Surviving and Thriving: AIDS, Politics and Culture

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The National Library of Medicine encourages you to mark the date October 23, 2017 for the opening of the exhibit, Surviving & Thriving: AIDS, Politics, and Culture at Southeast Community College, (Lincoln, NE). Stay tuned here for more information.

Lily says…
We remember those days. Parts of the USA were paralyzed with fear as a new shame emerged that furthered stigmatized the GLBT community, and continued to fuel hatred and homophobia.
What started then as a whisper would soon become screams of fear and urgent pleas from the public to notice this new killer and respond to it.
It would still take several years however before HIV became a National epidemic, one that the world finally had to act in response to, as it seemed like suddenly HIV was everywhere and most of us knew absolutely nothing about it, yet it was killing our friends, family and lovers alike.
This exhibition will educate through time, where “it” started and where we are now, and how politics and culture norms have impacted the fight.

About the exhibit
In 1981, a new disease appeared in the United States. Reactions to the disease, soon named AIDS (acquired immune deficiency syndrome), varied.
Surviving and Thriving: AIDS, Politics and Culture illustrates an iconic history of AIDS alongside lesser-known examples of historical figures who changed the course of the pandemic. The title
Surviving and Thriving comes from a book written in 1987 by and for people with AIDS that insisted people could live with AIDS, not just die from it.
Centering the experience of people with AIDS in the exhibition allows us to see how critical they were, and continue to be, in the political and medical fight against HIV/AIDS.

“We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
    —Denver Principles, 1983

Explore the Exhibition by clicking here

This exhibition was produced by the National Library of Medicine, & National Institutes of Health

Fungal Disease Awareness Week August 14 – 18 2017

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Time to talk all things Fungal

Out of the 1.5 million fungi on the earth, only about 300 or so are known to make us sick.

The Center’s for Disease Control (CDC) has a list of Fungal Diseases identified which require medical treatment.

Many of them are also attributed to humans without working immune systems, with some being as simple as an over-growth of yeast, like in the case of thrush or vaginal yeast infection.

Lily says…I remember some of these too well. Many a friend in the past died of one of the fungal infections listed in this article. A few of these I’ve delt with over the decades of HIV illnesses myself too.

For instance, My Husband died in late 2001 from Aspergillosis and MAC.
Many HIV+ Nebraskans I’ve known died from Histoplasmosis over the last several decades.
I too was hospitalized four times for Pneumocystis pneumonia (PCP) throughout the 1990’s, and even though the PCP treatment got a little “kinder-and-gentler”, by the 4th time I was strongly ENCOURAGED NOT to get it again.

No kidding? This thought is not lost on me! I prefer my hair on my head not the pillowcase, or feeling like I could hurl at any given moment which by the way isn’t a great weight loss plan, or figuring out what will stay down once I eat it…As the chemotherapy list keeps going depressingly on and on… Some of that chemo smelled and tasted like kerosene, I swear!

I’m glad nowadays my immune system is virally suppressed, and these fungal infections are fewer and further between as a result.

Looking back, we didn’t always know much about someone when they died. There was a lot of medical misunderstanding as well as shame in an HIV/AIDS diagnosis to start with, but birth families were scared, shocked and were unable to process it all, so they cut off anyone and every one they thought was an “outsider”.

Unfortunately, this alienated us from our friends and our self-made family who were possibly he only support group we might have when we were sick and most needed trusted people around us.

“Word-of-mouth” in “the community” was about the only way you might find out someone was in the hospital and often it was then too late to do anything at that point except go to the Memorial service if you were lucky enough to hear about it before it happened.

Often the dying HIV+ person’s biggest request was around who was with them when they died, and yet I remember several people whose worst fear was realized when they couldn’t voice their own opinions anymore at the end and choices were just made for them out of convenience for the living who didn’t really want to know or honor what their wishes were anyway. Sad.

Please Test so You Know YOUR HIV/STI Status!
Get Tested Regularly if you’re at risk and Reduce stigma around HIV testing and treatment.

To those I only knew by a first name and maybe a last initial (Rod K), I still remember your name, and it will remain etched in my heart forever.
I promise never to forget.

Fungal Lovelies-By Name

  • Aspergillosis: Microscopy of Aspergillus Fumigatus caused by the fungus Aspergillus and usually occurs in people with lung diseases or weakened immune systems.
  • Candidiasis: Candida albicans caused by the yeast Candida. Candidiasis can occur in the mouth and throat, vagina, or the bloodstream.
  • C. neoformans infection: Caused by Cryptococcus neoformans, which can infect the brain (meningitis) in people with HIV/AIDS.
  • Ringworm: Caused by the dermatophyte Trichophyton mentagrophytes are a common fungal skin infection that often looks like a circular rash. It is the cause of jock itch and athlete’s foot, too.
  • Tinea Pedis: Athlete’s Foot caused by tinea pedis and survives in warm moist environments making it easy to spread.
  • Tinea cruris: Commonly known as jock itch another common fungal skin infection.
  • Histoplasmosis: Caused by the fungus Histoplasma, which lives in the environment, often in association with large amounts of bird or bat droppings.
  • Pneumocystis pneumonia (PCP): Caused by the fungus Pneumocystis jirovecii and mainly affects people with weakened immune systems.

So if this doesn’t whet your appitite for information on fungi, Here is a more complete listing of fungal infections including causes and treatment options from Merck. Introduction to Fungal Infections

Moving Forward from HIV

Some of these fungal infections were finally identified when the HIV community moved into the A.I.D.S. phase of their lives. From the beginning cases of HIV/AIDS people were getting sick of fungal infections that baffled and confused the doctor’s treating these patients and lives were lost as a result.

Now we are waiting to see what the long-term outcome might be living through the years when this list could and did to most of those around us be a killer. 

The side effects of the treatments aalso in some cases caused permanent damage, so this makes our longevity more precarious than ever.

Know your Status with STI/HIV and take Responsibility for Your Life!