Posts Tagged ‘physician’
Revisiting ‘The Real Poz Guys of Atlanta’
Tuesday, October 4th, 2011
During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be two video episodes that remain a true highlight of My Fabulous Disease.
What might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiring… or a complete bore.
I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.
We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.
When “You Gotta Have Friends†was posted on TheBody.com on April 22, 2009, it became my most popular episode to date and received a flurry of comments from across the globe. So many people loved seeing a group of men with HIV supporting one another and having that level of honesty. For many viewers, simply seeing friends with HIV living happily was an inspiration.
They loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. Viewers loved the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team†of physicians and family to combat his disease.
As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.
That would happen a year later, when “The Real Poz Guys of Atlanta†was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,†and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.
There’s no doubt that I will do another episode with my friends again sometime, but I wanted to update you on their lives as they are today.
Eric, who famously declined to discuss his status with most people because “I’m Southern. We don’t talk about such things,†reports that his life is getting even healthier. “I quit smoking after 32 years on tobacco, I joined a gym, I got a trainer, and I have a new consciousness on eating,†he says. “At this rate, I’m going to live forever.â€
Eric is also glad that his Mom remains one of his biggest supporters. But that wasn’t meant to be for Craig, who has lost the mother he so lovingly described in our first episode. “I am still recovering from that ongoing blow and the indescribable loss†Craig told me. “She was one of my best friends and it is still hard to really accept life without her in it.†Craig continues his work as a leading voice for gay men of color and HIV prevention.
The grief is something Eric can relate to, considering the loss of his partner Maxwell, about whom he shared in the second episode. “I don’t want to forget him,†Eric says now. “It’s not really sadness, but more a sense of him that stays with me.â€
Antron has stopped writing in the black journals he brought to show and tell, and uses his laptop these days. That will come in handy for the young writer, who has a new project consisting of poems, short stories and rumination entitled Ayo: Lost and Found.
The advice that Craig had for Antron to carefully consider “who he lets into his life, and into his bedroom†hasn’t been lost on Antron, who tells me, “I have a deeper responsibility to value myself more and form a beautiful relationship with me first before pursuing any one.†He is planning to move to New York in January, and maintains a blog for his writing.
The dating life that James was negotiating in both video episodes has slowed, and for some challenging reasons. “I seem to have developed a fear of discussing my HIV and HepB status with potential dates,†he says. “I’m back on interferon for another 48 week treatment.â€
The grueling treatment hasn’t affected his work as a massage therapist so far, but James is vigilant about the potential effect on his recovery from drug addiction. “Friends are so important right now, making sure I don’t isolate and relapse like I did during the last interferon treatment. I am blessed to have some really great friends.â€
And that sentiment is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.
Do you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.
In the meantime, my dear friends, please be well.
Mark
Tags: culture, family, gay, help others, hiv, physician, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 4 Comments »
Finding Support in an e-Patient World
Monday, September 26th, 2011
You’re part of a healthcare revolution in cyberspace, my friends. It’s changing the way people find treatment information, relate to their doctor, and support one another. And you’re about to meet some of the marvelous people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment – and for the companies who want to reach us as consumers.
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare how to reach patients online. You may remember from my previous video blog “Should AIDS Activists and Pharma Just Get Along?†that my relationship with Big Pharma is a complicated one, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.
I participated in a gathering of twenty bloggers the day before the conference, all of us living with chronic disease and writing about our experience (watch the episode, and prepare to be inspired).
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions – cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more – and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values – sort of a digital health consumer Bill of Rights. It’s a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as “e-patients,†such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I tend to view HIV/AIDS as “terminally unique,†there’s something comforting about how much I had in common with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn’t the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I’ll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. My fellow workshop participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men’s Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren’s Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Chron’s Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the healthcare revolution will be televised… on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.
Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]
Mark
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PLUS…
Ready for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!
Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.
No sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,†the sperm bank’s director said. “I do not think you chose a redhead, unless the partner — for example, the sterile male — has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.†It ain’t easy being orange.
Tags: aids, culture, help others, hiv, physician, politics, research
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 13 Comments »
How the Denver Principles changed AIDS (and health care) forever.
Wednesday, September 14th, 2011
You must know this, because it matters. Because it has already changed your life and you may not even realize it.
It was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. (And among their number, the inspirational Michael Callen of New York City, pictured at right, and Bobbi Campbell of San Francisco.) They were about to do something that would change our response to AIDS — and health care in general — forever.
As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment†hadn’t yet been a part of the health care lexicon, it was about to be.
The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’â€
The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.†Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.
They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.
They demanded that physicians see their patients as “whole people,†and provide “accurate information.†They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.
They asked “all people†to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.
Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else†for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.
While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.â€
A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.
Longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event last year. He devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That work continues today, with a planned meeting of activists underway to map the criteria of the Index.
Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980’s and 90’s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.â€)
The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.
So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.
(When I was invited to participate in an “e-Patient Bill of Rights Roundtable” at a conference for internet-based health bloggers and web sites next week, The Denver Principles immediately sprang to mind. So why not revisit this part of our history as people living HIV/AIDS and their advocates? This is a revised version of my posting from May 4, 2010. — Mark)
Tags: aids, gratitude, hiv, physician, politics
Posted in Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 7 Comments »
Those Doggone Days of Summer
Friday, September 9th, 2011
July and August were almost frantically productive for me, and I’ve followed it by the longest period of, well, nothing, since I began producing this blog. Sorry. Sometimes an HIV guy just needs to lay around and catch up on Top Chef and Real Housewives (God bless you, Bravo).
Hopefully you caught my most recent videos, such as the my examination of activism in “Should AIDS Activists and Pharma Just Get Along?” (complete with red paint foisting), or the video update on my facial filler procedure with Dr. Gerald Pierone (very informative but not for the squeamish), or the helpful tips for saving money with the knowledgeable Jason King (right) of AIDS Healthcare Foundation, whom the camera adores, and about whom I am harboring a jealous resentment (I may be petty but my grammar is pristine). And finally, it’s always ironic when hours of video editing can’t compete with one written posting the comes straight from the heart, like my tribute to Facebook putting my life together again.
But moving on.
If anyone deserves being highlighted in the media for his commitment to HIV prevention, it’s Jim Pickett of the AIDS Foundation of Chicago. In a well-written profile of Jim in the Windy City Times, you can follow his journey from waiter to activist to the man touting rectal microbicides as the next best weapon in our HIV prevention toolbox (I keep finding myself wearing a sticker proclaiming “I have Rectal Pride!” after visiting his booth at conferences). I’ve admired Jim’s work for years and this fun profile explains why. “Expecting everyone to use condoms all the time is ridiculous,” said Jim in the article. “People don’t want to use condoms their whole life. As great as they can be, there are a lot of issues with condoms.”
At the recent 2011 HIV Prevention Conference in Atlanta hosted by the CDC, I was thrilled to meet some of the dedicated members of the HIV/AIDS prevention team. What was even more satisfying was seeing their new prevention campaign targeting black MSM’s (”men who have sex with men,” who don’t always identify as gay). To date, there have been limited data about the factors contributing to the high burden of HIV among black MSM, particularly those who are young – and yet the latest CDC data show that new infections among this group are increasing every year. Fortunately, the CDC is focused strongly on this population, and previewed a major new campaign being developed to increase HIV testing among black MSM – called “Testing Makes Us Stronger†– as the next phase of its ongoing Act Against AIDS campaign.
Thank God I’m clean and sober and alive today. If I was still an active crystal meth addict, I would have missed an astounding recovery conference during Labor Day weekend, which introduced me to some amazing people and strengthened my resolve to keep working to restore and rebuild my life. While I’m always coy about which method of recovery I have chosen (I don’t wish to promote one over another), I will tell you that my camp alter ego Anita Mann (left) wasn’t coy at all, and — get this — she actually sang live during one of the evening’s entertainments. Alas, neither she nor I sing very well, but the message of recovery is clear, and she shares some funny, wise words with the audience after her song. Watch the clip here, but be kind.
The emotion of “We Were Here,” the documentary about the darkest days of the AIDS epidemic and its effect on a group of gay men, can be felt just by reading the reviews, like the rave it just received in The New York Times. I’m almost nervous to see it because I know the trauma and grief it could summon, but I also know I absolutely must. If you can’t find it playing at a festival or cinema near you, then for goodness sake, go directly to Netflix or some other DVD rental site and put it on your list. I often speak of honoring the past — in fact, my favorite video on this site, “Once, When We Were Heroes,” recounts those days and is always worth another look.
My (healthy?) fixation on repairing my facial lipoatrophy (also known as facial wasting) continues, and I am pleased to report that I have begun treatments with Artefill, the “permanent facial filler” product, under the continued care of Dr. Gerald Pierone in Vero Beach, Florida. My past treatment with other products is well documented, but I’ve got to say that these results are well beyond those of Sculptra or Radiesse, truly. The bad news: Artefill is not approved specifically for lipoatrophy, so there are no patient assistance programs for those of us with HIV, making the treatment expensive (in the thousands of dollars). While I don’t expect many of my fellow HIVers can afford it, I felt compelled to share with you the very positive results.
I am the MC for the annual HIV Poz Cruise Retreat, set for this November 5-12 to set sail from Ft Lauderdale. There was such an abundance of fellowship and acceptance last year that I had to do it again. There are sometimes last-minute rooms and cancellations, so if you would like to check it out be sure to visit the web site. You can also watch my video blog from last year, which gives you a great feel for the event and the fun people aboard. Kudos to the dedicated Paul, a long time AIDS advocate and man living with HIV, who has shepherded the cruises for the last nine years.
