that.
The point today is that history is clear. The Circumcision, the physical act and the related laws, promote human health and well-being. It is therefore important that these be ended by any society which worships disease and its spread.
Look at all the nations which do not practice circumcision. Take a very good look at them.
Those with well financed cradle-to-grave universal health care have STD epidemics which are easily identified and contained. Those nations without such care have major infection rates which are killing, debilitating significant of their societies.
America, as promoted and portrayed by the Right-wing, is a nation which lives by the sword. It is a nation which cares very little for its young. It is a nation which cuts support programs in favor of military conflicts of choice intended to destabilize geographic regions.
The most harm to the most people. The Right-wing doctrine which has controlled our nation for over a quarter century has begun to attack basic health and welfare issues among those who also consider them a tenet of faith and belief. It has been done, Paul did it, people died.
Pro-family Coalition Calls Warren to Address Homosexuality and HIV/AIDS
Homosexual activists would have America believe HIV/AIDS is as much as a heterosexual disease as it is a homosexual disease. In Africa that may indeed be the case; however in America that is very, very far from the truth. In America the largest crowd of HIV/AIDS is the reprobate homosexual community.
25 Years Since AIDS Was Discovered
Today marks the 25th anniversary since AIDS was discovered.
U.S. makes strides in fight against AIDS
By LISA LEFF, Associated Press Writer Sun Jun 4, 1:00 PM ET
In those days, a diagnosis was a death sentence. No one knew how you got it, this mysterious ailment that savaged the human body with almost medieval cruelty.
ADVERTISEMENT
Baffled doctors threw everything they had at skin cancers, brain infections, intestinal parasites and other horrific symptoms. Nothing worked.
Twenty-five years after federal health officials first recognized the disease that would become known as Acquired Immune Deficiency Syndrome,
AIDS no longer is synonymous with terminal illness.
But like other wars, the early years of the AIDS epidemic produced survivors, people whose lives bear the contours of having crossed so malignant an enemy. Cameron Siemers, Lonnie Payne and Lisa Capaldini are three of them.
Three faces of AIDS, one message for a country where more than half a million people have died: 25 years is not such a long time.
___
Cameron Siemers, 24, infected during a blood transfusion as a toddler
LOS ALAMITOS, Calif. (AP) — Cameron Siemers had a big secret until he was 18. When he decided to give it up, he did so in spectacular fashion, telling his entire high school graduating class that he had AIDS.
"It was hard because I knew all these people," Siemers said of the commencement speech. "I just wanted to give them something because we were graduating. ... And just to get it off my chest, to let them know."
The revelation explained why Cameron was small for his age and missed long stretches of school in this Los Angeles suburb. When friends wondered why he could never have sleepovers at their houses, he always had said he had hemophilia, which was true. That's how he got
HIV.
His doctors think Siemers got tainted blood in a transfusion when he was 3 years old, but he wasn't diagnosed until he was 7. His mother gave him the news while they were playing Legos.
"I knew what it was and I knew what it meant, but I didn't think of it as a death sentence," he said.
As he's gotten older, it's gotten harder to hold onto his innocence. Siemers is among the minority of patients whose AIDS has proven resistant to the drug "cocktails" that changed the course of the disease. So even as treatment options have improved, he has gotten sicker.
He almost died two years ago after his inflamed pancreas started bleeding uncontrollably, a chronic condition associated with HIV. Recently, he was on a new drug that looked promising, but he had to stop taking it because the medication exacerbated the abdominal pain from his pancreatitis. His doctor is trying to get him enrolled in a study for another drug.
Looking back, it's easy to regret the things he hasn't been able to do that other guys his age take for granted. Asked for an example, he doesn't skip a beat: "Dating."
Siemers isn't sure why he grew up thinking AIDS was something he had to conceal from all but a few trusted friends. After he revealed his secret, he felt blessed by all the support he received.
