Online talk show host Positively Dee said, “It is 19 years since I have had HIV. In the beginning it was a struggle. I was scared and very sick from the medication that was prescribed to me. Back then those diagnosed were taking about 12 medications per day or more. I was taking 15. Each had specific directions, like take this pill with food; this one before bed; don’t eat with this one; only take with water. It was like being in school and I was afraid to not follow the directions to a “T.” I laid all the medication bottles across the table. Now I am thankful how far the medications have come being that I am only taking 2. On Sunday June 5, we celebrated Long Term Survivors Day for those who have been diagnosed with HIV for 10 years. Bless all the long term survivors with the strength and courage to keep fighting this fight.”
Advocate and author Nancy Duncan wrote: “Kudos to all my Long Term Servivor friends. If you are reading this you’ve made it another year! Thirty-one years for me, and its been a bitter sweet journey for sure! The illnesses, grief and fear, the mourning of friends who are long gone, but helped us get to the place where we are now. Living with and dealing with stigma that never seems to go away. Then there is the joy of knowing we survived, and we are the first generation of LTS’, and many of us are thriving as well. Only we know what that traumatizing time felt like and the realization stemming from the birth of HARRT (highly active antiretroviral therapy) , that ‘Oh, I am not going to die yet but I’m not cured, so what now?’ We have survived one of the deadliest plagues in history! I just wanted to see my son turn 18. And now he is 36! YAY to you all, I wish us all another year of health, happiness and many blessings.”
I asked Ms. Duncan, my friend, to give us an inside look of a celebrant. She wrote the following words: “Aging with HIV is a condition that is a first time in history occurrence. Long term survivors like I, who survived HIV/AIDS before the birth of HAART thought we would never have to deal with this because we thought we wouldn’t be alive. We are now living and experiencing accelerated aging. I am now 58 and have arthritis in my hand for over 10 years now and also moderate to severe osteoporosis. These are ailments I expected to not happen to me so soon. But it’s not just me; others have also been experiencing this. We have a kind of post traumatic stress syndrome from years of living with anxiety and uncertainty of never knowing what was going to happen next as far as illness and even death. In the 90’s, death was looming over me constantly. I managed to survive long enough to get the new ARV’s which came out in 1995. They certainly made a huge difference in my health. For the first time in years, my T-cell count went up, I was feeling and looking better. So educating and personal testimony was what I started to do, being a part of the solution instead of the problem. We still have no cure or vaccine, so education is extremely important when it comes to HIV transmission, because even after 35 years, still many don’t know enough about HIV, i.e., how it is transmitted and why they may be at risk and should be tested. I am grateful to still be here after living with HIV/AIDS for 31 years now, but I still have that ‘I’m not out of the woods’ feeling constantly and still experience a bit of anxiety when I get labs done, even thought my T-cell count is now high and I’ve been undetectable since 2003.”
Thanks Nancy Duncan for sharing. Can you tell if a person has HIV? Kidshealth.org tells us in “Making a Change Your Personal Plan” that you can’t tell if some one is infected with HIV. Often the only way to know is through testing. In fact, people who are HIV positive might not even know that they have the virus. Make sure anyone you’re thinking of having sex with is tested for HIV and other sexually transmitted diseases (STDs) before you have sex. Then use condoms EVERY time you have any kind of sexual contact. Using condoms is important even when both people have negative tests because it can take up to 6 months or longer for an HIV test to show up as positive after a person has become infected with the virus.
June 27 is National Testing Day. HIV/AIDS testing is available free at many locations. Find one at www.aids.gov.