Some of the most progressive events for building gay male community and preventing HIV are being developed in the Florida panhandle, of all places. On Monday October 10, I’m honored to be participating in the “Our Gay Generation” forum for gay men in Pensecola, which will explore what it means to be a healthy, satisfied gay man today by looking at our past and rededicating ourselves to one another. Sponsored by the Oasis Community Center (and Butch McKay, the formidable force behind the annual Positive Living conference), the forum transcends political issues like gay marriage, and focuses instead on personal satisfaction, community, and the value of friends. Later in the month, the same group will host a ManReach retreat for 40 gay men at a remote retreat center. Contact Oasis for more information on either event.
Whew! Okay, I’m caught up. Thanks for your patience, my good friends, and please be well.
Mark
Tags: aids, culture, drag, gay, gratitude, hiv, lipo, physician, recovery, Sculptra
Posted in Anita Mann and Acting Gigs, Family and Friends, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 8 Comments »
7 Ways to Save Money on Meds
Tuesday, August 16th, 2011
With all the doctor appointments and wellness activities we engage in, living with HIV/AIDS can be a full-time job. And the truth is, it doesn’t pay very well. We’ve all been feeling the pinch of tough economic times. So I hope you’ll find some savings in this new video blog, “7 Ways to Save Money on Meds.â€
Jason King, a pharmacy specialist and patient advocate at AIDS Healthcare Foundation in Ft Lauderdale, was kind enough to give me a tour of their “Out of the Closet†thrift store and then sit down to discuss ways to save money that your pharmacist might not be telling you.
Most of these tips, by the way, can also apply to medications which are not HIV specific. And we have even included a tip just for our HIV-negative friends. I’m an equal opportunity money saver!
I’m amazed at how many people don’t know about co-pay assistance cards, a program in which the pharmaceutical picks up your co-pay costs. It’s a simple program to use without any income restrictions, and you can save up to $400 per year per medication! Fabulous. Your pharmacy or physician should have cards for you, or Google your medication along with “co-pay assistance†and you should find cards or information to print out.
Specialty pharmacies are a smart move these days. They focus on a particular disease, like HIV, but provide a full spectrum of medications like other pharmacies. The difference is usually service: their technicians are trained in HIV and know more about interactions, for instance, and they are more likely to point out savings opportunities like co-pay cards and patient assistance programs.
When I recently chose a new pharmacy, I went to a specialty pharmacy and just asked them, what can you do for me that Walgreens doesn’t? A lot, as it turns out. They offered free delivery and free shipping anywhere in the continental U.S., and they said they would provide free supplements with a prescription from my doctor! I made the switch, and along with my HIV meds, they provide my vitamins and fish oil at no charge. It pays to ask about perks.
AIDS Healthcare Foundation pharmacy isn’t the only HIV specialty pharmacy in town. Others include BioScrip and Commcare, and they will all ship to you if you don’t have one in your area.
I was intrigued by the idea of buying generic meds from out of the country, but kept getting the icks. What if they make these meds in some ratty factory somewhere with no quality control? I mean, ick.
A little research put my mind at ease. The helpful folks at AIDSDrugsOnline.net reminded me that people have been purchasing medications from Canada for decades because of the low cost. And India, which produces most of the generic HIV meds available, is the 2nd largest pharmaceutical industry in the world, with FDA-approved facilities.
And the prices. Wow. No wonder people who are without insurance (or in the doughnut hole) are purchasing their meds this way. And there are many others players in this game, such as Canada Prescriptions Plus. Shop around.)
The laws are vague about the legality of this, but at any rate are not enforced. Generally speaking, it appears that people can purchase up to a 90-day supply of a medication from other countries as long as it is for personal use. If you’re shopping around and want to be sure the manufacturer is legit, visit pharmacychecker.com to do your research.
Compounding pharmacies, like APSMeds.com, are able to create special versions of generic medications in whatever strength or format (pill, capsule, liquid) that your physician requests. And their product is a lot less expensive than you are paying for the medication in its regular form! Since they only deal with generics, this is a tip for medications like testosterone gels or Lipitor or Flomax.
Finally, there are patient assistance programs offered by the pharmaceuticals that you might qualify for. There are doughnut hole programs for people with insurance that cover your meds when you fall into that financial abyss, and other programs for people with no insurance at all. The best resource online to navigate your way through these programs is NeedyMeds.org.
Between the co-pay cards and the supplements provided by my specialty pharmacy, I’ll be saving hundreds of dollars on my medications this year. I hope you’ll find similar savings.
