+

HIV and HSV+ Writer and Blogger sharing my experience and educating the world about STDs.

[kodyshivblog]

I No Longer Blame the Person Who gave Me HIV

Over the past several months—possibly even year, or maybe two—I’ve come to a groundbreaking conclusion that I never thought would be possible.

Nearly a decade after being diagnosed, I no longer blame the person who gave me HIV.

This has been a long time coming; and, in many ways, has been an evolution that has occurred over my medical journey with the virus.

In short: I was diagnosed with HIV on November 17th, 2014, at around 5:45 PM. I was at a gay youth center when a preliminary rapid test returned a false positive. At the time, I had a million thoughts running through my head. “How was I infected?” “Who infected me?” “Was this their fault?” “Was this my fault?” These questions, and more, haunted me, all the way until a second test confirmed that I most likely had virus in my system. It would take two more days to do bloodwork at an official human resources center, and two more to confirm that I had the human-immunodeficiency virus.

To say I was devasted would be an understatement.

Even now, while sitting here writing this, I do not know who infected me. There’s no way to definitively know that. However, even with my suspicions regarding this complete stranger I never knew, I can now earnestly say these ten words:

I no longer blame the person who gave me HIV.

Why? You might be wondering.

It all comes down to this:

They likely didn’t know they had it, either.

And that’s the thing: in today’s modern medicine (and even almost ten years ago,) HIV was no longer the death sentence that it used to be in the late 70s, through the 80s, and even in the 90s, when it ravaged the greater LGBTQ+ community and killed viciously and indiscriminately. Today, HIV is a manageable illness—and may even one day be cured.

For the past two months, I’ve been on a medication that I receive via injection. Through modern medicine, this medication stays in your system for two-months intervals, at the beginning of which you receive two shots one month and two shots the next month, then two shots every other month thereafter. This ingenuity—which I know will change healthcare for HIV patients, especially when the six-month-interval pill is developed, per my doctor’s knowledge—has ultimately prevented me from having to take an extra pill every night to keep the virus from replicating in my system, something that people back before I was born could probably not even imagine.

I no longer fear dying from the disease. I no longer feel living differently because of the disease. I am HIV-Undetectable, which means that I am neither technically positive, nor technically negative, but somewhere in-between. This means that, while I do have virus in my system, it is so weak that it cannot be found under traditional testing methods. Studies with hundreds of thousands of serodiscordant couples (where one partner has undetectable viral levels and another doesn’t) show that people who are HIV-Undetectable can no longer transmit the virus to others. So long as people maintain a medication regimen, people who are Undetectable cannot transmit the virus to their partners.

In moments of quiet, I sometimes go back to those days when my mental health was so unbearably out of control, and I think of that stranger who I suspect transmitted the virus to me. I think, “He probably didn’t know.” He probably infected even infected others, without even knowing; and in that sense, I think of how much my life has changed, about how much my physical and mental self has come, and I remember these ten words:

I no longer blame the person who gave me HIV.

[kodyshivblog]

Ghostin'

and no, not the Ariana song.

So... a few weeks back, I blogged about how I went out on my first date since the pandemic started and how I enjoyed myself on it.

Needless to say: I got ghosted.

I don't claim to know why. Maybe it was a combination of my HIV + Herpes statuses. However, I'm not letting it bother me, since I've rekindled a friendship that could be more.

The ghosting bothered me at the time. I don't think it can't bother you when it happens, to be honest, especially when you're not sure for what reason it happened. But truth be told: I've moved on.

So, yeah. There's that.

[star-anise]

My girlfriend and I talk a lot about our different generations of queerness, because she was doing queer activism in the 1990s and I wasn’t.

And she’s supportive of my writing about queerness but also kind of bitter about how quickly her entire generation’s history has disappeared into a bland “AIDS was bad, gay marriage solved homophobia” narrative, and now we’re having to play catch-up to educate young LGBTQ+ people about queer history and queer theory. It gets pretty raw sometimes.

I mean, a large part of the reason TERFs have been good at educating the young and queer people haven’t is, in the 80s and 90s the leading lights of TERFdom got tenured university positions, and the leading lights of queerdom died of AIDS.

“Excuse us,” she said bitterly the other day, not at me but to me, “for not laying the groundwork for children we never thought we’d have in a future none of us thought we’d be alive for.”

[freedom-of-fanfic]

“the reason TERFs have been good at educating the young and queer people haven’t is, in the 80s and 90s the leading lights of TERFdom got tenured university positions, and the leading lights of queerdom died of AIDS.”

thank you for giving me a good reason to finish my dissertation and try to make it in the academy

[brs-love]

Wait, idk LGBTQ+ history, but they died of AIDS cause, what, hospitals refused to treat them or…?

[star-anise]

Oh heck yeah.

