Joe's POZ Blog

Rather than posting sporadically I am going to try and post an entry each day for the next month and see what develops. While I have enjoyed the major entries, they by necessity always seem to deal with one issue, given their length and they come infrequently as they take a while to write. So let's try daily and see what develops?

What Price Beauty?

Now that Sculptra (formerly New-Fill) has been approved for correcting HIV-related facial lipoatrophy (fat loss), Stephen and I have been curious as to how well the product works. We got our first peek at potential results, when we found out that an acquaintance has had 3 sessions using Sculptra and the results are stunning. Bob looks great, not that he ever looked bad, but the enhancement or reconstruction of his face is just amazing. It looks very natural and Bob reported that he has had no real issues with the treatments.

So when we found out that the French drug maker Aventis was offering the drug for free to HIVers making $40,000 or less, our curiosity was further piqued. But when we found out that one of my previous doctors, has been the only doctor trained in the US by Aventis to administer Sculptra and his practice is in Miami, well we just can't resist checking this out. So we are going to do some legwork and find out the costs and issues involved and I'll report the results back here.

I can't believe that we are actually going to explore some face/body reconstruction options instead of having to fight some new side effect or illness. To think that there might be a way to reverse some severe fat loss and regain some lost looks is potentially exciting. Unfortunately Sculptra is not permanent and might require "refreshing", but those are all details we'll explore.

One of the hardest things about surviving with HIV is when you must deal with the physical damage that the disease, side effects and medications can cause. To watch your body change and degrade and know there is little you can do to reverse the damage. Many of you know what I mean, when you get that "HIV look" and it seems time that somebody finally listened, I'm sure with thoughts of dollars floating through their heads, but still they are finally starting to address some of our needs.

To think I could regain some of what I have lost physically, to this disease, is really exciting. I expect it will still be expensive, even with getting the compound for free, but just the fact that the option exists, really bodes well for future developments. Until I know all the details, I won't know if this is a viable solution, but it's sure nice to start having some options.

I don't know if I am missing something, but I just don't understand when I hear people talk about how HIV is the greatest thing that ever happened to them. Huh? They will then continue on how getting HIV has allowed them to reassess their life and goals or made them a better person, etc. and all I can ask is "what can they be thinking?" Or the strangest line I have heard is when someone says that, "HIV is the greatest gift that they have ever received" and all I can imagine is how dismal their lives must have been to have HIV represent the greatest gift that they ever received. How a deadly virus can equate with a gift is beyond my grasp. What I can believe however is they might be confusing HIV's role in their life, because HIV never gave anyone anything, other than HIV.

What I think happens is that people are confusing the virus for the much needed wakeup call that contracting HIV can represent to many people. But HIV, onto itself is nothing more than a virus; it cannot affect change or anything else for that matter, as it remains only a virus. Maybe what they mean to say is that contracting HIV has forced them to reevaluate their lives and their direction and enabled them to make some concrete changes that will have a positive effect on their life and their infection. This is the same thing that happens to millions of people daily, when something rips their world apart and drastically changes their perspective. But you never hear a cancer patient extolling the virtues of their particular cancer.

HIV does not bring to you anything that you do not already possess. It will make you no smarter, kinder, nor happier than before your infection because the traits that you need for those things to happen are traits that you already have. You might become more refined, in some ways, but you will not somehow miraculously become an introvert, where you were once an extrovert. I just don't think that change works that way. Change comes from inside, utilizing the material that composes your being and change seldom reworks who we are as a person. Rather it seems to refine us and that's why I think this is more of an issue of perception.

For many of us, when we became positive, our view of life changed, many times quite dramatically, to be replaced with a different outlook, but not because of our HIV infection, but because our perspective on life changed. I think the wake up call that HIV can represent, is what can initiate personal change and so maybe the confusion is understandable. But I think we do ourselves a great disservice when we credit some deadly virus with the hard work that comes with affecting real change from within ourselves. HIV never gave me anything that I would want, but contracting HIV did change my life.

It forced me to change my outlook and to refine those skills and traits that I might have ignored for too long. It did not change who or what I am, but it did change how I react to life and its challenges. When my perspective changed, so did my goals and aspirations. Yes I might have become more compassionate and understanding, but those were traits that I have always had and now they have simply become amplified. HIV never brought anything to the table that was not already there.

No I don't think HIV ever gives any of us anything, because it cannot. If you want to be grateful for anything, why not appreciate yourself for the intestinal fortitude you possess which has allowed you to make solid healthy decisions regarding your life. HIV deserves credit for nothing, as you are the one who did all the hard work, so give credit where credit is due.

