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Mark and Vinny Holiday Letter 2007Email this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
In 2008, we will celebrate 15 years together. Our annual Holiday Cards embrace diversity with a multi-cultural/multi-faith inclusive, secular and atheist-friendly message. You can see past cards on our website. Up until a few years ago, we also wished “Remarkable Ramadan” but because of a quirk of the Islamic calendar, Ramadan migrates through the seasons (this year it was Sept. 13 to Oct 12), so this year’s omission is one of timing, not because we aren’t inclusive of Islamic faith. In many ways Vinny is more active and happy than he’s been in years. He’s still living with AIDS and end-stage liver disease fro...
Source: Mark's HIV Blog - December 25, 2007 Category: HIV AIDS Source Type: blogs

Health and SickoEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
First of all, I’m overwhelmed by the positive feedback, e-mails and cards I’ve gotten from my audience (both live and on the internet) for my the Pride speech that I gave this last weekend. If you’ve come looking to read that speech, you can either scroll down to the next blog entry or follow this URL. Today I give myself Pegasys shot number 25, so I’ve just past the half-way point in my 48-week Pegasys/Ribavirin treatment. Both my 12-week and 24-week hepatitis C viral load was has been undetectable, which means that the treatment is an unqualified, total success. That’s a wonderful but rare outcome for folks li...
Source: Mark's HIV Blog - June 28, 2007 Category: HIV AIDS Source Type: blogs

Pride, Diversity and AssimilationEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
[Here is the text of Mark’s remarks for Pride 2007] About once a year as I’m hurrying along on the sidewalk in mid-town Manhattan, someone comes up to me on the street and asks if I’m Jewish. Well, my father was a British Atheist and in the 1930s a Communist from a rather well known Jewish family – that’s the “de Solla Price” part of my name. My mother was a Danish Atheist and Communist from the same era who was Christened in the Lutheran Church, but had almost no other church attendance since. For my parents religion, like nationalism, was something that separated people into groups of “us” and “the...
Source: Mark's HIV Blog - June 24, 2007 Category: HIV AIDS Source Type: blogs

Mark & Vinny 14 Year AnniversaryEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
This past weekend marked the fourteenth anniversary of the day in 1993 when Vinny and I met and were randomly assigned to work together at a Marianne Williamson HIV support group in New York City. And those 14 years together were lived with AIDS, so there should be a multiplier, like there is for dog years. Although we've both had to face so many life-and-death obstacles which at the time really sucked, being told that we really don't have too much more time alive together has made us seize the day and take that extra effort to makes those moments special. And all those quality moments add up to lots of happy years of liv...
Source: Mark's HIV Blog - June 19, 2007 Category: HIV AIDS Source Type: blogs

Six-Month Anniversary on DisabilityEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
I love the Memorial Day holiday here in the US. It is the unofficial beginning of the summer, especially in New York City. The bulky Winter clothes are replaced with skimpy Summer fashions and everyone seems to plan frequent escapes to the beach, mountains or "their country place." This week is also the six-month anniversary of my having to stop working at POZ Magazine and having to go out on disability. As those of you have been reading along, you’ll know from my description of my experience with Pegasys/Ribavirin treatment, it’s been pretty brutal for me. I take my shots on Tuesday night, and then spend about 70% o...
Source: Mark's HIV Blog - May 31, 2007 Category: HIV AIDS Source Type: blogs

Pegasys/Ribavirin Week 12 and my Upcoming PhysicalEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
On Tuesday I'll start Pegasys/Ribavirin Week 12 and once the bad days pass, then I go in for a full physical (on April 2) to evaluate both how successful the treatment is likely to be (since it's so hard to take, it's not worth it, if it's not doing anything) and also we'll see how my body is holding up to this rough treatment. I know I've lost 35 pounds so far and a lot of stamina. Reuters broadcast the following item (which was also carried by AIDSmeds.com), and addresses exactly my treatment and the importance of this treatment milestone. Early HCV Response Predicts Outcome March 15, 2007 (Reuters Health) Early vi...
Source: Mark's HIV Blog - March 24, 2007 Category: HIV AIDS Source Type: blogs

No Pain, No Gain?Email this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Now that I'm working to prevent the weekly hives, it seems that it's taking me day longer to bounce back. Pegasys injection of Tuesday evening. Wednesday, Thursday and Friday a total write-off and Saturday mid-day I start to bounce back. I'm really having a rough time eating most days. It's not much fun. On the positive side, when I complained to a well-informed friend, this person said "folks on Pegasys who have an easy time are the ones for whom the treatment isn't working." I have no idea if it's really true -- part of me doesn't even want to research it, because it is such a powerful reinforcement if true -- and I re...
Source: Mark's HIV Blog - February 25, 2007 Category: HIV AIDS Source Type: blogs