When an epidemic happens, public health agencies spend millions of dollars trying to understand what happens: Why are people sick or dying? What caused it? Who else is at risk? Government health departments like the Centres for Disease control and private companies both invest hundreds of millions of dollars into preserving public health. This happened in 1977, when military veterans who all attended the same gathering began to get sick with a strange type of pneumonia, with 182 cases and 29 dead, and the CDC traced the illness to a bacterium distributed by the air conditioning system of a hotel they all stayed at, and in 1982, when seven people died of tainted Tylenol, and pharmaceutical companies changed the entire way their products were made and packaged to prevent more deaths.

Meanwhile, the AIDS epidemic took six years to be recognized by the CDC (1975-1981) because at first the only people dying were intravenous drug users, which is to say, heroin addicts; when it was recognized, President Reagan’s government pressured the CDC to spend as little time and money on AIDS as possible, because they literally didn’t think gay lives were important. So yes, hospitals refused to treat them and medical staff treated them as disgusting people who deserved to die, but also, there was very little funding for scientists to understand what this disease was, what caused it, where it came from, how it spread, or how to stop it. The LGBTQ+ community had to organize and fight to get hospitals to treat them, to fund scientific research, to be legally allowed to buy the drugs that kept them alive, and to have access to treatment. An effective treatment for AIDS wasn’t found until 1995.

And it’s ongoing; a lot of the difficulty of fighting AIDS in Africa is that it’s seen as “the gay disease” (and thanks to European colonialism, even African societies that used to be okay with us were taught to think LGBTQ+ people are bad).  Even now that we have medications that can treat or prevent AIDS, they’re incredibly expensive and hard to get; in 2015, New York businessman Martin Shkreli acquired the exclusive right to make a drug that treats an AIDS-related disease, and raised its price from $13.50 a pill to $750 a pill. 

Here’s one history on what it was like to have and fight AIDS, one history on how politicians responded to the epidemic, and if you can get a copy of the documentary How to Survive a Plague, it’s a good introduction, because it’s about how AIDS patients had to fight for their lives. A lot of these histories are imperfect and incomplete, because privilege played a big part in whose lives and deaths were seen as important–Poor people, people of colour, trans people, and drug addicts were less likely to be able to afford or access medical care, and more likely to die without being remembered; histories often tend to focus on straight people who got AIDS through no fault of their own, and then white cis gay men who seem more “respectable” and “relatable”.  

I mean, people who will talk about how homophobia led to neglect of AIDS still find ways not to mention that AIDS isn’t just sexually transmitted; it’s hugely a disease of drug addicts, because sharing needles is a huge way the disease spreads. But because society always thinks, oh, drug addicts are bad and disgusting people and of course criminals, that often gets neatly dropped from the histories, and it’s still hard to get people to agree to things that keep drug addicts alive, like needle exchanges and supervised injection sites. But if you want my rant about how the war on drugs is bullshit used to control poor people and people of colour, and drugs shouldn’t be criminalized, you’ll have to ask for that separately.

[elfwreck]

They died of AIDS because

Hospitals refused to treat them, and when they did get admitted, treated them like dirt so their will-to-live was eroded - refused to let long-term partners visit them, staff acted like they were disgusting nuisances, etc.

Very little funding was put into finding causes or cures - AIDS was considered “god’s punishment” for immoral behavior by a whole lot of people.

Once causes were understood (effective treatments were a long ways off), information about those causes weren’t widely shared - because it was a “sex disease” (it wasn’t) and because a huge number of the victims were gay or needle-drug users, and the people in charge of disease prevention (or in charge of funding) didn’t care if all of those people just died.

Not until it started hitting straight people and superstar celebrities (e.g. Rock Hudson) did it get treated as A Real Problem - and by that time, it had reached terrifying epidemic conditions.

Picture from 1993:

We lost basically a whole generation of the queer community.

[psychoactive-teratogen]

As a current AIDS survivor, this is really important information. I was diagnosed not only HIV positive in 2014, but I had already progressed to an AIDS diagnosis. Knowing how far we’ve come with treatment and what the trials and tribulations of those who came before cannot and must not ever be forgotten. Awareness is the number one goal. I often speak to the microbiology students at my university to explain what it’s like to live with, how the medications work, side effects, how it’s affected my daily life, and just raise general awareness.

Before my diagnosis, I, like many others, was clueless to how far treatment has come. I was still under the belief my diagnosis was a death sentence. Moving forward, even if only one person hears my story, that’s one more person that’s educated and can raise awareness.

I believe it’s time for us as a society to start better education of this disease. The vast majority of the people I’ve spoken to are receptive to the knowledge of my status, and I’ve received lots of support from loved ones, friends, and total strangers. It’s time to beat the stigma.

[smallswingshoes]

This is slightly off-point, but as for the cost, I wanted to mention that some pharmacies have specialties that let them get special coupons/programs and stuff to save money.

A bottle of Truvada (a month supply commonly used for treating this) is at least $3,000 out of pocket and insurance doesn’t usually take a lot off of that. But the pharmacy I work at is an HIV specialty and we always get te price down to less than $10.

If you’re on HIV meds and they’re ludicrously expensive, ask your local pharmacy manager if there are any local HIV specialty pharmacies that they know of. They might be able to help.

