Showing posts with label healthcare. Show all posts
Showing posts with label healthcare. Show all posts

Thursday, December 08, 2011

AIDS drugs are safe.

Study shows longterm use of AIDS drugs is safe.


Michael CarterPublished: 08 December 2011A large international study has provided persuasive evidence of the long-term safety of antiretroviral therapy. Writing in the online edition of AIDS, investigators from the EuroSIDA study report that prolonged use of antiretroviral therapy did not increase the risk of death from non-AIDS-related illnesses.
“The main finding of our study was that there was no evidence of an increase in the risk of any non-AIDS-related death with prolonged exposure to cART [combination antiretroviral therapy],” comment the authors. “The results are reassuring that so far prolonged use of cART does not appear to be leading to increased risk of death due to some previously identified cumulative effect, or a drug effect whereby there is a long induction period before disease appears.”

Saturday, June 04, 2011

CNN Heroes spotlights African AIDS Activist.


During the 1990s in rural Kenya, Patricia Sawo believed that HIV/AIDS was a punishment from God.   When she discovered she was HIV positive, she prayed and fasted for years, hoping that would heal her.  When her condition became public, she and her husband lost their jobs and their home because of the stigma surrounding the disease.  Eventually, Patricia not only realized that she’d been wrong, but also that public attitudes about HIV in Kenya needed to change.  Now, she works to educate her community and care for those impacted by the disease, including the nearly 100 children she supports through her Discover to Recover Centre.

The link to Patricia’s story is available here http://on.cnn.com/h0VOJM.


Wednesday, May 18, 2011

The Emergency Has Passed.

I never saw the stone pass, but Sunday night, I woke in the middle of the night feeling the need for a gigantic pee. Stumbled to the bathroom and was in the middle of a very sweet relief when it suddenly dawned on me that I was not hurting.

Until this night, if I woke up at 3am, it was because the narcotics had worn off and I was in so much pain, I couldn't bear to breathe, much less lie there. It was all I could do to swallow more pills and beg God for mercy.

In fact, the night before, I was starting to panic because I knew I only had enough pills to last about a half more day. The prescription was helpful, but far from adequate. How much longer could this go on? What was it? Five days now in absolute torment?

But to suddenly, out of the fog of sleep, standing there in front of the toilet, remember that I had been in pain in what seemed like an eternity, it dawned on me that I was no longer hurting.

I wanted to dance, fly, crash through walls and celebrate!!

I went back to bed, cautiously optimistic.

The next morning, I felt fine for the most part, but there was residual pain in my back. I told myself it was probably soreness from all the trauma of the past five days. So, rather than the narcs, I took a few Motrin PM and laid down for most of the day, after a horrible morning of nausea and dry heaves -- no doubt, by body throwing off the narcotics.

However, that night, Jim was singing at a big event (which I will detail in another post) which I did not want to miss. So, I swallowed and few more Motrin and joined him.

Physically, I was still hurting a bit -- but what a difference between "hurting" and "agony" -- so I took it easy, enjoyed myself, felt so proud of Jim, and was happy I went. But I was tired. So very tired.

Tuesday, the pain was now completely gone. No Motrins. But I was weak. When I held my hand up, it shook like a leaf in the breeze. So, I stayed still and assured Jim that I would be okay, even though he was taking off for Massachusetts to perform Zero Hour for the next three weeks.

This morning, I feel weak, but gaining strength. Jake came over and helped me shop. Since he is our apartment sitter and works nearby, he can look in on me whenever I need something. I also have a ton of other friends who've all volunteered in case I need something.

But to go a full day without pain -- and without pain pills -- is the greatest gift of all.

So, thanks to you, dear reader, for abiding with me during this. I will try to update more often. If you're on Facebook, you'll get more up to the minute news. But, man, what a traumatic, horrible experience this has been. And for a guy who takes a ton of drugs just to stay alive, I HATE pain killers, and I especially HATE narcotics.

Now I can go back to my nice, normal routine of trying to fight off AIDS and getting my blood sugar back to normal.

And writing music! (I have more news about that, too).

Monday, March 21, 2011

Adding Insulin, pt. 2

Yesterday, after getting home from church, I had this weird, weird feeling in body. It's like something was in my chest trying to claw its way out -- and I felt hot and flush. It was all I could do to lie down on the couch and just stay still.

We had tickets to what Jim said was a lovely revival of "A Tree Grows In Brooklyn," produced by the Peccadillo Theatre Company, but I literally couldn't move. I didn't have a fever or anything, but I knew I couldn't sit up in a seat.

Later, when I spoke with Mark Janas, he said it sounded like a Niacin flush.*** And it kind of did. I've had those before, but I had taken my prescription Niacin hours and hours before -- and never had this kind of reaction. So, I don't know what it was.

The thing is that I take so many drugs for so many things, it could be they were all having a party in my body and forgot to send me an invite.

I finally fell asleep, and when Jim home, it had mostly passed, but not entirely. I still felt this weird tenseness in my chest. So, sadly, I skipped the Salon and just stayed on the couch, drifting in and out of sleep all evening long.

