Poz Mailbag - 2

It's been a while since I wrote part 1 on of the mailbag and since then a lot of new questions have come into my email bag. Since the last posting, I set up a profile on one of the premier gay chat/sex/pickup "whatever you want to call it" sites. The profile plainly states that that I am not there looking for nookie since I'm not one of their tribe, but I am there to share info and to offer an ear to guys who have recently found out they are HIV positive and don't know where to turn. I also mention that I've been poz for over 20 years and that poz guys are not alone.

I was surprised that the responses have been overwhelmingly positive (no pun) and supportive of my profile being there. I've gotten a lot of "God bless you and what you're doing" and "thanks God somebody finally put a profile like yours up, thank you" from guys who not not HIV positive, but are sensitive to the crisis. Out of hundreds of emails, only 3 or 4 have been of the tone "fuck you and the diseased horse you rode in on" type.

I've also gotten emails via the Nightmare Hall blog and a couple of HIV info forums I'm a member of. As the old sayings go, "Silence Death", "Ignorance <> Bliss", and "Knowledge = Power". These are important for any chronic semi-manageable illness and not just HIV.

So here goes, some questions and answers in no given order...

(Q) A friend of mine doesn't look well. Some of us have been talking and think he has AIDS, but nobody has approached him on the issue. What do you think? What are the telltale signs?

(A) Well I'll begin by saying "does it really matter" whether he has HIV or not? Many years ago I made the same mistake in assuming someone had a condition. Many people with HIV who remain in good health show little, if any signs of being sick. If the telltale signs you mention are a gaunt look, sunken face, light missing from the eyes, many conditions can cause this; cancer, chronic alcoholism or drug use, HIV as well as other chronic conditions. I've known a lot of people who have died from cancer and toward the end, it was hard for me to tell the difference between them and someone with HIV. The human body can be ravaged by any number of medical conditions. If you are really concerned you can approach him in a sensitive manner and ask how he's doing.

(Q) I just found out I'm HIV positive yesterday. I'm honestly afraid and confused, this came as a big shock. I don't know where to turn and have not seen a doctor in years? I'm afraid to tell my partner out of fear he'll leave me.

(A) The first thing you should do is find a doctor you feel comfortable with. Also check local directories for AIDS Service Organizations, clinics and hospitals in your area that deal with HIV, support groups. Assuming you are gay, check any local gay weekly news rags for listings of HIV services.

Once you have found a doctor or clinic, get comprehensive blood work and a physical exam to see where you stand. Depending on your T cell counts, ratios and viral load results, you may or may not have to go on HIV drug therapy yet. As far as your partner is concerned you will have to discuss this him sooner rather than later. You may also want to seek the help of a therapist of you're not already seeing one.

(Q) I just found out I'm HIV positive and have a question about drug use. I drink quite a bit and use crystal regularly. I can't help it I like to party. How will this affect my health with HIV?

(A) I never used drugs and am not preaching, but what you have to decide for yourself is how much to you like partying verses living. I have read up quite a bit on crystal meth use and it's effects on the body. You probably are aware of this, but it is NOT good at all for you body or mind. Any heavy drug or alcohol use puts a heavy burden on the heart, liver, kidneys, pancreas and brain. Since these are all vital organs. Since your immune system had been compromised, you need to stay as healthy as possible and that means trying to get clean. HIV itself has been shown to do organ damage and it you have to go on an HIV drug treatment regimen, these drugs also are very hard on the body.

(Q) I've been on the HIV cocktail for years and my counts have remained very good. My doctor has hinted about starting me on a drug holiday. I don't feel very comfortable doing this, what do you think?

(A) There is a lot of controversy on this topic. The popular belief among health professionals is that it's not a good idea for a number of reasons. A lot of people have rapid deterioration of T cell counts and viral load shortly after going off all meds.

I have been off all meds now for 18 months due to side effects that sent me to the ER 10 times during 2005. My blood work prior to going off the cocktail had been consistently very good. At first I had a rapid drop in T cells and viral load shot through the roof. A month later the T cell count began rising and viral load dropping. So far my T's have remained in the high 40o to 500 range and viral load has remained just about undetectable, but I am monitored much more closely than I was on the meds.

It's a decision you and your doctor have to make together. One concerns is that the virus can mutate while off the meds and it might be more difficult for find a combination therapy that works. If you're not having really bad, debilitating side effects, I'd say stay on the meds.

(Q) I had unsafe sex with someone a few months ago and I've been sick a lot lately and never was before. I had pneumonia and keep getting rashes and a sticky white deposit in my mouth. I wonder if I should get tested for HIV. How accurate is the test? Is there any such thing as a false positive test result?

(A) Getting tested might be a very good idea from what you've told me. It may not be HIV, and I hope in your case it isn't. To answer your other question, yes there are false positive as well as false negative results, but they are rare. No test is 100% accurate all the time. When I go tested and found out I was positive in 1985, there were lots of false test results. The tests were not as accurate as the ones today, plus now there are viral load and DNA tests.