[mycroftrh]

I think it’s important to emphasize that, while the diagnosis is no longer a death sentence, it is also true that people dying of AIDS because of homophobia is not history only.

My brother’s first boyfriend was kicked out/disowned by his parents for being queer, got AIDS, couldn’t afford treatment, and died.  He died in 2019, at around 20 years old.

In 2019.

Barely more than a kid.

Of a treatable disease.

Because of homophobia.

Because his parents cared more about not being associated with a queer person than they cared about their son’s literal life.

AIDS is not just history.  Neither is homophobia.

[madgastronomer]

Back to history: When AIDS patients held die-ins, they went to hospitals, lay down in front of them, and literally waited to die.

[specificfuckery]

[carnivalseb]

If you’re young & either queer or queer-adjacent, think about the number of people out of the closet you know your own age & think about how many you know your parents age. They’re not stamping us out of the mould any quicker these days than in the ‘60s, except in lockstep with population growth. I think, growing up, my picture of relative numbers of queer people & straights was unavoidably impacted by the number of empty seats at our table. That might be the case for you too. The number of elders you never got to meet.

Remember this when people talk about how small the LGBTQIA+ population is. That it’s “such a small percentage of the population to be catered too”. Remember this and tell them, “that’s because homophobia killed them”.

[purplepints]

This picture of the San Francisco Gay Men’s Chorus is often included with the “The men facing the camera/in white are the surviving members” but it leaves out something extremely important:

By 1996, all of the men facing the camera in the picture were dead.

Every.

Single.

One.

Eric Luse, the photographer, said this in a more recent article :

By 1996 the obituary list was almost 50 names longer than the entire choral roster. All of the positions plus four dozen more, gone. The obituary list continued to grow, too. The cost and availability of any treatments in the mid-late 90s continued to cause more death.

If you were queer in the 80s and 90s, you knew someone who had it and knew people who died from it. Period. I cannot stress the impact this had on the queer community and those of us who were alive at the time, and I know the scope of it is almost unimaginable to younger people today.

By 1996, there were NO surviving original members of the SFGMC. You need to know that when you see this picture.

Dozens of the men turned away from the camera here in this shot were also dead alongside the men in white. It is vital to recognize that.

There is no hope in this picture, it isn’t a display of a lucky few who avoided death. There is no “Well at least some of them survived” because no, they didn’t, and this time was so fucking bleak and painful it’s astonishing that anything got done. They’d march one week and die the next. Their friends would bury them in the morning and march in the afternoon. This went on for years.

Bigotry and hate and ignorance killed generations of queer people. It speaks to the sheer resilience of the community that from that all but state-sanctioned genocide, we have gained so much ground in the last few decades. Much is owed to the people who refused to stay quiet and who fought even on their deathbeds, so please consider learning about LGBTQ+ history as a way of continuing the fight and showing respect. Many of us coming of age at that time didn’t have that opportunity, and made it a point to learn and get involved as teenagers and young adults because we saw what we were losing.

Sing for two.

[mg-dl]

My fave part of this post is the repeated usage of the word “queer”. In a discussion about the hatred of LGBT people and how they were left to die by the government, it’s always a great idea to call them all a slur. Can you switch it up a bit and use “fag” next time?

[star-anise]

There’s a really obvious reason why we’re using “queer”.

When talking about LGBTQ+ history, often we have to be really careful with the language we use, because how we understand things now is not how the people we’re talking about understood themselves at the time. We end up using phrases like, “People who we would now understand as gay or lesbian” or “experiences which modern transgender people often identify with”.

In this case? It’s because that’s the word they used.

(Many of them also used the words “fag” or “dyke”, but “queer” is more inclusive.)

When I talk about “the leading lights of queerness” I mean Queer Nation. I mean the people who contributed to Queer Theory. I mean people who deliberately chose to use that word. I mean me and my ex-girlfriend. We exist.

During the AIDS crisis especially, homophobia was so bad that a lot of people didn’t want to be known by any word associated with the gay community: Not gay, not homosexual, not queer, not anything. Epidemiologists had to create the category of “men who have sex with men” because there was literally no existing term that didn’t carry the weight of a slur. The purpose of using the word “queer” was for people to say, “Let’s stop running from the things society is calling us; let’s pick up the weapons they’ve hurled at us and start hurling them back. There is no level of socially acceptable we can be that will make them suddenly decide our lives matter. We’re here, we’re queer, get used to it.”  It meant very specifically embracing and defending their/our marginalized position.

Every word we’ve ever been known by has been a slur. We all have our own histories and flinch reactions. I grew up with “gay” and “lezzo” being used really hatefully around me, as well as “queer” and “dyke” and “fag”, and I have different comfort levels with all those different words.

/shrug emoji You can dislike the word all you like and ask that it not be used for you. But historically and today, a lot of us do use it for ourselves, and we constitute “the queer community” or “queerdom”. Which we don’t think is a bad thing. If you don’t want to join us, fine, but that doesn’t make us stop existing, and any other word you can call us would also be a slur, because our community is predicated on saying, “We are that thing you’re so afraid of. Get used to it.”