I was also wrestling with the new insulin regimen. When I began it, the instructions were to start with 10 units at bedtime, ramping up 3 units every three days until I finally got it under 120.

But, strangely, for the first week, the results stayed absolutely the same: 185, 175, 187, 180. etc. I dialed the injector pen up to 13 and then 16. Same results. 186, etc.

So, Jake asked me if I had let it get down to room temperature, that his mother takes insulin and that when it gets to room temp, it's no good anymore. Well, yes. On that first day, I had taken the pen down to the hospital to learn how to use it, and had left it in my pocket all day, no getting it back into the fridge until that evening.

So, I found the instruction sheet and discovered an even more puzzling set of instructions. According to this, once the pen has been used, then you're SUPPOSED to leave it at room temperature and NOT re-refrigerate it until it is used up. (There were instructions for three different kinds of injector pens, all with different instructions).

Okay.

So, I threw away the injector pen I had been using and started fresh with a new one last night, dialing it up to 16 units.

This morning, my blood sugar was 140.

Much, much better. And that was after a meal of Chinese food that was a little bit high on the carb side. So, this time I'm leaving the injector pen in the drawer and not putting back in the fridge, per instructions. And we'll see how well it works tonight.

There's an additional problem I'm having, though, and that's trying to figure out where to inject the insulin, which needs to be done subcutaneously, into the lining of fat just below the skin.

The problem is that one of the side effects of my AIDS drugs is lipodystrophy, which strips the fat from beneath your skin in your face, legs and butt. The insulin isn't supposed to be shot in a place where lipodystrophy has occurred, which is my whole body, essentially.

If I pull my skin up in my fingers, it's as thin as tissue paper. Meaning I can't grab a big handful and push it up to make a nice cushion. Beneath that skin is just muscle.

So, at this point, I think I'm doing it right. But it's really hard to tell. Jim can't really help me, as much as he wants to.

It's just another instance where I'm "going it alone" and trying to do the best I can. Meanwhile, though, 140 is not bad. I'll do 16 units again tonight and if it's not below 120, maybe dial it up to 19 units the night after.

**EDIT UPDATE: The Niacin was not the issue. How do I know? Because, somehow, I had neglected to refill that prescription. The list of refills is so long, it just got by me. So, now I have no idea what yesterday was about.

Monday, March 14, 2011

Adding Insulin.


I love this picture of Jim, doing a Russian pose.

As I sat in the waiting room at the hospital clinic, waiting my turn, a man walked in wearing very silly clothing, balancing a plate on a stick.

He looked over at me and said, “I LOVE THAT BOOK!”

He was referring to “The Island at the Center of the World” by Russell Shorto, a book I cannot put down. It’s a history of early Dutch Manhattan, one that was lost for a very long time due to the fact that the English were at war with the Dutch and they wanted to make it seem as if they invented the United States -- and one that is still be translated from stacks and stacks of old Dutch documents uncovered in recent years.

I was a bit startled by the attention, but the invader went back to twirling the plate on the stick. He was very funny. I whipped out my video camera, but he said he did not want to be posted on the Net. However, I could shoot it just to prove to my friends that I was seeing what I was seeing.

I learned later that he is the clown for the pediatric clinic, and the four women who man the front desk at the clinic love it when he drops by. Usually, the clinic is filled to capacity with people, waiting their turn to see a doctor.

The moment of lunacy and joy is welcome in a place where most people are feeling sick or scared of doctors and institutions.

I have been to this place when it was packed to capacity and tensions are high as people wait for their turn. The women behind the desk all stay very cool and manage to do coordinate everything really efficiently, with equipment that I don’t believe is the latest in high tech design.

When my name got called -- after a waiting period to get my blood tests from my primary clinic -- I met with a very attractive. young female Asian intern (?) who took my health stats and asked a bunch of questions, like what medications do I take.

I hate this question. The list is long and I can never remember the names of everything, not to mention the dosages. I had a list in my wallet, but it wasn’t there.

“There’s the little blue one for blood pressure, but it used to be a different color. It’s a generic”. Or is that the thyroid pill? Actually, they’re both blue and so is one of my diabetic pills.

It can be very confusing to be a walking chemical experiment.

Eventually, after she took some vitals and asked a few questions, “What do you take THAT for??” a rather hurried middle aged doctor came in, but he got a phone call, so he turned me over to a more senior doctor who I immediately fell in love with.

I mean, right out of central casting. He had bushy eyebrows and a kindly crinkle in his face.

She looked down at her notes and began reporting, “The patient is 57, has AIDS, diabetes and...”

He listened to the list and started peppering her with questions. She was clearly trying to maintain control as he corrected her assumptions, or questioned her recommendations, all part of the game.

It was an episode of HOUSE!

The sum of it all was that I was maxed out on pills, that my A1C was now over 9, and too high, and that it was time to start me on insulin injections, news I was prepared for, but not really excited about.

“Start with 10 units. One shot every evening before bed. Test your blood in the morning. We need to get it under 120. Do it for three days, get the average. If it’s still too high, increase the dose by 3 units. And do this every three days until you get it under 120.”

