Image
AGLM logo

I'll Trade You

Submitted on Jun 6, 2019 by  Red40something

A friend and I were having a conversation about the recent news about the second patient cured of HIV (or is he in long-term remission? I need the medical community to come to a damn consensus, 'cause there is a damn difference, but that's a different story). She and I were talking about the process and she was saying that she was ready to sign up. I told her about how it was not for everybody because it requires a specific set of circumstances and it was dangerous and people died from this procedure. She kinda quasi-jokingly said well then, "Let me be number 10 after they work out the kinks." (In my head I'm thinking, "Oh, like waiting for the second generation cell phone to come out so it doesn't explode in your pocket, SMH") I said that while it was encouraging, I would wait a bit. Her follow up was that given a chance, she'd "trade this shit (HIV) in a heartbeat for a little risk." We moved on to three of four other subjects in the next 15 minutes like women do sometimes, topic to topic, but the "trade it in a heartbeat" stuck with me for a long time.

I got to thinking, would I trade it in a heartbeat, and for what would I actually trade it? I'm damn sure not going to trade another person for it, only to have them have to learn to navigate a life with it. So where am I trading it? Medically speaking, if we remove social stigma and societal fear from the equation, what condition would I trade my HIV for?

I gave it some thought people! I had time for it. Hear me when I say unto thee, I gave it not only "woman with HIV" thought, but also from the "Nurse" perspective! None of this is to make light of any of the following conditions in any way! It is a perspective look at what I have vs what I could have.

Would I be willing to trade my HIV for diabetes? Not pre-diabetes, actual diabetes? I happen to be a little bit of a foodie (as long as it's not some weird ass color or texture) and I love me some Ben & Jerry's Chunky Monkey ice-cream. The idea of giving up sweets, having to do finger sticks every day, potentially multiple times a day, and have to give myself insulin every day? My 9 vials of blood every time I go for my check-up is more than enough needle sticks for me. Finger sticks hurt. Plus the fringe worry about diabetic neuropathy, poor wound healing and eyesight issues? (Told you, nurse thoughts.) Umm, Nah. Not trading.

Could I trade it for a gastric problem? Like say Crohn's Disease or IBS (irritable bowel syndrome). Anyone taking HIV meds knows that there is an element of gastric discomfort already depending on the medication and your body. I sometimes get alternating constipation or diarrhea (forgive the overshare, but we're friends right?), but what I don't have is the pain of Crohn's or IBS, the constant bloating and gas, the constant anxiety of wondering when an attack will come, needing to know where bathrooms are for quick access, or the need for a special diet in which I have to limit certain foods and drinks. (There's the mention of food again. I think I'm in denial about being greedy.) Sooooo, that's a no. No trade.

What about for the loss or damage of an extremity? A hand or a foot? I make jewelry as a hobby, it helps me express my creativity and work through my problems. I need my hands for that. As to my feet, not only do I have 250 pairs of high heels to wear, but I also roller skate. Skating centers me. It gives me a sense of freedom and peace I can't adequately put to paper. Those are specific things that do not take into consideration the hundreds of things you do daily and weekly that involve the use of your hands and feet. Not. Gonna. Trade.

*Side note- Yes, I know that's a lot of shoes. Yes- like Imelda Marcos, except without the vicious dictatorship and craziness. It could be worse; I could have that many cats. Focus people.

High cholesterol and the potential for heart disease and heart attack? Stroke? The risk of suddenly passing… Nope. Kidney disease and the need for dialysis? No. I'm good.

The point is, we all have a cross to bear. Once you level the playing field by taking away the negative social aspects of HIV, it really comes down to how much you can, and are willing to deal with on a day to day with your health. Having mostly gotten a hold on how to deal with the social stigma, and how to deal with people's fear of (me/my) HIV, all things considered, I'll take my HIV over a plethora of other stuff. (I say "mostly" since there are always going to be those one off situations that catch me off guard and piss me off or hurt my feelings, and all I can I do about fear is give you the knowledge to lessen it.) I take my medication every day and my virus is undetectable and my CD4 count is stable. Therefore, I'm stable. My side effects are manageable and not a daily concern anymore. I still ride the resentment rollercoaster when it comes to taking my meds every day. One, 'cause it's a pain in the ass, and two cause it's a reminder I have HIV, but I have learned to be at peace with my truth. I have HIV. After 7 years we have our up days and down days, but my HIV and I manage, pretty healthily I might add.

Oddly enough, I have been privy to some conversations with long, long term survivors who say if there was a cure tomorrow, they might not take it. In the immediacy of the moment I would think that is bat-shit crazy. You likely do too. Whether it's from being a nurse in HIV (with HIV), or some mini internal Bat button inside me, I get it. If something has been your way for life for 15/20/30 years, at some point, it gets hard to imagine life without it. Your brain has been wired to it. It quite literally is part of your DNA. Add in the trauma it caused, and the somewhat co-dependent relationship you have with it, it starts to make sense. PTSD is real. Healthy and wise or not, it makes sense. My lot in this life is not to judge.

Now if your question is would I give my HIV up? Give it away to never be seen or heard from by any other individual on the planet again?? For a cure? In a heartbeat.

Submitted by TrixieSwizzle
1

I have been Poz for 25+ years.  T-cells started at 3, VL 500,000.  Now Tcells 603 and VL undetectable.  I understand totally about learning to live with it.  It once permeated my whole life, was on every committee, study group, advisory stuff, blah, blah, blah. I was a Poster Child for Aids, a big mouth Lesbian who was not afraid to use her words lol.  Had to let it all go, reminded me I had Aids every day.  Now the only thing that reminds me is when I take my meds and that I would give up in a heartbeat for all the other choices you wrote.  Take care Sunshine...

Red40something 's recent blog posts

Image

Members of The Well Project community at USCHA 2022.

Become a Member

Join our community and become a member to find support and connect to other women living with HIV.

Join now >

banner

Do you get our newsletter?

¿Recibe nuestro boletín?

Sign up for our monthly Newsletter and get the latest info in your inbox.

Suscríbase a nuestro boletín mensual y reciba la información más reciente en su bandeja de entrada.

CAPTCHA
5 + 7 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.

Browse Blogs by Theme

Recent Blog Posts

Our Bloggers