[poztatt]

Speaking to the MSM point in the final addition.  Functionally a problem in trying to get studies going in the 80s and 90s that tried to figure out what in hell was going on was trying to get people into studies.  To answer questions.  Because you could lose your job, home, family, life if you incautiously admitted to being gay/queer/homosexual.  So among the men who were terrified of being on any kind of record as being gay because they self identified that way there were a whole host of people who didn’t actually see themselves as gay. Because it was just not something they could accept. But what always fascinated me was in the studies we did (I’m out of Vancouver, BC and have been part of an HIV/AIDS research organization since 96, for context) at one point we had a staunch group of individuals who were predominantly immigrants from other cultures who culturally had definitions of behaviour that didn’t align with North American behaviour labels. Insertive partners in some cultures are not gay as they were/are not mechanically different from “the normal male” sexual actor.  Receptive partners were.  Basically the thinking in some people’s minds is that women=receptive and insertive=male.  And if your sex didn’t match the sexual position…  Now. To be clear.  I’m not saying these things as a point of “this is what I think”.  This is what had been captured in interviews and conversations and studies over the years.  Some people aligned themselves these ways.  I’ve always seen it as part and parcel of the gender issues and misogyny that we’re still, 30 years later, arguing about.  As to the rest… I’ve written about this (and lectured and written and lectured and written) before.  In this particular thread even.  It will never stop amazing me the revisionism that happens around queer.  Those of us who were in large protesting crowds, remembering “We’re Here! We’re Queer! Get Over It!” being told “it’s never not been a slur/been used by us” just…wigs me out. What I remember?  What I remember is my now husband and then friends (and myself) knowing that the straight culture we lived in equated holding hands with a sexual act.  Holding hands in public as queer people was fucking.  It was viewed the same.  Today that seems ludicrous but it’s how it was.  Our being was an act of aggression, of sexual acts, of a political agenda.  A spiritual and moral violence. And we knew. Like everyone has known: the fear behind that was potentially a tool we could use. So standing in rooms with scientists and physicians who had decided we were dirty queers with sick fucking lives and minds, prone to acts of perversion and inhumanity?  We wore shirts with QUEER in big bold letters so when they talked to us, met our eyes, it was over the words they were whispering in their heads.  It was under the leather we wore, the sexualized outfits with no room for misinterpretation about FUCKING.  And SEX.  And in these meetings discussing policy and funding and science we stood there in our entirety on display, forcing them to look at us in all of this - to see we felt all of it was normal and not something we were ashamed of? How could the idea that sex was enjoyable be a topic of debate that had implications on our fundamental humanity?  Apparently people did, and do, think so. This all put us in positions of power in those negotiations.  Negotiations, do not ever forget often that were about whether or not their largess would allow us to live.  So while people were embarrassed to be confronted with their prejudices that they were comfortable expressing out of sight and hearing of us, we stood and HELD their eyes and their attention. Queer fuckers.  Fags and perverts.  And we refused to fucking die quietly. (shrug) So to those that dislike the word, outside of the fire of my own history I will calmly discuss it and follow their instructions not to call them queer.  But if you step into my history, into the graveyard of the men and women I know who are now gone due to apathy and disinterest and hatred and homophobia… you’re going to hear queer.  In great swelling chants from the throats of thousands of people in the streets.  You can like it or hate it but you cannot argue it’s existence and the lever it was that shifted the world we’re arguing in the middle of, today.

[prismatic-bell]

If you want to know how all-encompassing AIDS was of queer culture, I’d like to direct you to RENT—not the movie or modern performances, but the original. Jon Larson was cishet, but he was also writing about his own friends and community.

You will note that literally half the cast has AIDS. If you listen to the original workshop, it’s THREE QUARTERS—Maureen is positive and Mark refuses to get tested out of fear because he’s showing symptoms.

Next: the Life Support scene. First of all, it was based on a real group called Friends In Deed. Second of all, something often omitted but still sometimes honored:

The intention was for the names of the characters to change for every actor, sometimes more than once in a run (literally up to and including “every performance”). That’s why none of the characters’ names are mentioned in the scene except by the actor with that name. Each actor was given the opportunity to name their character after someone they had known who died of AIDS, and the “default” names were all members of Friends In Deed.

So when you listen to that song, remember: every person named in it is dead. Of AIDS. It is entirely possible this is their only memorial. And when you hear a different name, that, too, is in memorial. Of a person who died because the whole world looked away.

I would also advise young members of the community to look up the AIDS memorial quilt. It’s been digitized and can be viewed online. Each panel is 6’x3’, roughly the size of a grave. The quilt weighs 54 tons and is the largest folk art object in the world; in its entirety it requires a space the size of the Mall in Washington, DC to display. (For non-Americans and/or people who are unsure: you know the pictures of presidential inaugurations, or MLK’s I Have A Dream speech? That’s the Washington Mall.)

Every single panel in the quilt represents a dead person. Some represent more than one dead person, because people would make a panel in memoriam and then they, too, would die of AIDS, and there would be nobody left to make a panel for them.