I think my mind started to wander at bit at this moment, though I was concentrating really hard and even repeating instructions back to them, verbatim. Mouth moving. Mind in Miami, thinking about New World Waking and how the rehearsals are going.

10 units. 120. Three days. Three units more. Come back on Friday and a nurse will teach you how to do the injections. This was Wednesday.

On Friday, the nurse strapped this pin cushion to her leg. She took the demonstration injection pen -- I hadn’t needed to bring mine along, though I had it with me -- and dialed it up to 10, then 50 and 100 to show me how easy it is to get the proper dosage.

She handed the pen to me. When you roll it, the numbers fly by and it sticks out more from the end of the pen. It was kind of fun, to tell you the truth. I had this feeling, suddenly, of being more in control of my blood sugars.  

Someone asked me how I keep up such a good face -- and the answer is I don’t think about it. It just is. Also, there is always someone worse off, and I should be grateful for what I do have.

Like Japan, just now, with a tsunami and earthquake. Nuclear plants collapsing. Christ, the entire earth was thrown off its axis.

The images of tidal waves and the reports of thousands of dead. It makes all the stuff in the Middle East seem kind of stupid. In Japan, the earth buckles -- and over in the MIddle East, all the problems are man made.

Those types of problems -- the type that have to do with how human beings treat each other, and who has the most power, money and influence -- can be changed in an instant if, suddenly, everyone just stopped, took a look around, sat across from a table, and came to a mutually and collectively fair agreement.

Peace with justice. Justice with peace.

In fact, in this book about Manhattan, we’ve arrived at one of the moments that changed the course of human history, was when a philosopher named Grotius suddenly put out the idea that man’s natural state of nature was peace, not war. Until then, the author states, everyone in history just assumed that you had to always be at war with someone, always in alliance with some against another.

This was also how the Indian nations around this area functioned. If you signed an agreement for a piece of land, you could live on it, and their tribe could hunt on it, but you had signed yourself up as an ally against whichever this Indian tribe deemed as “enemy.”

For the first time, Europeans sat around a table, decided to end all their wars, which they did, kind of, and went on their merry way.

We know, of course, that that agreement did not end War. But it did prove that reasonable people, if prodded, and with a little faith, can stop shooting each other, at least for a little while. And they can do it by just making the decision to stop. A change of mind.

In Japan right now, they cannot fix things by changing their minds.

And now I realized I’ve gone far afield, but there is a point.

I told Mark Janas, yesterday morning in the cab as we were zipping down to Bay Ridge, where I sing in Mark’s choir at Christchurch Episcopal, that I remembered telling the POZ Magazine reporter, Degen Penner, that I felt sometimes like an old tire being reinflated.

After three days, my morning blood sugar has been testing in the 160 - 180 range. So, last night I dialed up to 13 and tried again.

179.

Hm. I wonder if I should raise the unit level more quickly?

This is on 57th street, but since we're going to Brooklyn...
Jersey looks beautiful this morning, the sun hitting the buildings as it rises.
I want to have a show here some day.
Times Square, going to Christopher Street. I took the 3 train.
We stopped here at 14th Street. I changed to the 1.
Now, I'm back at the Starbucks, sitting in the window.
...reading my book, waiting for Mark and James.
Our choir robes are in these closets.
I think these robes are for a different congregation that meets here.
Mark Janas and Fr. Jeff meet to look through the music.
Lent has started and now the music changes a bit.
There I am looking down at the music.
Flagg Court. Where Jim grew up, across the street from the church.
On the way back home, we walk to the subway on 3rd. We pass these row houses.
Not the biggest front yard in the world, but you work with what you have.
And down into the subway back to Manhattan.

Friday, December 03, 2010

I'm Number Five!

Hello Steve

I just wanted to inform you about a new piece we've published over here at LPN to RN Blog called "Top 50 Blogs About HIV and AIDS." I found Bonus Round to be very interesting and relevant, so I thought that both you and your readers might enjoy the article. Please do let me know if you have any questions or comments --
http://lpntornbridge.org/2010/top-50-blogs-about-hiv-and-aids/
Warm Regards,
Alba Collazo
Co-founder, LPN to RN Blog

I went there and saw I'm number 5! So I wrote this Alba back and said, "I claim FOUL! That nasty little Shawn Decker came in number 1! That's so wrong! Why... why... why... I was the one who talked him into his online blog/diary in the first place!"

Okay. No, I didn't. I think, actually, this is the first time someone's put me on a list. I wrote her, thanking her very much for the honor, and also mentioned that since my mom is a retired RN, nurses mean a lot to me. They're the real front line of health care, and there's not a doctor who will disagree. (Okay, maybe one or two, but then we wouldn't go to that kind.)

Thanks. As a matter of fact, one of the men I met at the University Glee Club asked me if I ever did health-related concerts for schools. (Yes, I do.)

Wednesday, October 13, 2010

A Tearful Visit to Columbus.

"Don't run."