While Siemers has contempt for infected people who conceal their HIV status from sex partners, he doesn't think of himself as morally superior to those who acquired the virus through unprotected sex or intravenous drug use.
"I've met a lot of people with this disease and they range from every ethnicity and every gender and they are just people trying to get though it," he said. "AIDS is not prejudiced. It will attack anybody."
_____
Lonnie Payne, 53, diagnosed with AIDS in 1986
SAN FRANCISCO (AP) — The same month Cameron was conceived, Lonnie Payne moved from Chicago to San Francisco with his lover, Joel Swandby.
In April 1981, the city was "the gay Mecca of the United States," and Payne and Swandby reveled in the freedom of living in a place where men could love other men with abandon.
Although Payne remembers hearing about a strange illness that surfaced in the gay community that year, it took time before "the rumor started getting longer" and reality set in. Once-beautiful men walked the predominantly gay Castro District like living skeletons, their sunken cheeks bearing the telltale lesions of Kaposi's sarcoma.
Not long after the first HIV tests became available, Payne, Swandby, Payne's twin brother, Lawrence, and the brother's partner, Timothy Bollinger, decided to get tested together, "as a family."
"In those days, there was this fear of being identified, so I remember not even using our real names."
All four men tested positive.
"In '86, that was a death sentence. We didn't know how long we had to live," he said.
"On one level we were like, 'OK, we have this bug. We are going to do the right things and stay healthy.' On the other hand, there was this fatalistic effect happening, where it was like, 'If I'm going to die, why should I worry about following some regimen?'"
The signs surfaced soon enough. Infection after infection broke through the men's weakened immune systems, and the drugs they were taking had debilitating side-effects. Those years are a blur for Payne, who was taking care of Joel while coping with his own illness. In 1994, Lawrence Payne died, followed by Bollinger in 1995. Swandby succumbed in 1996.
"It's hard to think back through that darkness for me at times," Payne said. "I never thought I would be in a world without my twin brother. ... It was like everything I knew that was comfort was eroding."
For reasons that remain a mystery, Lonnie Payne stayed strong long enough to benefit from a new class of drugs that hit the market around the time Swandby died. He thinks he'd be dead, too, were it not for the protease inhibitors that ushered in the era of so-called "cocktails."
"They were horrible and they were nasty. The side effects were everything you have ever heard — the diarrhea, the neuropathy," Payne said. "But for me, the reality is that they were working, and it changed my outlook on life.
"I started with an attitude of, 'I will try to see if I can make these drugs work because I'm really not ready to check out yet. There's a reason why I'm alive and the other guys aren't, and I just need to find out what it is."
Another decade has passed. To look at Payne, one would never know how sick he was. He retired in 1996 from his marketing job with a telephone company and volunteers as a director for two AIDS organizations. He is 53 years old when he never expected to see 40.
"I love the fact that we consider ourselves long-term survivors of AIDS and not people living with HIV and AIDS," he said. "Because we are survivors, and whatever has come up we have navigated through it, sometimes with great success and sometimes with just passable success."
____
Dr. Lisa Capaldini, nationally recognized HIV expert
SAN FRANCISCO (AP) — In her solo medical practice in the Castro District, Lisa Capaldini sees a lot of HIV patients. She once treated Lonnie Payne's late brother and partner.
Some suffer from a sense of spiritual ennui she calls the "Lazarus Phenomenon," after the figure whom Jesus brought back from the dead in the biblical story. Well enough to know their limitations but too sick to work full-time, they are the epidemic's walking wounded, Capaldini said.
"They are a little bit lost souls," she said. "They may have sold a business or never finished school because they didn't think they would be around. Now what they are dealing with is, 'I may live another 20 or 30 years. What does surviving this mean?'"
Capaldini first encountered HIV on a medical school fellowship in 1981. Her first AIDS patient two years later was an intravenous drug user who was going blind from the disease. She remembers her tears of impotence when she sent him home to die.