Now, if we could create universal healthcare in the great United States, we would not be scrambling to pay for medications, and people from other countries would stop snickering and shaking their heads at the necessity of this blog posting.
Feel free to share/post/like this posting, in case it might save your friends some money! In the meantime, please be well.
Mark
Tags: aids, help others, hiv, physician
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 9 Comments »
I’m Gonna Wipe That AIDS Right Off of My Face
Tuesday, August 2nd, 2011
Several years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,†he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant. He knew my HIV status because of the appearance of my face.
I was crestfallen, and felt something close to shame, certainly embarrassment. Why is it that I can produce this blog, proudly march with HIV POSITIVE on my t-shirt in gay parades, and even write a book about coming of age during the dawn of AIDS — but I get upset if someone can tell I’m positive by how I look?
When I choose to disclose, privately or publicly, it’s on my terms. I choose how and when to tell you. I want you to know.
Facial wasting (known as lipodystrophy) takes that choice away. It’s as if the disease is intruding, is taking the upper hand somehow, and worse, taking away my decision about when and to whom I disclose my status. And as much as I want to claim “Most Out Poz Guy Ever,†I don’t like wearing HIV across my face.
Most of us know “the look.“ It’s the telltale gullies and sunken cheeks associated with longtime HIV infection or (more likely) medications (right). Many of my friends and colleagues in this struggle suffer from it, and they may either be comfortable with it, proud of it as a badge of honor, or simply resigned to it. I salute us all, whether our features tells our HIV story or not. But meanwhile, I’ll do what I can to wipe that shit off my face.
A few years ago I visited Dr. Gerald Pierone in Vero Beach, Florida (regarded as the leading expert in fillers and one of the Ask the Experts team at TheBody.com), and I documented that first visit and my facial filler treatments in a video blog, Treating My Facial Wasting (left). In that video I focused on my own attitudes — Was I ashamed? Trying to look younger? Simply vain? — and on the procedure process itself. Nearly a year later I revisited Dr. Pierone and got another treatment and documented it in my video blog, A Facial Wasting Update.
In this video episode of My Fabulous Disease, I revisit Dr. Pierone for a new treatment with the facial filler products Sculptra and Radiesse. While I’m there, I learn enough about Artefill, the only FDA approved permanent facial filler, to make me strongly consider the product the next time my face needs fluffing.
This video also focuses on very specific information about the actual costs of facial filler treatment. Both Sculptra and Radiesse have patient assistance programs that significantly reduce the cost of the medication, but you still need to pay the physician to do the procedure, and that price can vary. TheBody.com has a great article that outlines all the facial filler choices and how much they cost.
Tip: don’t allow any street corner vendor (or gym or even doctor office) to inject stuff into your face. Do some research and above all, find a physician who has done this many, many times (over 500 would be a good start). Be a smart shopper and empowered patient and ask about their experience level first.
I hope you find the video helpful and that you aren’t too afraid of needles!
In the meantime, my friends, please be well.
Mark
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PLUS…
Compelling, sexy, and courageously paced, the short film “SLOW” by filmmaker Darius Clark Monroe is worth your time. In 13 minutes, the film takes two African-American men on a sexy journey in which one of them discovers that the fast way (to sex, to real intimacy) isn’t the only way. If you are working with MSM outreach, this is a wonderful discussion tool. If you appreciate confident film making with a gay theme, this is it. Director Darius Clark Monroe told me he had nothing to add to the film’s message: “everything I wanted to say is expressed in the work…” and indeed it is. The video is NSFW, due only to brief nudity, but otherwise this flick wants to stimulate you mentally much more than by parading naked men around — a lazy tactic employed by most gay films today. I hope you’ll check it out!
Tags: aids, hiv, lipo, physician, Radiesse, Sculptra
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 4 Comments »
The Dirty Little Secret of Gay Men and Meth
Monday, June 20th, 2011
How addiction to crystal methamphetamine is threatening the gay community’s long struggle to turn a corner on the AIDS epidemic.
I really shouldn’t be trusted. That’s the problem with drug addicts like me. We’ve protected our addiction through a myriad of lies and manipulations for so long that being truly honest again is like learning a foreign language from scratch. So when, at long last, my recovery has convinced me that honesty is the only thing that can save my life, I shouldn’t be surprised that my friends are reluctant to believe me.
Their skepticism is well founded. My drug addiction perverted every value I hold dear, and truthfulness was the first to be abandoned. But becoming a habitual liar was only the beginning. As a gay man I worked tirelessly through the 1980’s directing AIDS agencies and advocating HIV education. Despair was a daily companion, and I witnessed the death of friends in manners too gruesome to be described. When I became HIV positive during those early years, every loss of a friend, every visit to intensive care, was like watching my own morbid future.