That's what Dr. Anthony told me just as I was leaving his office. So, on Sunday morning, at 4:50am, as I ran to the Newark/Manhattan bus, departing Port Authority at 5am, my back heel hit the carry-on bag, rolling behind me, and I hurtled through the air, hitting the ground hard, my left arm finally hanging useless at my side. 

I determined it wasn't broken, but it hurt like hell. I almost decided to not go. But I couldn't miss this.

Though I wasn't getting paid, people were depending on me, having raised the money to pay for the plane ticket. So, I forged ahead, got to the station just in time, and took off for Columbus to play two concerts for the health care workers at a hospice, and then, later at a hospital.

Getting from Newark was another adventure. Just as we got on the plane, it has a "mechanical," and I had to stand in line, change carriers, go to a different terminal and go through security again. The first time was difficult and painful enough, as I was unable to use my left arm to buckle my belt, lift my carrying case or tie my shoes without screaming.

I went to the other terminal, got the new ticket on a different carrier, stood in line, and was told that the plane would be leaving from the first terminal I had just come from.

Sighing, I went back to the first terminal, went through security, found a pharmacy, got a sling and some motrin, waited two hours and got on the plane.By now, I'm hurting so badly, all I can think is, "How will I ever play the piano?"

When I landed in Columbus, Brian, Sarah's adorable bear husband, picked me up. The kids, who I hadn't yet met, were in the back seat. 

Sarah introduces me at Kobacher House hospice.
I met Sarah -- she was single at the time -- almost from the first day I set up this diary in 1996. In fact, as she introduced me the next morning, at the hospice, before my "show," she reminded me that this Bonus Round site was actually the very first web site she ever logged into, having just gotten her first computer.  

She explained, "At the time, I was working with dialysis patients, and I felt Steve's entries were inspirational. So, I would print them out and read them during the treatments. Then, one day I asked him to come sing for us, and he said yes. This was 10 years ago."

I looked at the 30 or 40 hospice workers sitting in front of me. People who spend their lives tending to the dying. And not just the dying, but the dying and their families. 

Some families, so racked with pain, they can't even speak to each other. Some families, prepared and peaceful. These people work through all that, trying to make sure the patient is comfortable and at peace, while helping the family make "decisions" they usually don't want to make.

Each nurse, aid, doctor and lab tech is a part of this journey, and it takes a huge toll on them. 

And that's why I was there. I went through it all as a patient. My mother was a Registered nurse. My father was a minister. I watched how they ministered to people in pain. I knew the emotional toll it could take on them, long after they left the "office."

Imagine, reader, having a job where every single person you treat dies.

How fast can you fall in love with another human being? And how far to do you allow yourself to care, knowing that person is not going to last very long? Or is constant pain? 

And, speaking of emotional toll, all of us were drenched in tears. At one point, one of the nurses, noticing my kleenex, pilling up on the piano, brought up a trash can. I said "We're gonna need a bigger boat."

These people have created a support system for just the workers. I was so proud to be a part of this program. As a patient, I thanked them for their work, I told them I understood that this kind of work is a calling, and not just a job. 


I didn't think about my arm during the two hour concert. I don't remember feeling pain, but I think it's because my mind was elsewhere. I knew I couldn't play strongly or as percussively as I enjoy. 

Brian made me breakfast, earlier, dressed in a chef's hat.
After the show, Sarah took me back to her house, where I slept all afternoon with Uno, the one-eyed dog. He laid down next to me in the bed and didn't move a muscle until he heard the door open downstairs, when Sarah came home to fetch me for the evening gig.
The venue, at the neighboring Riverside Hospital, was much bigger. And I had a magnificent Yamaha piano. Also, my arm wasn't hurting quite as badly and I was able to play with a big more aggression. It was very exciting.




I didn't cry this time, having gotten it all out in the earlier show. My voice was strong, and I told stories and sang for two hours. We also engaged in a dialogue, as we shared stories and I answered questions.

By the end of the night, after getting about a thousand hugs, we went home, and I miss them, already. I also miss Sarah and Brian and the kids. Talk about falling in love.


Uncle Steve with his two new favorite human beings on earth.


Sadly, though, I came home to an empty apartment. Jim is in Florida doing Zero Hour for the next 10 days at the Maltz Jupiter Theater. (Lucky them!) But, there's lots of things for me to do, including working on a brand new production of New World Waking in Miami by the Gay Men's Chorus down there. But I'll save that for another blog entry.

Tuesday, December 08, 2009

A New Way to Attack AIDS?

My Friend, Michael Sugar, pointed me to this article about a possible new AIDS therapy, using stem cells to help the body fight off AIDS and other chronic illnesses.