San Francisco General was one of the first hospitals to have a dedicated AIDS ward, and as a lesbian herself, she gravitated to the epidemic that was hitting gay men. Even as a new doctor, she became a nationally recognized expert in treating an illness with which no one was experienced.
These days, the type of care she provides is different. A decade ago, her waiting room was full of people getting ready to die.
"I have more patients with HIV in my practice than I ever have, but I am spending less time with them than I ever have," she said.
The challenge today is not to get complacent about HIV, she said. Patients must adhere closely to their drug regimens to avoid developing an immunity. That can be difficult.
There are complex psychological and sociological reasons why HIV patients fall off their meds, such as domestic and economic problems.
While Capaldini thinks the early years of the epidemic helped "humanize" gay men in America, HIV still carries a stigma, especially for heterosexual women.
"If you are a woman and you have HIV in 2006, you are either a slut or a druggy. People want to know how you got it," she said. "Having HIV remains a stigmatizing thing. It's not ever going to be a chronic condition like emphysema or diabetes."
http://news.yahoo.com/s/ap/aids_at25_3_faces - source
This article made me cry.
Twenty-five years. I'm almost twenty-two years old...
I think back to all that my parents suffered with AIDS, and my struggle with this disease pales in comparison. They dealt with the stigma and faced the fact that their lives were over. I at least am able to forsee living... They weren't allowed that luxury.
Whenever I set out to write something about this disease and my life living with it, I am struck speechless. I never know quite how to phrase all the things I think and feel. I have 21 years of anger, hatred, saddness, fear, and emotions I can't even begin to put a name to. I just get so overwhelmed.
All I can do is live my life, day to day, without giving this illness much thought. Even though it tore so much away from me, my brother, my family and my friends.
This disease has robbed me of so many many things, but a part of me can't help but be thankful to it - as stupid as that sounds - because it made me who I am. It made me see things in a way that I know I wouldn't have seen them otherwise. For all that it took away from me it has given me almost as much in return.
I hate this illness. I hate it for making my life so very different that everyone else's, for orphaning my brother and I, for taking away my career, my health, and for the inevitable fact that my brother, my family, my friends, and my husband are going to have to watch me wither away as I did my parents.
I just get so overwhelmed with every emotion this topic brings on me...
I know this post is really incoherant, and for that I am sorry.
Please, just know that this disease is not prejudiced. It will take anyone. Protect yourself. Protect those you love. Get tested.
And for the sake of those of us already living with this, don't believe the stigma. It's hard enough. We don't need that.
And remember those already lost to it.
U.S. makes strides in fight against AIDS
By LISA LEFF, Associated Press Writer Sun Jun 4, 1:00 PM ET
In those days, a diagnosis was a death sentence. No one knew how you got it, this mysterious ailment that savaged the human body with almost medieval cruelty.
ADVERTISEMENT
Baffled doctors threw everything they had at skin cancers, brain infections, intestinal parasites and other horrific symptoms. Nothing worked.
Twenty-five years after federal health officials first recognized the disease that would become known as Acquired Immune Deficiency Syndrome,
AIDS no longer is synonymous with terminal illness.
But like other wars, the early years of the AIDS epidemic produced survivors, people whose lives bear the contours of having crossed so malignant an enemy. Cameron Siemers, Lonnie Payne and Lisa Capaldini are three of them.
Three faces of AIDS, one message for a country where more than half a million people have died: 25 years is not such a long time.
___
Cameron Siemers, 24, infected during a blood transfusion as a toddler
LOS ALAMITOS, Calif. (AP) — Cameron Siemers had a big secret until he was 18. When he decided to give it up, he did so in spectacular fashion, telling his entire high school graduating class that he had AIDS.
"It was hard because I knew all these people," Siemers said of the commencement speech. "I just wanted to give them something because we were graduating. ... And just to get it off my chest, to let them know."
