October 22, 2010
"D as in Dog," as in my dog Romeo is doing much better since my last blog. We have both recovered from the vicious dog attack. From July 16 when the attack occurred to September I am happy to report Romeo has made a complete recovery. He's playing with other dogs, happy, friendly, barking and acting like nothing ever happened! He probably thinks he won! My scars, like Romeo's, are still evident -- but he has fur covering his, thankfully, and I don't. My big scars are on my knees!
Romeo -- My heart goes out to you with LOVE!
I want to take this opportunity to thank everyone including TheBody.com for supporting Romeo in his recovery. The donations have helped tremendously in getting his medical bill down from $5,600 to $3,000, a big difference. All the emotional support from comments and other links that posted Romeo's story are deeply appreciated. Thank you all very much.
Now back to my healthcare. My quarterly check-up on both viral loads (I'm co-infected with HIV and Hep C) was fantastic. My HIV viral load remains undetectable, my T cells are in the 1,200s and my Hep C viral load is minimal without ever having taken any Hep C treatments such as Ribavirin or combination therapies. I monitor my liver carefully as I do my HIV, eat healthy as I have blogged about previously, and I've taken Milk Thistle and vitamin C daily for many years. Quite remarkable since I have had Hep C for 39 years -- then referred to as non-A, non-B hepatitis -- and HIV for 25! I'm a walking talking Petri dish!
I was facilitating a speakers training for Being Alive on my 50th birthday six years ago when they surprised me with a 50 in flames on my birthday cake! Shocking! People asked, "How does it feel to be 50 now?" My answer: "Fabulous, miraculous, amazing!" I didn't expect to live this long and as Bette Midler says, I look good! So exercise and eating well has benefited my life in spite of having two killer viruses. I wear 55 sunblock to protect my skin especially living in LA. Youthful basking in the sun is history. Now it's about under an umbrella. Sun's not for tanning anymore now that you can spray it on!
At 56 years young I'm proudly in the new category of Aging with HIV. Those of us who have been around for a few double digits and are card-carrying AARP members, are now living what was once only a visualization in our meditations: living to see old age and better yet, the end of AIDS. Unfortunately I am not writing about the end of AIDS, the success of a vaccine or a cure, at least not yet, but it is the end of AIDS as we knew it.
Over these 25 years I have met many distinguished physicians who were on those first front lines of the AIDS epidemic in the 80's. Dr Jerome Groopman in Boston, who challenged me by saying, "My health was just an illusion" when I turned down being in one of the earliest trials for treatment. Since I was healthy I had that luxury. My reply: "I ran five miles today and that's not an illusion, that's reality!" I was witnessing friends suffer the side effects of early treatments and no resolution to their condition. So I kept it simple. My mantras: "If it's not broken, don't fix it!" "To thine own self be true." "Physician heal thyself." " Let thy food be thy medicine." The thespian approach to medicine! Putting into practice those philosophies I became my own best physician while remaining teachable and open to what the medical profession offered. My own instinct, G-d centered choices and educated choices have served me well.
Fortunately for me living in Boston I could attend medical seminars open to the public in the most prestigious colleges in the country, continuing to educate myself on anything and everything there was about HIV/AIDS. I attended several of Dr Anthony Fauci's lectures regarding the AIDS epidemic. These first-generation HIV/AIDS specialists and researchers and public health activists were the beginning.
My exposure to them led me to working in what was then a new field, AIDS work. I began working at Harvard on a study called Project Outreach focused on addicts and HIV, primarily IV drug users since they were the second highest growing risk group at that time on the East Coast. Being on the front lines of information and using that education has led me to where I am today.
I believe the choices I made back then have helped me maintain the quality of life I have today. I did not see the point in starting treatment until I needed it which meant that I would need to have symptoms, begin getting sick and pray there would be a cure or effective treatments in time to save my life. By 1995, when those symptoms appeared, treatments were available and effective for me. First 19 pills a day, now three pills a day, less toxic and still effective.
Treatment options improve every year where HIV was once a death sentence. We have HIV specialists providing patients with new information, and AIDS conferences providing updates, breakthroughs and community. World AIDS Day replaces endless memorials and new generations of smart young researchers, refreshed with innovative ideas, are taking on the modern challenges of long-term survivors and HIV. Aging without HIV takes courage so I feel practiced at living with less-than-perfect conditions -- now adding the aging process into the mix, getting tests for bone density, brain functions, heart disease and hormones just like everyone else.
But how do we differ from those not living with HIV? How does menopause affect my HIV? How does it affect my treatment -- or does it? Is it long-term HIV infection that is causing some of the brain function issues that so many of us are dealing with, or is it the side effects of taking the meds for so many years? How does it vary from female to male as we age? Are my low levels of vitamin D related to my HIV or is that par for the course now that I guard myself against sun tanning?
I'm told that most people are in need of Vitamin D so here we go, a new study for Vitamin D. Hopefully this new study will provide some answers. I am still on the first front line, first generation being a longtime HIV-positive woman who is aging. There are no previous data on women aging to provide information so there's a lot to learn from my living-with-HIV experience yet to come. Hopefully clinical studies for this will enlighten the next generation aging with HIV. I know that heart disease and aging brain functions are always frightening, especially when they could be from long-term infection and possibly the treatments that got us this far, but we must focus on what is working. The fact is that I am alive and well, as are so many others who wouldn't be here if it were not for the amazing progress made by these clinical trials and researchers. The journey continues with aging with HIV. And thank G-d we couldn't be further away from where we began in the 80's.
With this video, let me introduce you to Dr Jordan Lake, Clinical Instructor in the Division of Infectious Diseases. In 2009 she completed her Infectious Disease Fellowship at UCLA and I am fortunate to be one of the patients she sees at the UCLA CARE Clinic along with my longtime HIV specialist Dr Judith Currier.