UCLA researchers demonstrate that stem cells can be engineered to kill HIV

Innovative strategy could be effective against other chronic viral diseases

Researchers from the UCLA AIDS Institute and colleagues have for the first time demonstrated that human blood stem cells can be engineered into cells that can target and kill HIV-infected cells — a process that potentially could be used against a range of chronic viral diseases.
The study, published Dec. 7 in the-peer reviewed online journal PLoS ONE, provides proof-of-principle — that is, a demonstration of feasibility — that human stem cells can be engineered into the equivalent of a genetic vaccine.
"We have demonstrated in this proof-of-principle study that this type of approach can be used to engineer the human immune system, particularly the T-cell response, to specifically target HIV-infected cells," said lead investigator Scott G. Kitchen, assistant professor of medicine in the division of hematology and oncology at the David Geffen School of Medicine at UCLA and a member of the UCLA AIDS Institute. "These studies lay the foundation for further therapeutic development that involves restoring damaged or defective immune responses toward a variety of viruses that cause chronic disease, or even different types of tumors."

Friday, September 18, 2009

A Grass Roots Fundraiser for a New AIDS Vaccine.

AIDS vaccine trials have been mostly disappointing because, as the virus mutates, the antibodies that attack the virus becomes ineffective. Sometimes the tested vaccines actually make things worse. So, the medical establishment has been at a kind of standstill on the subject. Also, as I learned from a class where I was a guest at the Stanford School of Medical Ethics, drug companies make a lot more money by selling drugs to long-term diseases than by curing them.

Therefore, when biochemist and immunologist Sudhir Paul at the University of Texas Medical School in Houston discovered a weakness in the virus -- an antigen discovered in people with Lupus -- which manages to disable the virus across multiple permutations, they became very excited and are ready to move into human studies of a new vaccine based on the research.

News article in Washington Post.
And more information here.

So, to that end, they are holding a fundraising event in New York to get funding for human trials. Here is the information from the press release:

CIF (Covalent Immunology Foundation) is a new non-profit organization created to raise money to further the research of Dr. Sudhir Paul who is on the cusp of creating a revolutionary vaccine for HIV/AIDS.

Dr. Paul has dedicated the last 26 years of his life to searching for a cure for HIV after accidentally discovering antibodies with catalytic activity in one of his patients in the 1980’s. With the help of over $30 Million in NIH grants, Dr. Paul has developed a prototype vaccine that successfully eliminates nature’s restrictions on production of protective antibodies to HIV by the immune system.

The Foundation's efforts will be jump-started by HARD MEDICINE, a 300 person gala at the Red Bull Event Space in SoHo, NYC on September 24th. Guest of honor Dr. Paul will be joined by a diverse group of influential young New Yorkers and celebrities from the worlds of fashion, music, art, and media who have come together to donate their time and efforts for the good of one doctor’s remarkable work. The evening will feature a musical performance by Amanda Blank, a limited edition gift from Bing Bang Jewelry and a silent auction with original artwork and items from exclusive fashion labels including DVF.

And we all have our fingers crossed.

Sunday, September 06, 2009

Is It Time to Drop the Name "AIDS?"

An article appears today in the LA Times asking if it's time to end the "stigma" associated with HIV by ending the use of the "AIDS."

The writer says:

The Centers for Disease Control and Prevention classifies someone with HIV as having AIDS if their T-cell count -- the white blood cells that HIV attacks -- drops even once below 200; if the T-cells make up only 14% of all their white blood cells; or if they have one of about 26 "AIDS-defining" infections that prey on a weakened immune system.

If you think it doesn't matter whether you are described as HIV-positive or having AIDS, think again.

I should know.

Shortly after I was hit with the news that I'd tested HIV-positive in 2005, I was hit again with a test result showing I had a T-cell count of only 198.

"That's an AIDS diagnosis!" I exclaimed to my doctor. Learning I was HIV-positive was shocking enough. Confronting the fact that I would always bear the highly charged, confusing and stigmatized label of "AIDS" was overwhelming.

Nearly four years later, antiretroviral therapy and good healthcare have strengthened my immune system. My viral load is undetectable. If I didn't know that I have HIV, I wouldn't know because I have never been sick.

Yet I'm dismayed to think I am still considered a "person with AIDS."
I have to confess that this thought never crossed my mind. Maybe it's because my mother's a nurse and, for me, I feel no "stigma" associated with having a disease. But this writer feels that by calling what he has "AIDS," it's like carrying an additional burden.

I just don't get it. If you don't like the word "AIDS," then say HIV positive. It sounds to me similar to closeted people, or "exgays" (who don't have gay sex) not calling themselves "gay," but instead want to be called "same sex attracted" because they think by calling it something else, it's not there anymore.

But, then, I have been deathly ill with AIDS and have never felt the slightest embarrassment or shame in telling people I have AIDS. Would I also feel embarrassed telling people I have cancer (if I had it)? It's just a diagnosis of a medical condition. It's not like confessing to being a child molester. I just don't understand why it's a "stigma." What's there to be ashamed of?

Yesterday, we were having lunch with Aviva Kempner (the filmmaker who made the outstanding new documentary "Yoo Hoo, Mrs. Goldberg" -- if it's in your town GO SEE IT. It's about the now almost unknown Molly Goldberg who once was the most famous and celebrated woman in America) and when the conversation turned to me, and the other lunch guests asked me about myself and my music, I mentioned, without a bit of hesitation, that I had AIDS and that I had written a bunch of songs about it.