But once my addiction to crystal methamphetamine took hold by the late 1990’s, caring for my community or even myself had become unaffordable luxuries. The drug, a common presence on the dance floors I once enjoyed, had tightened its hold on me. I was no longer satisfied with occasional weekend use and pursued meth with a vigor unmatched by my devotion to AIDS causes.
This onetime HIV educator became a selfish addict who engaged in perilous drug deals and even riskier sex. The sad irony escaped me, however, as I continued down my destructive path, even contracting Hepatitis C through needles and enduring chemotherapy to treat it. All the while, my addiction raged on.
My experience isn’t unique and widespread meth abuse has been brewing in other populations for some time. But something about its peculiar grip on gay men feels all too familiar, like a dreadful echo of what we suffered a generation ago. And the implications have me worried.
Most of my peers remember what it was like in the early 1980’s, when friends stopped calling or simply died over the weekend. The nightclubs were cloaked in sadness and had a vaguely sinister vibe. Empty desks at work meant someone was mysteriously sick again. During those years of “gay cancer,†we were too petrified to acknowledge the coming storm.
Today those ominous signs have returned, along with the helpless wish that things will improve if only we don’t speak too loudly about it. But rather than AIDS picking off my friends with random cruelty, meth addiction is the culprit. And this time, it is unlikely our community emergency will have ribbons and walk-a-thons or attract research dollars. Society’s sympathy for men dying from drugs is quantitatively less than dying of a sexually transmitted disease. This really is a plague of our own design.
Recovery centers are teeming with gay men battling meth addiction, and the drug has a very tight, culturally specific hold on them. It has surpassed other illegal substances as the drug of choice among gay users. There is something about the drug’s mystique as a sexual liberator that appeals to men who are so often judged by their sexuality. Just as I once did, countless men are abandoning their relationships, their careers and their personal dignity in pursuit of the insidious thrill the drug promises and never delivers.
And meth appears to be mocking my community’s long struggle to turn a corner on the AIDS epidemic. HIV testing sites claim that meth users are five times more likely to test positive for the virus than non-users.
How to combat the growing threat has this activist at a loss. Gay men know we had compelling prevention campaigns for HIV in the early days. They were called funerals. But changing an addict’s behavior is a much more ambitious challenge than changing basic sexual practices.
It was my goal to bring attention to this crisis when I agreed to appear in a recent documentary about gay men and methamphetamine (Todd Ahlberg’s startling “Methâ€). In the film, I represent the voice of reason, the recovering addict remarking on what a sad scourge the drug has become. Only after the documentary was produced did I admit to anyone that I had relapsed prior to filming and had stopped using meth only hours before the camera crew arrived. Once again, my actions trumped my ideals.
It has been baffling to find myself literally saying one thing and doing another. The facts don’t lie: I have been working towards recovery for five years and my last relapse was only four months ago. The eight years I spend addicted to meth will leave scars. Thank God for the recovering addicts I have met along the way, who have shown me that long term success is possible if I will just “get honest†and hold myself accountable. My personal survival is the job at hand.
That’s tough for a former community leader to accept. I want to sound the alarm, organize a response, and join the growing chorus of gay men shedding light on our shameful secret. But how can I urge others to practice honesty when it has eluded me again and again? And what did the AIDS crisis teach me, what did the promises to honor the lives of so many dead friends mean, when I rewarded my miraculous survival by sticking needles in my arm?
I better sit this one out. The preciousness of life itself, and my own in particular, is a lesson I should have learned while caring for my friends dying of AIDS. It has taken a battle with an equally cunning adversary for that lesson to finally sink in.
(This piece appeared on Newsweek.com on November 28, 2007. My struggle with crystal methamphetamine continued, until finally getting clean and sober in recovery on January 1, 2009. — Mark)
Tags: culture, gay, meth, physician, recovery, Sexuality
Posted in Books and Writings, Gay Life, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 3 Comments »
The Hard Facts on Erectile Dysfunction: Pills, Pumps and Prosthetics
Wednesday, April 6th, 2011
I suppose it was only a matter of time before HIV fitness guru and hottie Nelson Vergel and I ended up in bed together. After rummaging through my kitchen in a video blog about healthy eating, and then flexing his biceps at the gym when he instructed me on weight training, it really was more than he could bear. The man is only human, after all.
Alas, our queen-sized romp which opens this video was clothed, comical, and quite chaste. But it was the perfect place to start a blog about erectile dysfunction (E.D.), testosterone replacement, and how all of this affects people living with HIV/AIDS.
You’re about to get a big education on erections. Well, on the lack thereof, to be precise. The content isn’t porn but it is very adult. If your workplace wasn’t a great place to watch my recent video tour of a poz sex club, then you’ll probably want to catch this one at home, too. Just don’t miss this impotent information. Sorry. Couldn’t resist.