(Q) I'm not HIV positive but have friends who are. Where would be good places to learn more about medical treatments and living with HIV so I can carry on intelligent conversations on the subject.

(A) You might begin by asking your friends for articles or books on the subject, or just ask question and listen while they talk. If there is one in your area, contact the local AIDS Service Organization or support center. They might be able to give you some educational materials and may have volunteer opening available if you feel like doing some volunteer work. Believe it or not, the Internet can be a great source for a lot of information about living with HIV and it's treatment options.

(Q) I just found out I am HIV positive a few months ago and friends have told me I should go on disability. Overall I feel pretty good and enjoy working. I'm 30 years old.

(A) I always say, "if it ain't broke, don't fix it". If you feel pretty good I'd say definitely keep on working. I had to go on disability over a year ago, after working for over 30 years at work I really enjoyed. The primary reason I had to finally make the decision to apply for disability was not sue to HIV but a chronic degenerative neuro-muscular spinal condition.

You've got your entire life in front of you and I will say this, disability is not picnic, applying is a long grueling bureaucratic process, like having an extended mental root canal. It is also much harder to get on disability now than it was 20 years ago since there are a number of conditions that must be met, plus you need the approval or one or more doctors. I'd love to go back to the work I did, but honestly in no way could I currently perform to 5% of what I used to. Work is actually good for the soul.

(Q) I'm not poz but noticed you've been positive for quite a few years. Has it affected and changed your life much for better or worse?

(A) Good question, and it would take about 100 pages of text to describe the way living with HIV for so long has impacted my life. I'll be honest in saying, there are other things I would rather have a major impact on my life, but HIV has made me much more aware of my body and it's needs. I listen to it when it's tired or something is wrong. Before HIV, I used to ignore a medical problem until it became a big problem, like the minor cut that turned into a 10 day hospitalization for a systemic bacterial infection that almost killed me. It has also shown me who my real friends are, which are very few indeed. HIV has also helped me see more clearly what is really important. What I used to think was of major importance is no long worth worrying about (the stuff the media and our peers angst about). I appreciate the little, sometimes silly things in life. In many ways I stop to smell the roses more than rushing around through life, oblivious to the world around me. I no longer care to get caught up in the energy depleting games people and society play. I have become more compassionate toward society's underdogs, of which I am now one. I have become less religious and more spiritual. I'm much more easilly amused and appreciate life's simpler pleasures more. I'm far from good at it, but I try to live more a day at a time. HIV has been a cruel teacher, but a teacher no less. Your own mileage may vary.

(Q) I think you're lieing. It says that you've had HIV for over 20 years. I've never known anyone to live that long with HIV.

(A) Sorry to disappoint you but I have lived with the virus for over 20 years, verified 3 times during the Summer of 1985. I've found there are a LOT of long term survivors out there. We just don't go waving our arms around yelling "hey look at me I'm poz for 20 years" We are out there in legion, just trying to quietly live our lives.

(Q) Can you get HIV from casual physical contact. The thought of this scares me to death.

(A) You can relax, you cannot contract HIV from hugs, hand shakes, using the bathroom in a bus station, even drinking from the same glass, eating from the same plate as someone who is HIV positive (not that many people eat from the same plate). You can pick up a cold or flu from casual contact. You can also pick up a antibiotic resistant bacterial infection called MRSA, the same infection people get in hospitals, but not HIV.

(Q) I'm poz and feel like nobody will ever want to have sex with me again. Will I always be alone? I live in the SF Bay area.

(A) What's sex? only kidding. There are more important things in life beside sex. You may be surprised at how many people for whom HIV is not a major issue, they'll like/love you regardless. Since you said you live in Sodom by the Bay, I would say you are far from alone in being poz. Check out any poz social or dating groups in the area. What I have found is that you'll probably meet someone when you're not looking.

(Q) I'm not poz myself but am worried about a good friends who is. He has been isolating himself and hardly ever answers his phone when I call. He doesn't go out any more and seems to have lost interest in everything. I'm worried that he may be suicidal. What do you think?

(A) HIV can play a major factor in depression. I've gone through periods similar to those you describe in your friend. He also may not be feeling well. I know when I'm sick, being around people is the last thing on my mind. Give him some space but keep an eye on him. Try to get together with him just to talk but be gentle. Share your concerns and be a shoulder if he needs to cry.

(Q) We've been in the HIV epidemic for over 25 years now. Do you think there will ever be a cure?

(A) Not to rain anyone's parade, but NO, I doubt there will ever be a total cure for HIV. The virus mutates to fast, it's a God size task to totally eradicate it. Since we live in a capitalist society, there is way too much money being made from AIDS and illness in general. Think of the billions that will be lost if a cure is found. Sorry but that is a fact of life in a money worshipping culture, plus there is the notion that HIV affects "the other gay" who probably deserves it.