The revelation explained why Cameron was small for his age and missed long stretches of school in this Los Angeles suburb. When friends wondered why he could never have sleepovers at their houses, he always had said he had hemophilia, which was true. That's how he got
HIV.
His doctors think Siemers got tainted blood in a transfusion when he was 3 years old, but he wasn't diagnosed until he was 7. His mother gave him the news while they were playing Legos.
"I knew what it was and I knew what it meant, but I didn't think of it as a death sentence," he said.
As he's gotten older, it's gotten harder to hold onto his innocence. Siemers is among the minority of patients whose AIDS has proven resistant to the drug "cocktails" that changed the course of the disease. So even as treatment options have improved, he has gotten sicker.
He almost died two years ago after his inflamed pancreas started bleeding uncontrollably, a chronic condition associated with HIV. Recently, he was on a new drug that looked promising, but he had to stop taking it because the medication exacerbated the abdominal pain from his pancreatitis. His doctor is trying to get him enrolled in a study for another drug.
Looking back, it's easy to regret the things he hasn't been able to do that other guys his age take for granted. Asked for an example, he doesn't skip a beat: "Dating."
Siemers isn't sure why he grew up thinking AIDS was something he had to conceal from all but a few trusted friends. After he revealed his secret, he felt blessed by all the support he received.
While Siemers has contempt for infected people who conceal their HIV status from sex partners, he doesn't think of himself as morally superior to those who acquired the virus through unprotected sex or intravenous drug use.
"I've met a lot of people with this disease and they range from every ethnicity and every gender and they are just people trying to get though it," he said. "AIDS is not prejudiced. It will attack anybody."
_____
Lonnie Payne, 53, diagnosed with AIDS in 1986
SAN FRANCISCO (AP) — The same month Cameron was conceived, Lonnie Payne moved from Chicago to San Francisco with his lover, Joel Swandby.
In April 1981, the city was "the gay Mecca of the United States," and Payne and Swandby reveled in the freedom of living in a place where men could love other men with abandon.
Although Payne remembers hearing about a strange illness that surfaced in the gay community that year, it took time before "the rumor started getting longer" and reality set in. Once-beautiful men walked the predominantly gay Castro District like living skeletons, their sunken cheeks bearing the telltale lesions of Kaposi's sarcoma.
Not long after the first HIV tests became available, Payne, Swandby, Payne's twin brother, Lawrence, and the brother's partner, Timothy Bollinger, decided to get tested together, "as a family."
"In those days, there was this fear of being identified, so I remember not even using our real names."
All four men tested positive.
"In '86, that was a death sentence. We didn't know how long we had to live," he said.
"On one level we were like, 'OK, we have this bug. We are going to do the right things and stay healthy.' On the other hand, there was this fatalistic effect happening, where it was like, 'If I'm going to die, why should I worry about following some regimen?'"
The signs surfaced soon enough. Infection after infection broke through the men's weakened immune systems, and the drugs they were taking had debilitating side-effects. Those years are a blur for Payne, who was taking care of Joel while coping with his own illness. In 1994, Lawrence Payne died, followed by Bollinger in 1995. Swandby succumbed in 1996.
"It's hard to think back through that darkness for me at times," Payne said. "I never thought I would be in a world without my twin brother. ... It was like everything I knew that was comfort was eroding."
For reasons that remain a mystery, Lonnie Payne stayed strong long enough to benefit from a new class of drugs that hit the market around the time Swandby died. He thinks he'd be dead, too, were it not for the protease inhibitors that ushered in the era of so-called "cocktails."
"They were horrible and they were nasty. The side effects were everything you have ever heard — the diarrhea, the neuropathy," Payne said. "But for me, the reality is that they were working, and it changed my outlook on life.
"I started with an attitude of, 'I will try to see if I can make these drugs work because I'm really not ready to check out yet. There's a reason why I'm alive and the other guys aren't, and I just need to find out what it is."
