How We Have Progressed

This blog entry is very lengthy, but I kindly ask ALL of my Facebook friends to PLEASE READ.
Many of you may remember Pedro Zamora. Pedro was on the third season of “The Real World.” He contracted HIV which, back in the early 90’s was a death sentence. His courage was inspirational. Pedro died of AIDS in 1994 but he educated us all. Please take a few minutes to watch this video.

James McClarty-Lopes has been living with HIV for over 10 years. He is a chef and an athlete. I can’t embed his video, but please take a look. His attitude and the fact that he is living a very full, healthy life is an inspiration.

At the 2011 Out & Equal Workplace Summit, I met two gentlemen who are HIV positive. One has been living with it for 27 years and the other for 25. They are healthy and living good lives.

Today HIV is not a death sentence. It doesn’t mean you are doomed to get AIDS. It is considered a treatable, chronic disease that is no different than if you were diagnosed with diabetes. We have progressed far. This doesn’t mean we need to be complacent.

  • There still is no cure for HIV, those infected will have it for the rest of their life.  Remind your friends and family of this fact.
  • We must continue to raise awareness like we once did.
  • Tell your friends, whether they be straight, gay or bi to always be safe.
  • Cross-post this blog entry on Facebook and Twitter. Have them watch the videos.

For many years I had psoriasis and in late May 2011, I finally made an appointment with the dermatologist, but because of being short staffed, they couldn’t take me until August 10th. I will get back to this in a little bit. In early June 2011 I got what I thought was a very bad gum infection to the point where I had all the symptoms of the flu. For those who know me, I almost never get sick. My school mates might recall that I rarely was absent. On June 6, the day after I walked in the Asbury Park pride parade, I was rushed to the hospital with a 103 degree fever. I was so sick, I had to be in a wheelchair. St. Peters did a great job and got my fever down a few hours later, but I was sick for weeks. Once I recovered, I developed Bell’s Palsy. Having the right side of your face paralyzed was very frightening. It was like I had a stroke. Eating was physically exhausting for me and whatever I ate, I could not taste. I also had diarrhea and almost no energy. I often went home sick or simply too tired to keep working. The Bell’s subsided after eleven days and I made a full recovery. The diarrhea continued and I started to have a lot of pain, as if I had a hemorrhoid.

On August 1st I was going to Las Vegas with my friends and I wasn’t going to let anything stop me from going. I can live with the diarrhea and pain, but I still didn’t have a normal energy level. A few days before my trip, I noticed that my skin was getting these little dots on it and the big patch of psoriasis on my right calf went almost around my whole leg. I was concerned about what they were, but since I was going to the dermatologist in a few days, it wasn’t a big deal. The trip was fun, despite the pain and low energy levels. I saw the dermatologist and they said that the breakout all over my body was psoriasis. The treatment for the kind of psoriasis is a drug called Enbrel. The problem with Enbrel is that it weakens your immune system, so I had a battery of tests done. My liver and kidney functions are fine nor do I don’t have hepatitis, herpes or syphilis. What they didn’t like was my western blot test. It came back with an inconclusive result. For those that do not know, the western blot checks for HIV. Having a “balanced” result as the doctor put it, doesn’t mean that I have HIV, just that there is some kind of antibody in my immune system. Thinking that I just had a gum infection, this makes sense. My body still had the antibodies from fighting that off. As a precaution, my dermatologist recommended that I see an infectious disease doctor to get a more comprehensive set of tests to check my immune system.

I was an emotional basket case, as my friends and co-workers can attest. For those that are my friends on Facebook, you may recall that I posted some rather cryptic Facebook status messages about tests.  I was very scared, thinking that I could die.

I went to the infectious disease doctor and he explained to me that goodness forbid that I am positive, that I won’t die and that it is a treatable disease, no worse than someone having diabetes.  It’s just simply a chronic illness.  While this made me feel better, the specter of having HIV still scared me.  I thought, what if I did have it?  With the layoffs at work, I’ll never find another job again.  No one in my right mind would insure me (I recently found out this is illegal).  How would my friends, family and co-workers react?  Would I get an “I told you so” lecture, will my parents cry?  Will my co-workers be afraid to sit near me or have a munchkin or bagel after I did?  With the way I was feeling physically, I thought, “do I not have HIV, but AIDS?”

I went for the blood test and for over a week I thought about these things.  Thanks to my wonderful best friend and others (but how Neil put up with me will forever be a mystery) , my mind was continuously put at ease.  My physical symptoms were not getting much better.  I was constantly getting up several times at night to go to the bathroom and the psoriasis continued to spread.  Finally it was the day of my appointment.  I was mentally prepared to be told that beyond a reasonable doubt that I was HIV positive.

I was right.

The doctor, like pulling off a bandage, told me that I indeed am HIV positive.  He then showed me the ten or so tests in which a vast majority said “positive.”  My heart sank.  He then proceeded to explain that it was caught early.  He went on to state that my liver and kidneys are all functioning normally.  I do not have toxoplasmosis.  I do not have any form of hepatitis, syphilis or tuberculosis.  He then stated that my viral load is quite low and my CD 4 count is high (that’s a good thing).  He said he sees no reason why my HIV cannot be completely suppressed.  He put me on a medication called Atripla, which are three medicines combined into one.  While I may work for Merck, I am thankful to the folks at Bristol-Meyers Squibb and Gilead for making this medication.  The worst side effect are a rash and scary dreams, which is why they say to take it at night.

How did my friends, co-workers and family react?  One member of the Merck Rainbow Alliance jumped back and looked at me like I was a leper before catching their self (and I wasn’t surprised by this one person’s reaction).  Other than that, my friends, co-workers and family reacted with caring and support.  No “I told you so” and my co-workers have treated me no differently than they have before.  I am also very thankful to have a very supportive boss who has allowed me the great flexibility of time to go see my various doctors.  I truly have the best boss in the world with Mike Landsman.

I have been lucky, no scary dreams, just vivid ones that makes sleeping fun.  After 2½ weeks taking Atripla, my diarrhea has gone away and thanks to a combination of another drug and lightbox treatments, my psoriasis is slowly fading and the chicken pox-like itching has become only a distant memory.  A recent follow-up visit to the doctor reaffirmed my very, very good prognosis with my illness.  He thinks that at the rate I am going, my viral load may drop to undetectable levels and that I may even be able to take the immune-whacking Enbrel.  There is no reason why I can’t live to be a very old man.

There you have it, as promised, “my big announcement.”  If you did read this almost 1,500 word blog posting, I thank you.  I want to use my experience with HIV as a lesson.  I am very open about it and please, feel free to ask me questions, whether it be on my web site or in the comments section of the Facebook cross-posting and re-post!


Big Announcement

In a week or two, keep an eye out for a very personal blog post about what I have been going through over the last few months. Some may recall that I was very worried about some tests. I’ll be explaining that in the posting.

Meanwhile I have had some interesting adventures. In August I went to Las Vegas for Defcon 19 and had a good time. My best friend Neil gave an excellent talk on cryptography and steganography. In mid October I went to Indianapolis to visit Neil and Mark. I had a wonderful time seeing the city, Neil’s new apartment, his new car and my friend and ex-coworker, Casey. Next week I’m off to Dallas for Out & Equal which should be a lot of fun.

Click on the picture to get the non-cropped version.