Savoring Those Good DaysEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
One of the good parts of having so few good days, is that it makes each one special. Last week on my one good day, my nephew Tom Demichele came into New York for a day of fun. This week, I went to a Mardi Gras Party and then my sister Linda Demichele (Tom's mother) came in a we celebrated her 57th birthday -- actually, she did more for us that we did for her. She even scrubbed down the bathroom (again), did some household repairs, and even paid the ConEd bill (again!). But Vinny and I had the birthday party hats for her and lots of love. Being a couple with both folks on disability isn't great for either the money or th...
Source: Mark's HIV Blog - February 21, 2007 Category: HIV AIDS Source Type: blogs

Werewolf EnvyEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Ever wonder how Werewolves have to schedule their lives? Werewolves have a really bad day or two every 28-days where they have to clear their schedule. But it’s predictable, so I guess you can learn to live with it. You certainly don't want to get your days mixed up and end up at a wedding or something on a bad day. In my world of Pegasys treatments is measured by the weekly injections, not monthly full moons. I do the injections every Tuesday evening, so every Wednesday and Thursday, I’m pretty miserable. My whole body just aches. I’m pretty much bed-ridden and out of it. I don’t even check e-mail, read, or watc...
Source: Mark's HIV Blog - February 13, 2007 Category: HIV AIDS Source Type: blogs

I Have Health Insurance AgainEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Thanks to the herculean efforts of Dennis Daniel, the POZ human resources person and Wendy Frank, the insurance agent and Jeanine Muzzi battling the bureaucracy of Oxford Health Insurance, I once again have both health insurance and prescription coverage! I was actually able to swing by Village Apothecary and pickup my outstanding prescriptions. There was no gap in coverage, so all the things that got rejected in the last week should be able to be resubmitted and just work. It will be a clerical mess, but I can deal with that. Boy that feels better!
Source: Mark's HIV Blog - January 22, 2007 Category: HIV AIDS Source Type: blogs

Bitten by a COBRA: a week without health insuranceEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
When I try to explain the draconian machinations of the US health insurance system to my friends and family in Europe, they just can’t understand why we allow it. In Denmark, where my mother was born, and were my cousins still live, there is universal practically free health care. Hospitals, tests, doctor’s appointments, prescriptions – everything is almost completely covered for EVERYONE. In fact, health insurance is illegal in Denmark. Of course, the Danish people are willing to make trade-offs that we Americans will not. They think it’s reasonable to share the total health care budget with the whole populatio...
Source: Mark's HIV Blog - January 20, 2007 Category: HIV AIDS Source Type: blogs

Pegasys + Ribavirin Week OneEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
It's now Friday and I had my first Pegasys shot and first round of ribavirin capsules on Tuesday evening. The Pegasys shot is once a week, the ribavirin capsules are 3 capsules, twice each day with food. Tuesday night and Wednesday morning I felt dizzy, disoriented and sweaty, but hell, in the old days I had to pay good money for cocktails or recreational drugs to feel this way. I'm still sleeping 14 hours each day, which kind of sucks, but that is one of the main reasons we've opted for treating my hepatitis C aggressively. On Wednesday and Thursday, about half the time I felt fine, and half the time I ached all over. ...
Source: Mark's HIV Blog - January 12, 2007 Category: HIV AIDS Source Type: blogs

Pegasys+Ribavirin Treatment Begins!Email this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
After a little over a month delay to deal with my polycythemia and a week more to wrestle with the insurance company, this morning a styrofoam cooler arrived by overnight messenger from the specialty pharmacy with four pre-filled syringes of Pegasys (refrigerated) and two bottles of Ribavirin capsules and assorted other goodies. This afternoon, I had a previously scheduled appointment with Paul Chambliss, my main doctor, and I had lots to review with him covering the four other doctors I've seen in the last month. As usual, I had a whole check list of things to go over together. My HDL (good cholesterol) is a little lo...
Source: Mark's HIV Blog - January 10, 2007 Category: HIV AIDS Source Type: blogs

Parties, Pictures & PolycythemiaEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Like about half of all New Yorkers right now, I’ve had a rotten cold for the last week. This, on top of my hepatitis C fatigue, means that I’m sleeping 80% of the time (yes, really). Today is the first day I’m feeling like my “disability normal” self again -- meaning that I’m only sleeping 60% of the time. I said this posting was going to focus on social news, but before I do, let me give a medical update. If you can't wait, just scroll down to the horizontal line below. I apologize that this is such a long blog entry; I wrote it in parts and was going to put it together and post them when I felt up for it. ...
Source: Mark's HIV Blog - January 8, 2007 Category: HIV AIDS Source Type: blogs

