Newly diagnosed at 49
Well, May 18, 2017 is one date I won’t forget. After sitting in my general practitioner’s office for an unrelated issue for four hours and having to tell them I may be HIV-positive, I came home exhausted. My phone rings; it’s the local health department, where I had the preliminary prick test (positive) and the follow-up “suck me dry of blood” test. The hits just keep coming. The first test didn’t faze me (I was like “I got this!), but this one has me with one foot in the grave (“Game Over!”). I managed to survive my teenage years in the ’80s during the infancy of HIV/AIDS unscathed, and now at 49 I’m reeling from this diagnosis and the hoops I now have to jump through to get treatment. I’m not sure I’m up for this fight. I got in the tub earlier and unfortunately I’m too big or the tub was too small to drown myself. Wednesday it was back to the doctor to hear my treatment options. To say I’m down is an understatement, but I’m not out...hopefully. Thanks for the letters of encouragement in TPAN, it’s been one hell of a day! Tomorrow the sun shall rise, and so shall I.
—Jon, via email
Editor Jeff Berry responds: Dear Jon, Thank you for your email and for reaching out. Hearing the news “you’re positive” is difficult at any age; I imagine it has to be especially hard after having survived the worst of the plague years. But you’re not alone, I have friends and people I know who also tested positive later on in life after having made it through the ’80s and ’90s. Some feel guilt and shame, and there is often a belief by others that they should have known better.
But HIV and AIDS are not a punishment, or for those who are guilty of something. It’s a virus, plain and simple. I’m glad to hear you are considering starting treatment, and have a positive outlook (no pun intended).
Sharing people’s stories of how they came to terms with living with HIV is what we do, and I’ve come to learn that it can be the most powerful instrument of change for many who are struggling, just like you. Thank you for sharing your story, and I’m glad we could be there to offer encouragement during this difficult time. Please don’t hesitate to reach out if you have any questions, or just need someone to talk to. Best regards.
Jon responds: Dear Jeff, Thanks for the quick response. I will get on the mailing list, but only after my family has been informed and gets accustomed to my diagnosis. I live in the South, things are different here. ..but attitudes are changing—slowly. I did pick your publication up at my doctor’s office yesterday and it helped to read the stories of others because I seriously thought about ...well, you know. I know this next week will be pure hell with appointments and lots of stress, plus thinking of my family and how to tell them about my diagnosis. Thanks for everything, Jeff. TPAN really helped me through yesterday. I’m down, but I’m not out.
You are not alone
Thank you all so much. I really do enjoy reading Positively Aware. It helps me out and makes me feel like I’m not alone. I love it.
Cover to cover
We are all truly grateful for your efforts in producing Positively Aware, but especially for the special drug guides for HIV and hepatitis C. By reading from cover to cover, we all are staying up to date with the latest information concerning HIV and what possibilities lie ahead for the future with new treatments and potential cure. We look forward to receiving Positively Aware.
—Steve Palermo, RN, MBA, CPHQ
Florida Department of Health-Hillsborough
I have written about being a long-term survivor. What I didn’t talk about was my cure from hepatitis C (genotype 1-A). I took the relatively new drug called Harvoni. The side effects were diabetes and being flushed with red. I looked as if I spent the previous day in the sun without solar block. I went to the ER and was given some drugs to combat the redness. Ever since then I have had dermatitis. I am glad there are new drugs available for hep C. Just taking a drug as if it is safe is not a good idea with any drug one takes. I am glad to finally be cured of hepatitis C, but I know that I can catch it again.
—Bob Brown, former TPAN volunteer
Editor’s Note: Bob may also have received ribavirin, which is associated with rash.