When you turn your back on “queer,” when you turn your back on “weird gays,” when you turn your back on trans people, this is what you are turning your back on. Fifty-four tons of nothing but names of the dead.

And I assure you, the people who hate us enough to have made the quilt necessary? They hate you too. You’re not special just because you’re the “right kind” of LGBTQIA.

[mckitterick]

AIDS Memorial Quilt:

History

[kodyshivblog]

I don't often do reblogs, but this is a great (series of) post(s) about the history of HIV/AIDs and how people were treated back then (and still are now.)

[kodyshivblog]

What NOT to say/do when applying for disability

Hi everyone,

As someone who once tried to get disability (and navigated the system for over five years as a result as a result,) I thought I'd take a moment to write this post about some things that I learned you shouldn't do when applying for the process.

I should note that this post isn't designed to show you how to scam the industry (the court requires documentation of notable disabilities that prevent you from working.) Rather, it is designed to help people navigate the process, which has undoubtedly been abused and oftentimes suffers from judges whose jobs is to completely rule out your disability.

Some backstory: I originally applied for disability based on both my HIV status, the fatigue that accompanies it, and the anxiety that accompanies my myriad of mental health diagnoses. At the time, I was very, very unwell mentally, and while I did not receive disability in the end (and feel I do not need it at this time,) I learned some things that you should not do.

So, with that being said:

Do not downplay your symptoms to your doctor. Given that your doctor is the one collecting information on your case, it is imperative that you do not, in any way, shape or form, say anything that would get put in your record that a judge can exploit. This could include things like "I don't always suffer this badly" or "I have good days." This could also include your severity of your symptoms, or the frequency of them. In that sense, you should also:

Never, when a doctor is asking how you're doing, say, "I'm fine / I'm doing okay." This is asked because it gets inserted into your chart as part of your "patient history/medical profile." How this is worded exactly depends on your doctor I imagine, but the judge who denied my disability case based a lot of their determination on the fact that I told the doctor(s) I was seeing that I was "doing okay." The judge even specified how many times I reported this by number, and claimed that, because I often said I was "doing okay" or "fine," that I had more good days than bad. With that said, you should also:

Never go into the disability process alone. Many disability lawyers work on the expectation that if you get paid, they get paid, and oftentimes will work with you on this arrangement. The paperwork to apply can be incredibly overwhelming, as can the process of gathering it. A legal team can help assist you in this process.

Never see a judge on your own. I had my lawyer/representative present with me, and they were able to argue my case by laws surrounding the way people are expected to behave in certain instances in the work environment.

Though I did not receive disability in the end (nor do I feel I will need it for quite some time,) I thought these tips would be beneficial to those of you who are applying for disability.

[kodyshivblog]

My first date in years (and the STD conversation that took place during it

So... I went out on a real, honest to god "date" with a guy tonight.

(And before anyone asks: yes, I had a good time.)

However, he did note, at one point during our three-hour long outing, that, though he had been looking at my profile previously, he was initially slightly hesitant to meet me due to the fact that I'm both herpes and HIV-positive, and I list that in my profile. He did admit that this was in part due to his roommate wanting him to "be careful." He said he later reevaluated her words and that's why he responded when I messaged him.

Which leads me to a realization:

I was more "desirable," in a sense, pre-Herpes diagnosis than I have been post (and that was even with the HIV diagnosis.)

Which kind of baffles me -- because in many senses and in most cases, herpes is generally very much a "non-issue." Most of the population has one variation of it, and a good deal of people never know (as they do not have symptoms.)

Once upon a time, I used to think the HIV was more of a deterrent for people; and when I was originally diagnosed, I feared that I was going to be alone. I had the same sort of fear once I realized I had Herpes, but it was amplified due to the overwhelming stigma surrounding it (which is in part due to a huge stigmatized campaign, if you dig into the research of the history of the disease.)

Now... I will never, so long as I am dating, remove the "HIV and Herpes-Positive" notice from my dating profile, because I feel being upfront with people is more appropriate than leading them into a separate direction (and then dealing with the disappointment after they ultimately ghost or reject me.) Hearing what he said, though, it really does make me wonder how many people would just pass me by as a result.

In the end, I did enjoy myself; and as of just dropping him off and messaging him, he said he did want to meet up again. So, there's that at least.

[kodyshivblog]

Eating Disorder woes

This is going to be a long post, wherein I discuss my eating disorder. If that’s triggering, you might want to avoid this.

Anyhow—

It’s no secret that I deal with weight-related anxiety. However—it wasn’t until last year, when I began speaking with a nutritionist who specialized in disordered eating, that I was officially diagnosed.

My disorder—which is technically considered “EDNOS,” or, Eating Disorder Not Otherwise Specified—is a dual-combination issue, wherein I do one of two things:

I either A] binge eat or B] resort to severe limiting or starvation. I have never purged (though not for a lack of trying,) nor have I ever dropped to a dangerous weight as a result of my disorder. Most of my weight issues lie in the fact that I gain weight due to obsessive-compulsive eating.