Besides writing his new book, Testosterone: A Man’s Guide, Nelson has gathered an impressive amount of information on what causes E.D., what the treatment options are, and what issues become a factor when you throw HIV into the mix. (I did some research of my own, but all I found was a hilarious candid camera video about an “erection spray†that has immediate, sizable results.)
Every treatment and factoid on E.D. is here: pills, pumps and prosthetics (oh my!). Mostly, though, just hearing Nelson repeatedly say “erectile†in his adorable Venezuelan accent is worth the ten minutes it takes to watch this.
Nelson mentions some great resources and here are some links. His book is available on Amazon, his non-profit is known as PowerUSA and has a web site of its own, and he offers resources on identifying a doctor familiar with testosterone replacement on his web page devoted to the topic.
Nelson is also available to answer your questions on TheBody.com, where he serves as their fitness and nutrition guru in the “Ask the Experts” forum.
As always, thanks for visiting. It will be interesting to see how many of you “share†this link. Will it be more, because it’s a sexy topic, or less, because it’s also an uncomfortable one? We’ll see!
Please be well,
Mark
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I can’t keep the internet’s best-kept secret any longer. I love The Subversive Librarian, a blog of random thoughts from a witty, thoughtful lesbian about everything from getting her car stolen and mindlessly looking for it and if it was simply misplaced (”Often the last five minutes before I leave for work are spent pacing from room to room and back again, trying to find my keys. Maybe the car is in my other coat.“) to raising her teenage daughter. Yeah, she’s a friend. Thank God, or I would deeply resent her gifts for writing with such breezy grace.
According to Dan Savage, I can now call myself a best-selling author. It Gets Better landed on the New York Times best seller list at #15 last week! My brother and I are contributors, since our YouTube video transcript is in the book (and so is our picture — there we are, right next to Ellen Degeneres, in a photo montage in the inside cover). I reviewed the book two weeks ago and remain convinced it is the most important book of the year.
Tags: Aging, aids, gay, hiv, physical, physician, Sexuality
Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 4 Comments »
A Very Special One-Year Anniversary Posting!
Tuesday, March 8th, 2011
When Mark first started My Fabulous Disease, I was pretty sure it was going to directly result in the destruction of humanity. One year later, we’re all still here.
I can’t believe I lost that bet.
Myles Helfand, Editor, The Body, The Complete HIV/AIDS Resource
My father always said, “Raise your hand. Ask the stupid questions. Don’t be afraid to make a fool of yourself.†If he isn’t rolling in his grave today, he’s certainly shifting a little, because if there’s one thing I’ve tried to do with my blog it has been to ask basic questions of others — and reveal everything I can of myself. The result has been a really gratifying experience sharing my life as an HIV positive gay man in recovery from addiction.
One year ago, I launched “My Fabulous Disease,†but the site was birthed and nurtured by the talented staff of TheBody.com. I have been contributing to TheBody for more than a decade as a writer, and producing videos for the last several years. For that I am indebted to Bonnie Goldman, the founding editor of The Body, and to the current Community Manager, Olivia Ford.
In this special video episode, I have some fun answering the most frequently asked questions about my videos — and what it has been like exposing myself, figuratively speaking, to all of cyberspace. The bottom line: it has been an honor to reveal, report, and ruminate on life’s challenges and joys as an HIV positive man.
I realize I’m not exactly an expert in the science of HIV or even a lot of the psycho/social issues involved. What I am, though, is curious. So I’ve tried to trust my own instincts and “ask the stupid questions†my Dad was talking about. Whether it was meeting teens at the AIDS conference in Vienna, exercising with fitness expert Nelson Vergel, or interviewing activists at the recent ADAP summit, I let my curiosity guide me.
Sure, I’ve bombed a few times with my videos. It’s been a learning process, and sometimes I misjudged a topic somehow, or just plain create a boring episode. Trust me – or ask anyone at TheBody, because they know how I worry – I keep close tabs on the comments and on the number of hits. And I’m constantly second guessing my choices. As much as I want to trust my instincts alone, I can’t help but want to be popular.
The episodes that mean the most to me have been the ones which were the most personal and didn’t even focus on my HIV (like “Facing Change,†about leaving Atlanta to renew a relationship, or “Taking Care of Hal,†about caring for my dying brother), or the ones that were the most practical and instructive (like “A Facial Wasting Update†about my facial filler process, or helping people select the best physician in “Six Tips for Choosing Your HIV Doctorâ€).
Along the way I have had the honor to meet people working as activists and elected officials and advocates around the world. How can I not be grateful and happy when I meet such smart and dedicated people? I know our HIV/AIDS crisis isn’t rosy and I know people are suffering. I also know without a doubt that we are in committed, loving hands the world over.