She asked, "So, you have AIDS and not just HIV?"

The question actually stopped me for a moment. I never considered there was a difference, but I suppose there is. For me, the two things are the same.

So, perhaps I'm living in some kind of unreality. AIDS. HIV. Meh. You have a virus. You take daily medication to fight it back, and it's a constant struggle to not get sick. What's the big deal? I was speaking with a friend yesterday who has clinical depression. He also takes daily medication and it's a constant struggle for him.

Everybody has their Achilles heel. Everyone has something they struggle with, and whether their "sickness" is of the mind or body, staying alive and sane in this world is a daily battle.

Welcome to life.

Friday, September 04, 2009

New Hope for AIDS Vaccine?

New hope for AIDS vaccine?

The discovery of antibodies that bind to a hitherto unknown "weak spot" on HIV has revived hopes that a potent vaccine is within reach.

Now that the weak spot – common to many strains – has been discovered, researchers can aim for vaccines that trick people into making their own antibodies to target it.

"It's the discovery of the target that's the key thing," says Wayne Koff, senior vice president of research and development at the International AIDS Vaccine Initiative in New York, and a key member of the team reporting the breakthrough.

Tuesday, July 21, 2009

Monday, May 04, 2009

A Butt for Me?

"Hey!!" Said Heidi, who was over here this past weekend with her husband Tom, for her birthday. "You look good!"

I was, at that moment, bending over to get something out of the fridge.

"Really?"

"Yeah. In fact, you look real good."

Heidi was looking at my butt.

Since no one has ever complimented my butt before, I was somewhat taken aback. Why? Because I don't have a butt.

I have written a lot about the fact that the AIDS medications, while saving my life, have also caused some weird side effects, one of which is that it moves body fat around your body into inconvenient places. Or worse, moves it FROM the places that you WANT it. More specifically, my butt.

I have always had a relatively skinny ass and never gave it much thought, frankly. I'm not really that vain. I don't color my hair or pluck my eyebrows. I have no designer clothing and when the movie "The Devil Wears Prada" came out, my first question was "What's a Prada?" (Yes, I'm a bad gay).

So, when the AIDS meds took away what little butt I had to begin with, what bothered me what not so much the aesthetic, but the fact that it's downright painful to sit in most chairs unless they have a really nice cushion.

This mean that on park benches, subway stops, public transportation, theatre seating, I'm usually in a lot of pain -- and it annoys anyone sitting next to me to watch or feel me squirming and moving around trying to find a way to be comfortable for a few seconds. But that's as long as it lasts. And then I'll be moving and shifting again. People hate sitting next to me.

But it can be serious problem. For instance, when Cirque De Soleil first came to L.A., they were in a circus tent and we sat on these long benches. Well, I was in such pain, I couldn't focus on the acrobats. I was almost in tears by the time the first act ended, and I begged Jimmy to take us home. It was seriously that bad. You can laugh if you want (I don't mind), but pain is pain, and I have found myself, when I enter a room, immediately looking for the most padded chair possible. It's become second nature to me.

One source of great discomfort that's REALLY inconvenient for me are piano benches. I can last only so long on them before I'm seriously hurting. And that's a bad thing for a piano player.

Last week, I received an email from a person who works for a company called "Butt For You, Inc." She wrote, after viewing my silly animation on bonusround.com:
I was recently doing some research online and came across your website. It's fantastic. The opening alone had me cracking up! I love your sense of humor.

After reading through your blog, I thought of something I’d like to pass along. I actually work with a company that specializes in padded underwear for men and women. Because of the harsh discomforts that medical ailments bring, this item has provided comfort to so many out there with HIV, AIDS and cancer. I am not necessarily sure if this will be of interest to you or your readers, but I really wanted to share the information as many have found much relief from the padded undergarments.
I confess, through the years, I've seen products like this advertised, but I tended to dismiss them because, as you'll see if you click through to Butt For You, Inc., they're mostly marketed as a vanity product, so I didn't take them very seriously. (I also understand why they do that. With our looks obsessed culture, and people padded up their boobs or getting facelifts, it's probably the only viable way to sell things like this in any big numbers.)

And, frankly, looking at the illustrations and the photos, I confess I found them kind of silly looking.

But, because of this, I never spent money on them, fearing that they weren't really a solution to my specific problem. I wasn't really concerned about my ass looking good. I wanted something that would guarantee me some comfort. I wanted a actual clinical solution, not a silly vanity product.

I wrote back to the woman at the company and she offered a product sample, confident that if I tried them, I would like them. And then she said I could say whatever I wanted. I could make fun of them, I could tell the world if they sucked, but just to give them a try.

At first, when they arrived and I pulled them out of the package, I thought, "I'll never wear these. They look ridiculous."

But, I have to confess, from the moment I pulled them on, they were absolutely comfortable. A little weird feeling, like having something in your two back pockets, but the construction of the garment is solid. This is not like buying a cheap t-shirt that falls apart.