Unfortunately, this isn’t a recent ordeal. I’ve been dealing with it for a long time (nearly fifteen years now.)

When I was a child, I underwent a procedure (a cyst removal, caused by an allergic reaction to penicillin) that left me with a drainage tube in my side. Given that I was very active up until that point, it was a deep blow to have dealt to me, especially since I had to keep the drainage tube in my side for a good three weeks. After it was taken out, I was left with weakness in that side for quite some time.

Which led to weight gain. A lot of it.

Unfortunately, I did not really notice the weight as it piled on. Due to my own anxieties surrounding my bullying, I brushed off casual comments from peers (and even some family members) as just that: ‘comments.’ It wouldn’t be until I reached a weight close to 250 pounds in my teens, and someone commented on my appearance online, that my disordered eating started.

When I began to suffer the throes of starvation “dieting” at the age of fifteen, I was suppressing my caloric intake to 1000 calories or less a day. Over a series of several months, I dropped about seventy pounds, and maintained a weight of about 180 to 170 pounds for years.

However, that changed when I turned eighteen, and I started anti-anxiety and antidepressant medications.

(I should note that, while doctors will claim that the medicine alone does not cause weight gain, the increased appetite as a side effect does contribute to that.)

My weight has steadily climbed for the past fifteen years—going up sometimes, down at others, many times due to the stress I was under, medically or otherwise. When I lived in Fort Worth between the years of 2015 and 2018, I hit a point where my HIV status was affecting my ability to properly eat during the year I had a day job. I literally could not eat before or during shifts (less I suffer stomach issues.) This, I feel, kickstarted the disordered eating.

And led to my complex binge eating disorder, and the obsessive-compulsive eating along with it.

I should note that, as of now, my nutritionist and I have essentially stopped the binge eating. Regardless, it has not stopped the obsessive-compulsiveness surrounding food.

I am currently 236 pounds—the second heaviest weight I’ve been at in my life.

Today, after making the decision to combat the obsessive compulsive eating, I was unintentionally triggered by an image of myself from several months ago, which caused my eating disorder anxiety to flare up. I knew, at the point that image was taken, that I weighed less than I do now. Hence the struggles I’ve been suffering tonight.

I should note that I have a plan to get the weight down. Due to some other medical issues (AKA: my stressed back muscles from a fall I endured in February, and an open wound from a cyst removal just recently,) I’ve been moving around less. BUT, I am healing, and I am working toward a goal to lose a substantial amount of weight.

I know this post wasn’t exactly poetic, but, there it is. I wanted to chronicle these feelings, and this journey, as a sort of ‘accountability’ post.

My goal, at present, is to be comfortable with my body when I turn 30 in April next year.

[kodyshivblog]

A reminder to those who suffer from PTSD:

It is not someone else's job to heal you.

It is also not your job to heal someone else.

You are responsible for your own actions, just as other people who suffer from PTSD are responsible for theirs.

[kodyshivblog]

An article from Buzzfeed touched on an issue of a rapper (who goes under the name DaBaby) who made some very ignorant, serophobic comments regarding gay men with HIV.

As a (surprise) gay man living with HIV, I want to say a few things;

1. HIV is NOT a "gay disease." ANYONE can get HIV, no matter your age, gender, sexuality, how many times you've had sex, or how you have sex.

2. Those who seek antiretroviral treatment to combat the viral load of HIV in their body often achieve undetectable status, and live long, healthy lives. This also leads into point number three, which is:

3. "Undetectable = Untransimittable" (or the "U=U campaign") means that people who seek medical therapy, and whose bodies respond effectively to it, cannot pass on HIV to their partners ("Undetectable" means that the virus is nearly impossible to detect in millimeters of blood.) Whereas a freshly infected person may have millions upon millions of virus in a millimeter of blood (and is super contagious to others as a result,) undetectable people who have undetectable levels of HIV in their blood don't pass it on. This also leads into point 4, which is:

4. While there is technically virus in your blood when you are undetectable, years-long studies with myriads of different types of couples have shown that undetectable people cannot pass the virus on to others. The virus is simply too weak at that stage to reinfect other people.

This type of misinformation negatively impacts minority communities, and creates further stigma surrounding what it is to have HIV in the 21rst century.

HIV, while scary in concept, is no longer a death sentence, so long as you adhere to prescription therapy. I've been undetectable for nearly seven years now. That's the power of modern medication.

[kodyshivblog]

Apologies for not updating

It's been a while, and I wanted to update y'all real quickly:

After getting on Dovato briefly and having it screw with my mood in the worst way possible, I returned to the Descovy/Tivicay combination I've been on for years. Thankfully, I feel mostly okay physically. I'm just trying to treat my body better with additional prescribed medications.

So... yeah. Other than that, not too much has been going on (nothing that would be beneficial to write about, anyway.)

[kodyshivblog]

Medication change + Update

So... just got off the Zoom call with my HIV doctor.