Let me leave you with this: we all have a story to tell. It is the story of how HIV/AIDS has affected our lives. Please, my friend, please tell it. Write an article or speak out on World AIDS Day. If you’re more private, maybe you could just explain to a nephew what it was like when you once lost a friend to AIDS. Maybe it is as simple as asking your friends if they have been tested lately, and why it means something important to you.
There are so many people who write me, and they thank me for giving their experience a voice, because they can not speak out. If you are blessed with the opportunity and ability to share your experience, then please join me. There is so much room, so much loving space in this world, for your voice and your story.
You don’t even have to dress in drag when you tell it. It just helps.
Please be well,
Mark
“A year of My Fabulous Disease isn’t nearly enough. You’ve had the courage to address publicly, with your words and videos, the stuff a lot of gay men and people with HIV are accustomed to only thinking about.”
Sean Strub, Founder, POZ Magazine
Your blog provides a limpid stream of good advice and optimism for anyone who stumbles into it. Your take on living with HIV is clearly the only one worth having, because you manage to inspire and annoy exactly the right people.
Gus Cairns, Editor, HIV Treatment Update
Here’s to many more years of Mark’s disarmingly honest, charmingly sincere, frequently bittersweet, and, above all, community empowering video blog.
Edwin J Bernard, journalist and blogger
Happy Birthday to My Fabulous Disease! You’re just what the doctor ordered.
Robert Breining, Founder, POZIAM Social Network
I feel as if My Fabulous Disease is a sister site to “my glamorous HIV” way of life. More importantly, you’ve been able to create much needed dialogue within the community, and provide information with substance. We love you up here in Canada.
Brian Finch, Founder, PositiveLite
Laughter and lightness of heart have made a comeback in my life, thanks to your nutty taste. I have been reminded often that although our common condition is life (and death), it is no longer life OR death.
Rod Rushing, “On The Ten†Treatment Education Network
If Albert Schweitzer and Joan Rivers had a son, it would be you! Healing and outrageous all at once. Keep “curing” us with “My Fabulous Disease.”
Chris Glaser, author, “The Final Deadline: What Death Has Taught Me about Life”
You and your blog are such an inspiration to others whether they are infected with HIV or someone who is still negative. We are also proud to have you as one of our Dab the AIDS Bear’s Ambassadors of Hope!
Dab Garner, Founder, Dab the AIDS Bear Project
Happy Birthday! You are doing such a great job at portraying the face, humor and humanity behind a terrible disease that will continue to proliferate in our community if people like you don’t continue to remind the rest of us that it still exists.
Zack Rosen, Editor, The New Gay
Tags: Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, Radiesse, recovery, Recreation, research, serosorting, Sexuality, testing
Posted in Anita Mann and Acting Gigs, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 14 Comments »
My Fabulous Disease: The Top Ten Postings of Year One
Tuesday, February 22nd, 2011
“The suspense is terrible. I hope it will last.”
– Oscar Wilde, The Importance of Being Ernest
How was this judged, exactly? I was afraid you might ask. Not on the number of hits or any formal voting procedure. I relied purely on feedback received through the year and from posted comments, but mostly, umm, I picked my favorites. So there.
presented in reverse order
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#10. The Wisdom of Youth at AIDS2010. My skills (and physical stamina) were sorely tested when TheBody.com sent me to Vienna for the 2010 International AIDS Conference. Every day was a sprint around the massive conference center in search of stories that inspired or amused me. In this episode, I was blown away by a collection of teenage (!) activists from around the globe who gave a press conference and then chatted with me (try being nineteen and an HIV advocate in Afghanistan). Then I interviewed an actual muppet with No Strings, a program that uses puppetry to communicate with African children about AIDS, transmission, and grief. Awesome.
#9. The Real Poz Guys of Atlanta. Nothing has been more important to my long term sanity and well-being than the support of friends, so I decided to let you meet a few of them in this ongoing series of videos. In this, our second get together, my friends Craig, James, Antron and Eric and I (all of us are living with HIV) bake brownies — recipe included in the post! — and dish about our HIV, doctors, families and love lives. To top it off we all engage in some surprisingly moving “show ‘n tell,” by bringing things to our dinner that represent something about life with HIV. If you need to feel the love of friends right now, check this out.
#8. Locker 32, your room is ready… to be hosed and sanitized. Okay, so here’s my bawdy comedy side, in a farewell essay to the gay baths. In my former, youthful and/or drug fueled days, I was a staple in such establishments, and the value of how one looked sauntering about in a towel was a misguided priority that, frankly, I’m still working to shake from my world view. But there’s no such depth in this funny essay, just a final look at the baths on my very last visit, or as the piece begins, “the last time I went to the baths… I stepped in poop.” Hold your nose, and enjoy!