At first, I thought the padding was just a bit too high on the hip to work for me, but I found that once I sat, it was easy to get the pads exactly where I need them and they were firm but soft. It didn't feel like I was sitting on a lump (my other fear). I'm also found that they were firm enough to actually matter and make a difference in my comfort level.

I tried something. I went to my office chair, pulled off the extra seat pad which normally sits there and spent a day working at my desk. I spent the weekend going back and forth between my normal undies and these, and I found myself really missing the padding when it wasn't there.

It's clear that they must have spent time working on the exact right size of the pad because, in daily activity, I barely noticed them. (My fear was that they would start sagging or, while walking around, feel like I had too much stuff in my back pockets or they would start to make me sweat and get heavy).

We went to the movies. Total comfort.

Saturday night, though, was the big test. Remember I told you how Berington and I did an impromptu concert when the scheduled artist didn't show up? Well, that was 90 minutes on the piano bench. Not only was I in complete comfort on that bench, but I forgot I was wearing these things altogether. And not once did I squirm or rearrange myself to stop being in pain.

It was a miracle!

So, I confess. I love these things. They might be advertised as just a product to make your butt look good, but they function, for me, as a clinical solution to a really painful problem. They are a bit pricey, as you will see: $30 a pair. But once I saw how much workmanship went into them -- each pad is fitted into a very securely make pocket that's sewn in; you remove the pad to wash -- it made total sense. This is not a fly-by-night product. It's well designed and well constructed.

And, I have to confess, I didn't hate the fact that Heidi noticed how good my butt looked when I bent over.

EDIT: Now you don't have to ask me what to get me for my birthday. I'm a size 32-34. :)

Friday, April 24, 2009

Results of doctor visit.

Said Doctor Ruchi, "Okay, the good news is your A1c is down from 8.7 to 8. So, it's headed in the right direction. But I want it down around 6."

Or maybe she said down around 2. Or negative 20. I forget.

I was disappointed. I wanted to celebrate a really low number by going out and having a big bag of the greasiest KFC possible. With biscuits. Or a huge box of pizza. With hot wings.

"You know," she said. "When you get motivated, your body is really responsive. I've never seen anything like it. So, keep on working it. Get exercise and watch your diet."

Never mind. Break out the bag of spinach.

Tuesday, February 03, 2009

Trial Begins for HIV Gene Therapy.

SyringeGene therapy that could immunize people against the most common type of HIV is ready to be tested on humans. From Wired Blogs.

Recruiting for the trial began Tuesday, and the first people to receive the experimental treatment will be HIV patients with drug-resistance problems.

"We do have good treatments for HIV. That has been one of the most successful stories of the last 20 years in medicine," said Pablo Tebas, an infectious disease expert at the University of Pennsylvania.

"However, over time, if the medications are not taken properly, individuals develop resistance to the HIV treatments, so they tend to have more limited therapeutic options."

Since the discovery that a small portion of people who are exposed to HIV do not get infected, scientists have been working to discover the secret to those people's resistance and how to make others resistant as well.

It turns out that most people have a gene called CCR5, which makes them vulnerable to HIV infections. The naturally resistant people have mutant CCR5 genes that inhibit HIV.

Previously, scientists found that by cutting the CCR5 gene out of white blood cells involved in the immune response known as T-cells, they could protect a tube full of human cells from the virus. The gene editing technique relies on proteins called zinc finger nucleases that can delete any gene from a living cell.

In theory, zinc finger nucleases could give that immunity to anyone.

The procedure is simple: Take some healthy T-cells out of an HIV patient, clip out their CCR5 genes, grow more of these clipped T-cells in a dish, and then put them back in the patient.

"In this first study we will re-infuse approximately 10 billion of these cells back into the participants, and we will see if it is safe and if those cells inhibit HIV replication in vivo," said Tebas. "We know they do in the test tube."

Photo: adamjtaylor/Flickr

Wednesday, December 03, 2008

AIDS Food Pantry in Dallas Needs Help.

This is something I just received. Since I lived in Dallas, and came out in Dallas, I wanted to post this for readers who might want to help them out.
Resource Center of Dallas' (RCD) AIDS Food Pantry is being forced to move from their location after almost 25 years. Many of their clients do not even have the money to take the bus to get their groceries now, so their fear is where the pantry will move to. Even with an end of January extension given, RCD says donations are coming in slower than expected and the initial $25,000 moving budget is expected to increase. The current 20 year old refrigeration equipment will not be able to make the move to a new location, according to an assessment from a refrigeration expert, forcing the pantry to buy a replacement. And once the moving expenses are met, additional money will be needed to buy food for the Center's clients during this time of year. From November through January, the Center traditionally sees an overall 30% increase in food needs with their 2,456 clients of the food programs – and those numbers were in better economic times.

PLEASE donate TODAY. No gift or help is too small.
Online: https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1000661&code=HLM09

Or you can send your donations to:
Resource Center of Dallas
2701 Reagan Street
PO Box 190869
Dallas TX 75219-0869
(214) 528-0144


A personal visit to visit the pantry allowed me to see firsthand the work they are doing. The visit was full of emotions. A long line of people waiting outside a backroom door from a parking lot, hidden from the public, each with smiles on their face, talking with each other and the pantry employees, but I could not help but focus on the pain they must be masking. Each waited their turn to walk through a very small modest corner-grocery-store atmosphere, complete with small two-tier shopping carts. People bumped into each other - only about a 12 people maximum at a time are allowed in the entire room.