(Q) Can HIV cause depression. My doctor told me HIV itself can cause depression. I was never depressed that I knew of before I became infected, not I have periods of deep depression.

(A) I've been told HIV causes everything from baldness to insanity to your car not starting in the morning and your computer crashing regularly. Way back when...I just thought it affected lymphocites, but as new research data comes in, it seems HIV leaves no stone unturned or no gene unmolested. Yes HIV can affect the brain, but just living with it and dealing with the societal stigma and medical dogma is enough to induce depression.

(Q) I'm NOT HIV positive (a lot seem to preface their question with this) and was just curious, are you worried about or do you think about dieing a lot?

(A) I hadn't given taking the long dirt nap much thought until you asked your question, only kidding! Yes the thought and fear of death has arisen in my mind off and on over the past 2 decades, but I try not to dwell on it. Fact is we all die, and to paraphrase Woody Allen, "it's not dieing that bothers me, it's getting there." Since I've been living with the virus now for going on 22 years and am pushing 60, I think about death more. I'm almost legally now a senior citizen, so death shadows me more closely than it does a 20 year old.

(Q) From your profile pictures you look very healthy. Do you attribute it to a healthy diet and working out?

(A) I used to work out regularly, plus long distance cycling and swimming, but have not been able to now for years now. I always tried to eat a healthy diet, but after finding out I was poz, cut out almost all fast food. I try to eat a lot of fresh fruit and veggies, whole grain breads, plus have cut way back on the amount of red meat I eat. I do still enjoy dead animals on my plate, but am much more aware of the quality of meat, that it's fresh and properly cooked. I used to love beef cooked rare, but in the world of living with HIV makes sure it's cooked more thoroughly (still like a bit of pink in it). Raw/rare meat can make anyone, but especially people with HIV sick.

The old saying "you are what you eat" holds pretty true. Living on the Eric Cartmen diet of cheesy poofs, snacky cakes and beefy logs does not promote good health. I prefer to remain slim and be able to wear the same clothes I did in college, plus obesity contributes to diabetes, high cholesterol and heart problems. But yeah, good nutrition is even more important to HIV'ers, plus take a very good vitamin supplement.

(Q) Are AIDS and HIV the same disease?

(A) I get this question a lot, and yes both conditions are related to the same virus, it's a matter of which stage a person is in. When someone is asymptomatic and in fairly good health, they are HIV positive regardless of how healthy they are. When someone's T4 cell count falls below 200, and/or they have had one of more AIDS defining opportunistic infections, then an AIDS diagnosis is usually given.

Americans in general have a very sick outlook on aging, disease, death and disability, as if we're all going to live forever and in perfect health. HIV also has the distinction of having a ton of excess baggage and stigma attached to it. I know people may mean well when they say I have their pity for this "horrible" dis-ease.

I recently got an instant message out of the blue while I was logged into a chat room. What follows is pretty much what was exchanged

Him> Hi, I read your profile and it says you're willing to talk about HIV. Is this true?

Me> Yes, what's on your mind>?

Him> I'm terrified of AIDS. If I ever found out I had it, I'd defintely commit suicide. I can't think of anything worse a person could get.

Me> Something seems to be bothering you. Has someone you know died from AIDS, or do you have friends with HIV? There are other medical conditions that are as bad or even worse than HIV you know.

Him> NO I don't know anyone who has HIV and don't want to either. I feel very sorry for you. You're going to die and that is so tragic. Ther is nothing worse than AIDS.

Me> I'll be honest, living with HIV is no picnic and some of the worst part is dealing with people's fear and ignorance. Please don't feel sorry or pity my condition.

Him> Yes but you have it and you're going to die.

Me> Sigh, the fact is we're all going to die from something when our time is up. You contacted me for a reason. What is it you really want to talk about? I can tell you are very frightened by HIV.

Him> Yes very terrified. What can I do to absolutely guarantee I NEVER get HIV. I always have safe sex and don't do drugs.

Me> There are no guarantees you will never die, but if you want to 100% avoid getting HIV infected, don't have sex period, never get a blood transfusion, never do IV drugs.

Him> But you're going to die, admit it!

Me> Sure we're all going to die, death and taxes are the only certain things in life. How old are you anyway, just curious?

Him> I'm 23, why?

Me> Ahh OK, when I was your age, I was just as afraid of dieing, but there was no such thing as AIDS yet back in the early 70's. I'm pushing 60, and I've lived 20 years past when they told me I was going to die. Look, take care of yourself and thanks for IM'ing. If you ever have any questions or want to chat give me a holler.

After that the kid blocked me, which is making himself invisible to the selected profile so they cannot contact him. I still wonder what was really bugging him.

More to come in a later posting...