#7. The Price is Right, thirty years after coming on down. “When I was 19 years old, I vacationed to Los Angeles and won a car on The Price is Right.” So begins my book “A Place Like This,” my first-person account of my years in Hollywood in the 1980’s. I use the game show story to reflect on the young man I was and what dreams I had, while AIDS looms in the near distance ready to wreck the plans of a generation. I’ve always liked this as its own essay, though, and thought it would be fun to include the actual footage of my winning the car, so the reader can watch the little story come to life.
#6. My T-cells Could Use a Facelift. I’ve probably posted the heart and soul right out of this poor video, using it more than once this year, but it remains a favorite of mine because it strikes the heart of my issues as a gay man, a man with HIV, and an aging one at that. We’re the guys that can still remember being youthful but we just don’t quite hack it in the cruise clubs anymore. I know I shouldn’t miss it, and yet… The video also lets me show off my butt pads and discuss my not-so-subtle tactics to avoid growing up. Maturity is hard won in my household, my friends.
#5. A Facial Wasting Update. This is when I realized the real potential of my little digital camera: when Dr. Gerald Pierone agreed to let me film our consultation about my facial wasting (lipoatrophy), and the procedure to remedy it. This episode is actually our second video together, when I returned for a follow-up treatment — it reviews footage from the first visit but also gives a more accurate look at the treatment results. At the end of the first episode, I was so pleased with my new face that I shot my closing with such bright light I looked like I was voguing in a Madonna video. I don’t make that mistake again.
#4. I am the man my father built. Why are there passages in our life that we return to, again and again, those milestones that shape us and serve as references points our entire lives? Camping in the woods would seem an unmemorable scenario for a young gay boy like me (behold my pubescent self, right, in repose). Dad wasn’t trying to butch me up, he simply reveled in being different, like pitching a clear plastic tent when all the other fathers and sons on the campout had normal ones. But every time dad instilled in me the value of being different (”that’s the beauty of it,” was his most common exclamation), he was preparing his son for the world in a way he never imagined. A love letter to my dad, and I hope you’ll read it.
#3. Examining death, including the one I caused. To be honest, I thought I was doing my ex-partner Chris Glaser a favor by reviewing his most recent book. But that blithe arrogance evaporated when I read his elegant book about death, “The Final Deadline.” Chris devotes chapters to manners of death and their lessons for the living, and to my surprise includes one about the death of our relationship and there, suddenly and in black and white, was the wreckage of a romance, and the crushing hurt I had caused when I chose my escalating drug addiction over my partner. Reading this book would enlighten anyone, but no one more than me. Chris’ capacity for forgiveness and finding teachable moments is more beautifully rendered in his book than anything I might conjure.
#2. Once, When We Were Heroes. Another one I’ve posted to death — the video version has been on my main page for ages — but it’s as if I’m afraid I’ll never write something quite like it again. It sprang from my observations about so many of us that lived through the horror of the 1980’s and how mundane our lives are today. So many of us were called upon to do courageous things, or withstand terrible grief, and today we’re shopping at Macy’s and planning brunch. Which is a miracle and perfectly allowed, of course. It just makes me realize that you can never know what the man on the treadmill at the gym might have once withstood, or how resilient our own spirits are, when we once thought they might never survive.
#1. The Day Larry Kramer Dissed Me. Pure whimsy, no doubt about it, and the funniest part of this fictional account of a disastrous trip to the mall with Larry Kramer was how many people didn’t know I made the damn thing up. Not until they read the footnote. Reactions were all over the place: how dare I ridicule an icon, they wanted to know. I would be dead if it were not for him, they wailed. And “this is hilarious, please do HRC next!” I have not had the honor of meeting Larry Kramer but idolize him as an activist and as a writer. And if my “six degrees of Larry Kramer” friends are telling the truth, the man himself got the joke and liked it (and even left a posted comment for all to see).
Honorable mentions: My provocative chat with activist and POZ Magazine founder Sean Strub, “Five Things About HIV They’re Not Telling You,” had prevention advocates either impressed or aghast, and that’s a good thing. My favorite little video was the Gay Pride PSA That Will Never Air, which begins with funny stories before it punches you in the gut with a message about drug addiction. And speaking of addiction, there’s a precious vision of recovery is in the simple essay “A Dance to an Atlanta Night,” in which I enjoy some simple pleasures with friends who have seen me at my worst.
I feel like I’m hitting my stride. Thanks to all of you for your words of encouragement, and I mean that. This has been an awesome adventure because of you. As always, please be well.
Mark
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I hope you will consider “sharing” this via the buttons below with anyone who might enjoy an introduction to the blog. I love reaching new readers. Thanks.
Tags: A Place Like This, acting, Aging, aids, barebacking, culture, drag, family, gay, help others, hiv, lipo, meth, physician, politics, recovery, Recreation, serosorting, Sexuality
Posted in All Other Video Postings, Books and Writings, Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 2 Comments »