She IS GOING to switch my HIV medicine. HOWEVER, she warns that if I start experiencing any mental health symptoms (such as suicidal thoughts, anxiety, mania, etc.) that I'm to stop it immediately. Dovoto (the medication) can do this in some mental health patients, so she wants to be careful.

Regarding the stomach issues I've been having, she said that, although the medication (and the virus itself) can cause stomach problems, she is leaning toward one of two scenarios:

- That it is my Bupropion (which is one of my mental health meds,) which can cause stomach issues

or

- That my stomach flora has been wrecked because of the antibiotics I've been consistently on for my acne.

So... I'm going to rule out the antibiotic component by picking up some probiotics later today (when I go to get the new HIV medication) and stopping the antibiotics to see how that works.

I feel REALLY GOOD on my current mental health meds, so rebalancing them would be horrible. 🙁

Here's hoping that this works out! This new HIV medication would be better on my body, so that's always a plus.

[kodyshivblog]

Hi everyone

I hope you're doing well, and staying healthy, and surviving this pandemic. It didn't occur to me until just tonight that I haven't written anything on here since before the pandemic began.

Anyhow --

I've managed to secure both of my COVID-19 vaccines (Pfizer,) and am doing okay for the most part. Still in college, still working toward my BA, stuff like that.

I just wanted to check in.

Hope y'all are doing okay.

[kodyshivblog]

Herpes Stigma

A quick sex-ed lesson (since I saw this come up on my Facebook feed):

Most of the population has herpes -- and for most people, it's not a big deal. Most who have it are completely asymptomatic, and doctors rarely test for it.

Why?

There's a history rooted in it. 

It goes back to a singular article that was published (in a non-medical journal) about herpes being the "most infectious, incurable disease," which sparked panic throughout modern American culture and continues to do damage to this day. This, combined with the fact that it doesn't affect most people adversely, makes it so doctors rarely test for it. It's not even included in most STD screenings because of that.

Fact of the matter is:

- A good deal of people have oral herpes (about 65% in America.)

- 1 out of 6 people have genital herpes (in America) and rarely know it.

- Both forms are extremely contagious.

- The stigma of herpes is far more deadly (in most cases) than the actual virus is.

So... yeah. 

Just thought I'd pass this information along, because as someone who DOES have the virus (both variations of it, which was likely a comorbidity of my bipolar disorder,) it's rather sad to see people joke about it like it's a "dirty thing," when in reality their joking about contributes to the stigma. 

[kodyshivblog]

A Psych Health Update

So... after talking with my primary care following my discussion with a telehealth psychiatrist/psychology, I came away with a few things

: 1. My doctor believes my eating disorder issues and weight gain may be in part caused by my Citalopram, which he stated has a weight gain effect.

2. He tends to not think it's an obsessive-compulsive issue with food due to the fact that I've managed to maintain a somewhat-stable weight (and that I'm not, as he said, 5- or 600 pounds.)

3. He thinks my telehealth psychiatrist may have been "taking the call to take the call" due to the fact that they personally didn't prescribe anything. He said the medication that the psychiatrist recommended wasn't a controlled substance (Topamax.)

and finally:

4. He recommended I seek out the local behavioral health center for help with adjusting my psych medication (from Citalopram to Buproprion.)  

Naturally, when I called the psych center, they said they weren't taking new clients due to the pandemic, and that even though I had been there about two years ago, they'd have to admit me as a new client.

So... yeah. Frustrations slightly abound here, but I'm trying to make a game plan and see what I can do on my own.

[kodyshivblog]

Five years ago today, I found out I was HIV-Positive

Five years ago today, I was sitting in a gay youth center in Austin, Texas awaiting the result of my second HIV rapid quick test, which would determine whether or not the "False-positive" on the first one had indeed been false.

“How are you feeling?” the medical director had asked.

“Okay,” I’d said. I wasn’t scared—that much was already for certain—but that was because my Post-Traumatic Stress Disorder from past childhood events was causing to disassociate. Surely I couldn’t have contracted HIV? Could I? It took exactly fifteen minutes for the test to finish.

By the time it did, it confirmed my worst fear:

I was HIV-Positive.

The medical director asked once again how I was feeling as she asked me to sign some paperwork that would report my result to the local infectious disease unit. I, again, said, “I think I’m okay” because at that point, I was in a state of disbelief. I couldn’t believe it—absolutely, could not believe it. I, Kody, was HIV-Positive, at only 23 years of age.

By the time I left and drove myself home, I was convinced that the result was wrong; and, because of that, asked my roommates to take me to the emergency room, wherein I was made to lie down in a back room while they let my blood pressure drop from its astronomical heights. They couldn’t do anything, they said. Once the virus can be detected in your system via rapid quick testing, you have the disease. There’s nothing you can do about it.

For the next several weeks, I underwent numerous tests, interviews, and talks with state representatives and social workers about what would happen next. “Everything will be fine,” they’d said. “You’ll get into treatment by January.”

And that, above all else, was terrifying—knowing, at this point, that I was a raging body of infection, and that I could not do anything to help prevent the infection within me from ravaging my body until nearly sixty days later.

