PA at the VA
At the Hines Veterans Administration Hospital [in Maywood, Illinois] this afternoon, Dermatology and then the pain clinic. Blessed this place is here for me. Check out some of the reading material here on the fourth floor. The ID clinic is here. I put PA out after yesterday’s HIV self-help/education group—feeling positive.
I am an HIV-positive gay man currently serving time in Oregon. As an Australian citizen who was holidaying in the United States when arrested for a DUI-related incident, this has had some effect on my health, mental and physical. Fortunately I have been able to find stability in my incarceration by facilitating the hepatitis, HIV, and AIDS awareness program here at Deer Ridge Correctional Institute. As a result of this, I find that people in the community of Deer Ridge are more open to speaking to me regarding their diagnosis than medical professionals (who I always refer them to as well). It was in one of these conversations that a fellow inmate showed me your magazine. What a revelation and wealth of information. Thank you for the service you provide and the thoughtful manner in which you deliver it.
Thank you for running my letter on long-term survival with HIV (Insights from a former volunteer, September + October). I hope people will be encouraged to talk about their experiences, so that we can help one another.
I have had HIV for about half my lifetime. I wish I could convince everyone that has told me I “have it easy” because I don’t “have to be employed” that I wish I could work! I can’t tell you how many times I have nearly slammed someone for telling me that. Yes, I don’t work because I am too weak to do so. My labs are okay, but the wasting is painful. I would love to have a useful life again. The time one can spend earning a living, going to college, or having a family (whatever orientation they have) is slipped into time on the telephone trying to have a drug approved for payment.
The only thing I don’t like about my housing is being so private about being gay and my HIV. I’m reluctant to get to know anyone. I was able to get a Section 8 voucher after the friend I was taking care of died. I am now in a safe “old folks home” for people over 50 because it accepts Section 8. I was lucky because the wait list wasn’t very long, and I got my apartment in three months. It’s safe and secure, and it’s actually a very nice apartment.
After describing my situation, one might think I am clinically depressed. I am reasonably happy. I am thankful that I can share my experiences to help others. I miss being a volunteer. I wish I could be more active.
San Jose, California
‘Don’t want to deal with it’
Thank you so much for sending me POSITIVELY AWARE. I would still like to receive it. On September 27, 2016 I saw my doctor and asked her to stop ordering my Isentress, lamivudine, and Viread. I’m not looking for sympathy. It is a choice that I’ve been thinking about for a long time. She asked me to sign a refusal form and I did. My last count was CD4 100, viral load 23,000. I’m tired and don’t want to deal with it. All my friends gone—my lover, too. Take care, God bless all my family at TPAN and all around the world! Much love to you all.
Hughes Unit; Gatesville, Texas
*Editor’s note: Thank you for your letter, and for sharing your situation. I can only imagine how frustrated you must feel. Many long-term survivors get tired and lack the will or strength to keep on fighting. But I hope you will reconsider stopping treatment. Have you requested a resistance test? Since you have a detectable viral load it may be that you have developed resistance to one or more of your medications. A resistance test would show that, and it’s possible you could switch to a different regimen to bring your virus under control, which might help improve how you feel and possibly get your T-cells back up. Whatever you decide, I wish you the best. —JB