World AIDS Day December 1 2017

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The State of the State of HIV 2017 Reflection

Lily says…So, another year in the fight to end AIDS has come and gone. As Red Ribbon celebrations happen around the World it is time for some reflection, right here at home-Nebraska “The Good Life” State.

Well “times they are a-changing”! Talk of rendering the HIV neutral so we’d live with it just in a non-replicating state seems impossible but that’s where research is currently headed in 2018, and beyond…

There was a time we wouldn’t ever talk about the “end” since we were still actively in the “trenches” busy fighting the daily battles of being HIV+, and thoughts of a cure weren’t even whispered.

So, it is necessary to look back once-in-a-while, like once a year on World AIDS Day and reflect on where we used to be and what now, going on 30 years and counting looks like from a “long-term survivor’s” perspective.

I know there’s no way we want to go too far back or look too far forward either. It’s nice to not be so “HIV focused” though, sick with opportunistic infections or struggling with side effects of meds and treatments. It’s nice not to be the headline news or deciding on which funerals or Memorial services we could endure or stand the pain of, and yet here we are, yet another year later and another, and another…Wondering if HIV transmission will ever just be a part of our past, not the present or continue into our future.

It was a different world in the 1990’s compared to the most recent hospitalization I had a year ago November 2016.

I was in there for a bacterial infection which lasted for 7 days and was over my birthday, to add insult to the “incarceration” My bad…I mean Hospitalization!

I quickly noticed that there had been a huge shift in how the medical staff treated me while I was there and didn’t resemble the paralyzing fear of the 1990’s whatsoever.

By receiving timely, medically-based education over the last 30+ years medical staff has become less afraid of HIV and this has made a direct impact on patient care for the better. It’s also a direct accolade to those HIV+’s educating and advocating by continuing to live, despite what they might have heard a Nurse’s Aide mutter under their breath about our possible death back in the 1990’s.

This hospitalization:

  1. No one I said, “I have HIV” to, even flinched.
  2. No one donned the hospital garbed from head-to-toe anyway even though I was not being quarantined or had any restrictions on my hospital door just to enter my room or give me meds like back in the 1990’s when it used to happen all the time.
  3. Everyone touched me without gloves, except for when Universal Precautions were the standard of care like blood draws or care of IV’s.
  4. The nurse didn’t bring in my food tray because the food service staff was too scared.
  5. No one wore a mask, well just because…
  6. My hospital room door was open more than it was closed.
  7. I was not isolated or left wondering how many times I would have to explain how “they” were more of a risk to me then I could ever be to them.

It was a relief to say the least. Finally, medical information has caught up with the epidemic. Well, at least for the most part.

the “Face of AIDS” has changed in that less people progress to the dreaded AIDS diagnosis much anymore. There is a continued push for regular testing in high-risk groups, and more testing for STI’s in general means HIV isn’t singled out helping to decrease stigma around HIV testing in general. This is a start.

Early detection of HIV is the biggest key today in keeping a person from getting sick like the old days of the 1990’s when the cost to treat was astronomical with most patients becoming seriously ill, often with illnesses resulting in their death.

Even today, with high drug prices for HIV meds, these treatments are the “Gold Key Standard” and keep people “immuno-suppressed”, vigorous & active, as well as a healthy member of their community long after an HIV diagnosis has been given them.

There are however, still too many places in Omaha where people don’t understand HIV transmission or think they can get it here, and that thought process holds true throughout the state.

Unfortunately, Nebraskans continue to contract HIV at the alarming rate of approximately 1 person every 2 ½ to 3 days, so the work for now isn’t done!

Slowly but surely over the last few decades we have more practitioners and nursing staff, with the willingness to see people with HIV across the state and understand HIV as a manageable chronic disease which is all we used to want. We still see advances and setbacks and it makes us weary for what the future could bring.

In most cases I am fine with this easiness the medical field seems to have around me here of late, but it is also a little unsettling at the same time.

It seems like complacency can only lead to more HIV transmission, stigma and stereotyping of the virus, which won’t help end the epidemic.

I am concerned for my Grand Daughter who might grow up in a World that talks less about HIV than ever before without achieving a cure in her lifetime either.

I am concerned about all younger people who might like me never consider that they could be at risk for HIV, and then end up with an HIV diagnosis too young.

A late friend of mine JimmyMac once said he missed the days of going to the Capital and banging a drum to get some attention on the HIV epidemic. Is that what we need now? I’m not sure it would make a big difference today.

Do we do more with our voices? Call our Senators or Congressmen demanding funding for Ryan White, or to protect monies from the Federal government that keep people like me alive longer? Sure, we do!

Are all the answers now in the science of a vaccine or more powerful HIV meds rendering HIV harmless?
We’re watching and holding our breath…

Personally, I am glad I have lived another year. If nothing else I can shake my finger at HIV and say, “You don’t have me YET you ‘lil b*tch!”, but what else?