I spent the next two months loathing myself and my decisions. Hyper sexuality, caused by my Bipolar Disorder, was the reason why I became infected. As a result, I felt it was my fault that I contracted this disease. I cried for more than three hours the first night because I knew my future would change, likely for what I believed was the worst. I felt it was my fault, regardless of the fact that the person I contracted it from likely did not know they themselves had it, and I blamed my state of mind for allowing myself to do this, even though I was, and still am, mentally unwell at times.

Eventually, I began to realize that I could not stew in my emotions any more. I had to be strong.

Five years later, I am stronger than I ever thought possible.

Yes, I have an as-of-now incurable disease. Yes, I take thousands of dollars worth of medication a month for my condition. And yes, it’s changed my life. But as I said before: I am stronger than I was ever previously.

My life has changed so much over these past five years. From being denied disability due to my severe mental illness, to eventually being forced to get and maintain a job, to two moves throughout the past five years throughout Texas, to going to school to pursue my bachelors in creative writing and English, I have realized that things in your life are not stagnant—and that, as time goes on, so, too, do you.

In the end, I am a happier person, and a stronger one, because of battling this virus.

[kodyshivblog]

Went to my doctor for my five-month checkup today

To start:

- I blipped. AKA: I'm detectable again (per my last blood draw from a week or so ago.) This means that the virus is at a level which machines can detect (this means that there's 100 counts per ML. This means I'm technically infectious, though minorly.) Undetectable, in which levels are below 20, means that I can't infect anyone (at least, the chances are, like, .01 percent from the CDC reports.)

She also:

- Gave me some new stomach medication, which is from a  tree in Peru, which she says should help my symptoms.

She also said that I:

- Need to see about a CT scan for my nerve pain, to see if I have a compressed disc. (Ugh to that.)

and

- She took one look at my septum and said, 'That'll likely need surgery.' (Note that my septum has been deviated for years.)

So, yeah. A visit to primary care is in order for referrals, but there's my update!

[kodyshivblog]

Going to a psychiatrist next Wednesday

To get my binge eating issues under control.

According to my iPhone, I’ve gained about 16 pounds since February.  I’m presently somewhere around 230 pounds (but may be higher up.)

I mean, I manage to hold myself well enough (years of training to ‘suck in the fat’ has given me a decent posture,) but I’m still only 5′6″, and unfortunately, I’m starting to feel the effects of it, especially on my joints and in my regular everyday life.

So... next Wednesday, I go to a psychiatrist who specializes in eating disorders. I’m hoping to be put on medication to curb my hunger issues and then start some kind of diet plan to reduce and lower my weight.

I’m not sure how I’m going to do it yet. Trying to go full-blown keto sometime late last year or early this year seemed to do something to my psyche. I’m not sure if it was my body going OH MY GOD HE’S GOING TO START STARVING HIMSELF AGAIN like I did in my teens (to lose about fifty to sixty pounds through strict calorie restriction) or what, but I’m guessing that might have unrooted some deeply-ingrained psychological/physiological responses from my past.

I’ll be sure to let you all know what’s going on when it happens. Unfortunately, eating issues are another thing I deal with, and have been for the past year or so.

[kodyshivblog]

Was I raped? Some experts argue I was.

To begin, let me give you some backstory:

Before I contracted the Human Immunodeficiency Virus (otherwise known as HIV,) 99% of my sexual activities were done safely. Given that I am Bipolar, and as such suffer from hyper sexuality side effects as a result of my illness, I did engage in behaviors that put me at-risk for certain infections. It was not, however, until 2014, that I experienced what has now been classified as “stealthing.”

What is “stealthing?”

“Stealthing,” according to an article from loveisrespect.org is, simply put: the act of removing the condom without your partner’s consent.

In short: I suspected the partner I had chosen to have consensual sex with had possibly removed the condom shortly after we finished intercourse. At the time, I brushed it off due to paranoia. Hindsight, though, leads me to believe two things: the first being that I was likely not being paranoid, and the second in that I started experiencing flu-like symptoms not long after the event.

[For anyone who isn’t aware: people who are seroconverting, or becoming infected with the HIV virus, primarily suffer from flu-like symptoms as their body is attempting and failing to fight off the virus.]

I have struggled with guilt surrounding my HIV infection for years. I used to think, WHY DID I LET THIS HAPPEN? I also thought, WHAT COULD I HAVE DONE DIFFERENTLY?

After years of reflection, it turns out that I may not have been able to do ANYTHING about this at all. Stealthing is, in itself, a conscious act. It isn’t a condom breaking or tearing. It isn’t the result of the condom having degraded due to existing past its expiration date. It’s the result of someone ACTIVELY, PHYSICALLY, and MALICIOUSLY removing a condom.

Could I have decided NOT to have had sex with that partner? Of course. Does the fact that I met him online mean I DID NOT deserve respect and decency for my health and person? Absolutely not.

Regardless of whom you have sex with or how you have that sex, you deserve the respect, kindness, and consent of your partners, no matter who they are, who you are, or how you meet.