Polycythemia and Terrorist DetectorsEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Well, it’s been about a month since my last blog entry. "Weren't you the one who said bloggers should blog weekly?" Guilty as charged. In this entry, I'll catch up on medical stuff… On Thanksgiving, I started my medical leave from POZ to focus on my various health issues. Before I could start my yearlong treatment for hepatitis C (Roche's Pegasys with ribavirin, now scheduled to start in the first week of January), I had to get my polycythemia under control -- and this turned out to be a much more serious deal than I had thought. As I’ve written before, polycythemia is a blood condition that is the opposite of anem...
Source: Mark's HIV Blog - December 18, 2006 Category: HIV AIDS Source Type: blogs

Mark and Vinny’s Holiday Card and LetterEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
This has been an eventful year: In January, I finally gave in to Vinny’s many months of asking, and we welcomed Troika into our home. She’s a Doberman-mix rescued from Texas after hurricanes Katrina and Rita. In February, Vinny slipped and fell during the season’s only blizzard and shattered his shoulder. Miraculously, after tons of physical therapy it’s about 85% healed. At the end of March, Vinny was kicked out of hospice care (after four years) for not dying “within weeks” as expected. We miss the 54 hours of home care each week, but we’re thrilled to report that Vinny’s health has continued to improve....
Source: Mark's HIV Blog - November 27, 2006 Category: HIV AIDS Source Type: blogs

One Month, Lot of Doctors and More DiagnosesEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Well, Thursday November 9 was my one-month anniversary knowing that I’ve got hepatitis C. I had really wanted to write up a blog posting, but I was just so beat from working and doctor’s appointments, so I put it off until after my post-workday nap, but I slept through until Friday morning. I vowed to blog over the weekend, but I spent that sleeping too, so now it’s Monday. Well, that’s pretty much the way my life is these days. I started last week with an appointment with Les Seecoomar (my liver specialist), who had just gotten my liver biopsy results. Yup, it’s hep C and it’s a relatively recent infection (w...
Source: Mark's HIV Blog - November 13, 2006 Category: HIV AIDS Source Type: blogs

A Hep Cat Halloween at POZEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Tuesday, October 31, 2006 (Halloween) Back on September 25, Shawn Decker and Gwenn Barringer stopped off on Shawn's My Pet Virus book tour at my local Barnes & Noble. Being long-time fans, Vinny and I were in the front row. Shawn coined the term Positoid for HIV-positive folks and thin blood for hemophiliacs. I asked him "What's more of an issue day-to-day for him, being a Positoid, thin blood, or (I was thinking on my feet...) being a hep cat?" He said being a Positoid was more difficult because of all the meds and side-effects. I've always enjoied any excuse for a good party. My parents were the same way. I've been H...
Source: Mark's HIV Blog - October 31, 2006 Category: HIV AIDS Source Type: blogs

Walking The Same Hospital Corridors For My First TimeEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Thursday, October 19, 2006 My alarm is set to 5:45 AM – a good hour and a half before sunrise. Today I have my liver biopsy at Roosevelt St. Luke's Hospital in midtown New York. Vinny's had literally dozens of procedures there, but today is my first time walking down those same corridors. It's both so familiar and strange at the same time. I was 15 minutes early for my 7 AM check-in. I am so not a morning person, so it's just as well to get this over with before my mind kicks in. I was ready with all the paperwork ready. By 8 AM, I was in the smallest operating room I had ever seen. Four people were scrubbing in. In ...
Source: Mark's HIV Blog - October 23, 2006 Category: HIV AIDS Source Type: blogs

A Life Worth Dying ForEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
I grew up a devout Atheist, and went through phases of being Jewish, Pagan and Quaker. Now I’m a Unitarian Universalist Humanist and member of The Community Church of New York Unitarian Universalist and The Unitarian Universalist Meeting House of Provincetown. Both groups have been particularly active in promoting equal rights for same-sex married couples. I think of the Sunday service like an ACT-UP meeting but with really great music. I don't think of myself as religious as much as socially/politically/ethically active. Although the Unitarian Universalist movement branched off from liberal Christianity, a recent stud...
Source: Mark's HIV Blog - October 17, 2006 Category: HIV AIDS Source Type: blogs

A truly gorgeous Ken doll with blue-black hairEmail this article to a colleague. Save this article to My Clippings. Discuss or comment on this article.
Thursday, October 12, 2006 As I've written earlier, Vinny and I have been working with a great liver specialist, Leslie Seecoomar. He is young and smart and over the years we've developed quite a good rapport, so now that it's my turn to see a liver specialist, we made an appointment to see Les. We went to his new offices at Columbus Circle and he greeted us warmly. He joked with us that whenever he goes to medical conferences or family reunions or whatever and folks Google him, the first few pages are various places quoting Vinny calling him "A truly gorgeous Ken doll with blue-black hair.” Vinny (and I) are guilty ...
Source: Mark's HIV Blog - October 12, 2006 Category: HIV AIDS Source Type: blogs