kodyshivblog

[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.

[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.)

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.”

[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.