  • I can have hope for an HIV-free future, which I never thought possible until the last few years.
  • I can continue to educate those in my community about the reality of living with HIV and how it is still a CHRONIC disease, with daily meds, and treatments, and how HIV is one choice away for them too if they aren’t careful.
  • I can get involved at the state and federal level advocating for continued funding for research.
  • I can make my voice heard.
  • I can be visible as someone living with HIV and surviving to encourage testing and reducing stigma of who gets HIV.

And until next year…Lily&Q’s say, ”Be Strong & Keep the FAITH!”

World AIDS Day Factoids:

  • First World AIDS Day was observed in 1988.
  • First World Health Observance day ever instituted and observed every December 1st around the World.
  • Observed to unite the world’s population in the fight against HIV, to show support for people living with HIV, and to commemorate those who have died from an AIDS-related illness.
  • The first two years of the observance were themed around young people and infants to help de-stigmatize HIV and show it was a family issue.
  • The Red Ribbon is shared with MADD (Mothers Against Drunk Driving) adopted in 1980. In 1985 the Red Ribbon was used after the kidnapping, torture, and murder of DEA agent Enrique “Kiki” Camarena to raise awareness of the growing drug problem in the United States and is known as “Red Ribbon Week”. Finally, in 1991, the Red Ribbon was adopted by a group of artists to raise awareness of those living and those who had died of HIV. Each year this date is recognized globally for the fight against AIDS.
  • Here is A red ribbon adorns the North Portico of the White House Friday, Nov. 30, 2007, in recognition of World AIDS Day and the commitment by President George W. Bush and his administration to fighting and preventing HIV/AIDS in America and the world. White House photo by Eric Draper

Lily’s HIV Diagnosis-Part 1 “It was 1990…”

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Lily’s Take

Hey, it is a FREAK to hear, “You have HIV.” Of course, that punctuation is all wrong, because what your voice isn’t saying, your head is SCREAMING, No FREAK’IN WAY!!!!” Followed shortly with, “IT CAN’T BE ME! Who did this to me?” and so on, until your head feels like it is spinning of your neck. Projectile vomiting is not out of the question here.

After scraping myselfoff the floor, and pasting some essemblance of my face back, well on to my face, I then like a Zombie make the mindless walk out the door of the testing facility, all the time feeling like I was somewhere between a full out freak’in panic attack, and the serious need to hit something really, really hard. Several times until I felt better, or was too bloody.

Maybe THEY are wrong? Not me after all?

Once the fresh air hit me, I finally struggle in a long, deep breath, stopped to get out a cigarette, Coughed a few times, and it was then it hit me that the people around me on the walk, had absolutely no idea whatsoever what just happened to me a few seconds ago-Or at least it seemed like just a few seconds ago, especially since everything seemed to be going in slow motion.

They however, looked at me no differently, despite the freak-out happening behind my “Big Baby Blues”.

The HIV Twilight Zone:All of a sudden it’s Lonely. Choaking fear. Scared Sh*TLESS. Where should I go, who should I tell. I must think. this won’t end well, all flash over and over again in your head, like a LosVegas Casino marqee. Nausiating. Exhausting. Inconvenient. Loser. Whore. Slut…

Um, what did you just SAY? Could you repeat that please? HIV?

It didn’t help any that I was considered the least likely to ever…Fill in the blank, in High School, or in my circle of friends, either. Nerd/Freak I was, so this diagnosis just confirmed how “Special” I was, like my family had been saying about me since my birth. Little did they know yet, just how freaky things were goihng to get.

It took me wweeks to tell anyone. Well not totally true. I called “Mr. Last Kind-a Perfect” and unburdened my soul and test results on him.

I am not sure what I really expected out of him, still trying to come to grips with my HIV status myself, but I sure didn’t expect or I guess, want to believe that he would do me the way he did, either.

what he did say confirmed for me that I’d better strap on some body armor, “grow an inch thick layer of new, tougher skin, and prepare for the battle of my life!

Him: “Umm…Well, aahhh…Um I’m not too sure what to say…”, the uncharacteristicly strained voice I thought I knew so well, stammered out in a voice I suddenly didn’t recognize.

“Well me neither. Shouldn’t you go get tested, too? It only takes a little blood…”, I choaked out

He interrupted me, saying, “Why should I, you dumb B*tch? I don’t have anything wrong with me!” He continued on without taking a breath, “I don’t want anything to do with you ever again…EVER!”

If that wasn’t humbling enough, or dramatic enough, he screeched, “I hope you DIE!”

As the line went dead.

I felt dead.

I caught my reflection in the mirror on the other side of the room, and realized that I was alone, and that I was going to do this new chapter of my life evidently ALONE, too.
I was going to have to fight, become a warrior to save my own life. I sure didn’t see any line of those great friends of mine, who supposedly “always would be there” for me, forming behind me, either!

I was positive for a few STD’s not just HIV wen I got my test results. Why the H*LL NOT?! Embarrassing, but I’m still glad I got tested when I did. Before I left I was given meds to cure my “Other Little Lovelies”, too. What a relief, not to have to go right away to another doc, I was still a little shelshocked…
Part one of three…