Somehow I made it. I never thought I would when I tested positive 21 years ago, but sure enough I reached the big 50 and I suppose my mid-life crisis. But I'm not sure that it is a crisis, because I don't feel any different than I did when I was still 49. I used to tell my therapist that I was concerned because I could not imagine myself at 50 and she dismissed my lament, saying that most people are not good at seeing themselves in the future. So I never paid much attention to it, but now that my 50th year is winding down, I start to wonder.

My life is nothing like what I imagined it would have been in my twenties or even thirties. In many ways it surpasses my wildest expectations while at the same time carrying many regrets and trepidation about the future. My health has changed dramatically in the past 20 years and I begin to fear how long I can continue to cheat real constant suffering and even death. While I live a relatively healthy life and exercise and eat right, sometimes these things are just not enough. I seem to be more in tune with my body and every new ache or pain causes me to question if my health will remain. And every time I contract some disease, it seems to take longer, each time, to rid myself of it.

So I did what anyone suffering a mid-life crisis should do and I bought a new truck. My SUV was 8 years old, so out with the old and in with the new, at least vehicle wise. That helped but still something was lacking, so why not bleach my hair: stark white. Yes, that seemed to do the trick. I reinvented myself with a $7 box of blonde lightener and I must admit the change is striking. I get a lot of compliments but most comments center on whether my previous salt-n-pepper hair was real or Clairol. But I don't care because I feel better about myself and often it is the little things in life that matter, even if they do come out of a bottle.

From what I have heard, my mid-life crisis is rather mild. So onward, until that seven-year-itch that's slatted for next year.

I just received my first labs since dropping the Combivir and starting Truvada and the results are encouraging. My CD4s went from 519 w/ 24% to 651 w/ 26%. All the other labs were in the normal range and my doctor commented that on paper, I look like a fairly healthy man for my age. So that got me to thinking, had something about me, stayed fairly consistent over the years, which could somehow explain my continued survival and current good health?

I've been poz for 21 years and during that time I have been married, single and partnered, for varying amounts of time, so no constant there. I worked the first decade of my infection and have been on disability in the second decade, so again no constant there. My health has ranged from decent to DOA minus 2 weeks, so still nothing constant. As I kept thinking of attributes, or influences, nothing seemed to fit, until I settled on one very important constant. Ever since I tested HIV positive I have further refined my positive outlook on life and the resulting positive energy that it provides.

I took the term: positive energy, from one of my favorite posters, because I think it best describes the one primary influence that I have nurtured in my life, since my infection. A positive outlook or positive energy; so what exactly does that mean? To me, it means believing, truly believing in yourself and your outlook on life. It straddles a very fine line between delusional expectations and realistic optimism; it is being able to find that silver lining, in even the direst of situations, because often one exists. And many times you can follow that lining to a better place.

It enables you to believe that your medications are indeed helping you, even as you are vomiting from some drug-induced side effect. It helps you to formulate reasonable expectations and modify them, as reality dictates, without crushing your spirit. It can provide a very supportive crutch at times when it seems that you have little else. It's realizing that you can shape and control your own outlook on life and that maybe you can create your own positive energy.

It's surrounding yourself with people who contribute to your well-being and you being just as comfortable in projecting and in receiving that energy from others. It can certainly be found by helping others, because no matter how much energy you expend in doing that, the positive energy will be returned and amplified usually when you least expect it, yet need it the most.

Or maybe it is being realistic about your approach to life, balancing the scale so as not to become either a victim or worse yet, a martyr. It helps you to know that it is all right to be afraid and fear the unknown, yet refusing to let that fear hold you captive. It's believing in your ability to manage your own health and realizing how much power you truly possess over your health. It's learning how to recognize positive energy and harnessing it for your own use.

For me, it's paying more into the universal Karma bank, than what I withdraw. Optimism comes naturally to me. I still believe in the inherent good of people and no matter how depressing the world looks at times, I refuse to become cynical. I believe that positive energy begets the same and that it can be shared. I even believe that not all nice guys finish last.

It allows me to enjoy all that surrounds me and to temper my dreams and hopes with reality, yet unbridled hope always remains. Believe me, I understand my reality; my limitations and I have no delusions that my life is going to get any easier. I do not reside in an Ivory Tower and my feet remaine firmly planted in reality. But I will always have the power of choice. I choose to view the glass of life as half-full and in doing so I control my perceptions and reactions to my surroundings. I like positive and it seems to work well for me.

I believe that a positive outlook or energy, or whatever you want to call it, has enabled me to eventually thrive with HIV. Trying to see my current life without the effects of HIV is fruitless, so I strive to see myself realistically, yet I refuse to give up hope. Given the challenges and the journey for the first 21 years, I can't think of anything that has been more instrumental in getting me this far, than the power of positive.