A plaque proudly hangs top center commerating 1989, the date this small 4 door refrigerated/freezer was presented as a gift to the Pantry. Milk and some cold items such as small desserts, burritos and individual items are available but there is not enough room to house frozen items contributed. So those meals are now distributed through another program (Hot Meals) through RCD, who started this food pantry almost 25 years ago. A freestanding 2 door refrigerator held some fresh deli items donated by local markets, but due to limited space these items are on a first come first serve basis, and the small case was almost empty just in the short time I was there.

A supervisor, who has worked for the pantry 6 years, told me how contributions are used and how she is able to leverage financial donations through the local food bank compared to the average spending of a person going to a local grocery. If I, as an individual, purchased a can of vegetables that cost a dollar, she can use that same dollar with the local food bank at a comparable rate of .14 per can to my 1.00, buying 7 cans of vegetables to my one. Grocery stores have been incredible with their donations, but it appears only to be chains within their immediate area.

The hot meals program, also run through Resource Center of Dallas, was at one time receiving annual funding from the Ryan White Care Act program however these federal funds have been cut, eliminating the $250,000 federal funding which was the majority of their annual budget over the last 18 months. This budget cut is jeapordizing stand alone food programs used to feed many of the same clients of the food pantry, a daily hot nutritious meal. In order to qualify for the pantry and hot meals program, people must meet a poverty level of 300% below the national level. 300% below!

When asked if items were given for traditional Thanksgiving dinners, the answer was more heartbreaking. With funding less than a shoestring-budget people, who in years past had received small turkeys and trimmings, would this year be receiving a small canned ham, store price of $7. The next time you shop, please go look at how small a $7 canned ham is.

Money is tight for everyone with the turn of our national economical state. As I write this, there is a segment on CNN talking to the founder of an Atlanta food bank echoing this sentiment for mainstream food banks across the nation. Donations are down and the need is increasing. His food bank is local to Atlanta, and not specific to this even smaller group of a forgotten people.

We must make sure that those in need in our community are taken care of.

PLEASE donate TODAY. No gift or help is too small.
Online: https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1000661&code=HLM09

Or you can send your donations to:
Resource Center of Dallas
2701 Reagan Street
PO Box 190869
Dallas TX 75219-0869
(214) 528-0144




Join The Impact-Dallas' Food & Christmas Card Drive has officially begun. We need you NOW! Want to talk equality? Let your heart speak for you!

1. Before December 10th, while you're making out your Christmas or Holiday cards, please send a very special one to our friends at the AIDS Food Pantry and be sure to include a nice crisp $20. This year the food pantry is trying to find a new home plus find funds to meet this already increasing time of year.

Read why this Food Pantry was selected by us to support during this Food Drive: http://jointheimpact.wetpaint..com/page/Dallas

There are over 1000 who benefit from this Food Pantry alone, and 2456 in the 2 programs through Resource Center of Dallas (RCD). They need money to help buy food. Let's see if we can't send enough Christmas cards with our donations so EVERY person receives a heartfelt message from us!

2. Resource Center of Dallas/Food Pantry

2701 Reagan Street

PO Box 190869

Dallas TX 75219-0869

Be sure to sign your card "With love, From , JTI-Dallas

3. But wait! Now please reach out to as many people as you can. Tell your friends, family, co-workers, neighbors, high schools colleges and universities, florists, bakers, mechanics, professors, children's teachers and schools. Print or copy/paste this page and post/email/hand it out. Can't afford much? Your voice could be worth $20 + the number of people you tell! So use it!

Read their story here from our Dallas Team. http://jointheimpact.wetpaint.com/page/Dallas

BahHumBug but still want to spend your dough? Click here: https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1000661&code=HLM09


Wednesday, November 19, 2008

Health Resources from the FTC.

Hi, Steve –


I work for the Federal Trade Commission. I’ve noticed you that you cover a lot of ground – including health topics – in Living in the Bonus Round, and I wanted to let you know about a new booklet and website – announced just this morning – that you and your readers may find informative and helpful.

Who Cares: Sources of Information About Health Care Products and Services is a resource guide from the Federal Trade Commission that points older consumers and their caregivers, family, and friends to reliable sources of information on a variety of health topics, including alternative treatments, generic drugs, hiring caregivers, hormone therapies, and medical ID theft. For more information, check out our news release at http://www.ftc.gov/opa/2008/11/whocares.shtm.

As mentioned in the news release, you can read Who Cares online at ftc.gov/whocares. All of the information in the booklet is in the public domain, so it can be adapted, reprinted, shared, and linked to freely. And in the Partner Resources section on the website – ftc.gov/whocares – you’ll find buttons you can grab for your own site. We hope that you’ll help us get this information to people who might need it.


Consider it done.