Another decade has passed. To look at Payne, one would never know how sick he was. He retired in 1996 from his marketing job with a telephone company and volunteers as a director for two AIDS organizations. He is 53 years old when he never expected to see 40.
"I love the fact that we consider ourselves long-term survivors of AIDS and not people living with HIV and AIDS," he said. "Because we are survivors, and whatever has come up we have navigated through it, sometimes with great success and sometimes with just passable success."
____
Dr. Lisa Capaldini, nationally recognized HIV expert
SAN FRANCISCO (AP) — In her solo medical practice in the Castro District, Lisa Capaldini sees a lot of HIV patients. She once treated Lonnie Payne's late brother and partner.
Some suffer from a sense of spiritual ennui she calls the "Lazarus Phenomenon," after the figure whom Jesus brought back from the dead in the biblical story. Well enough to know their limitations but too sick to work full-time, they are the epidemic's walking wounded, Capaldini said.
"They are a little bit lost souls," she said. "They may have sold a business or never finished school because they didn't think they would be around. Now what they are dealing with is, 'I may live another 20 or 30 years. What does surviving this mean?'"
Capaldini first encountered HIV on a medical school fellowship in 1981. Her first AIDS patient two years later was an intravenous drug user who was going blind from the disease. She remembers her tears of impotence when she sent him home to die.
San Francisco General was one of the first hospitals to have a dedicated AIDS ward, and as a lesbian herself, she gravitated to the epidemic that was hitting gay men. Even as a new doctor, she became a nationally recognized expert in treating an illness with which no one was experienced.
These days, the type of care she provides is different. A decade ago, her waiting room was full of people getting ready to die.
"I have more patients with HIV in my practice than I ever have, but I am spending less time with them than I ever have," she said.
The challenge today is not to get complacent about HIV, she said. Patients must adhere closely to their drug regimens to avoid developing an immunity. That can be difficult.
There are complex psychological and sociological reasons why HIV patients fall off their meds, such as domestic and economic problems.
While Capaldini thinks the early years of the epidemic helped "humanize" gay men in America, HIV still carries a stigma, especially for heterosexual women.
"If you are a woman and you have HIV in 2006, you are either a slut or a druggy. People want to know how you got it," she said. "Having HIV remains a stigmatizing thing. It's not ever going to be a chronic condition like emphysema or diabetes."
http://news.yahoo.com/s/ap/aids_at25_3_faces - source
This article made me cry.
Twenty-five years. I'm almost twenty-two years old...
I think back to all that my parents suffered with AIDS, and my struggle with this disease pales in comparison. They dealt with the stigma and faced the fact that their lives were over. I at least am able to forsee living... They weren't allowed that luxury.
Whenever I set out to write something about this disease and my life living with it, I am struck speechless. I never know quite how to phrase all the things I think and feel. I have 21 years of anger, hatred, saddness, fear, and emotions I can't even begin to put a name to. I just get so overwhelmed.
All I can do is live my life, day to day, without giving this illness much thought. Even though it tore so much away from me, my brother, my family and my friends.
This disease has robbed me of so many many things, but a part of me can't help but be thankful to it - as stupid as that sounds - because it made me who I am. It made me see things in a way that I know I wouldn't have seen them otherwise. For all that it took away from me it has given me almost as much in return.
I hate this illness. I hate it for making my life so very different that everyone else's, for orphaning my brother and I, for taking away my career, my health, and for the inevitable fact that my brother, my family, my friends, and my husband are going to have to watch me wither away as I did my parents.
I just get so overwhelmed with every emotion this topic brings on me...
I know this post is really incoherant, and for that I am sorry.
Please, just know that this disease is not prejudiced. It will take anyone. Protect yourself. Protect those you love. Get tested.
And for the sake of those of us already living with this, don't believe the stigma. It's hard enough. We don't need that.
And remember those already lost to it.
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