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From Day One to Today: Becoming a PLHIV

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 By: Jonathon Arntson

Hello there. I’m Jonathon. I work at UNIFIED –  HIV Health and Beyond as the Health Education Coordinator. Three plus years ago I became HIV+. Since then I’ve experienced my ups and downs, but I keep myself getting through it with support from friends and family, helping others where I can, and maintaining a sense of humor no matter what. One way in which I am doing that is to share my experiences (adventures?) as a person living with HIV (PLHIV) who also works in the field. You can look forward to me sharing those with you a couple times a month. It’s my hope that my writings will prompt us to engage in progressive discussions about the state of HIV today. I also hope that anyone reading will be inspired to share their own stories. I shared my first day story on thebody.com. You can view it here and you will see snippets peppered into my ongoing posts. 

After I tested positive, I received the “first day” welcome kit of a blood draw, pamphlets, referrals, and you-must-use-condoms-now finger-waggings . Then, I arrived home to begin coping. I felt like I was beginning the same transition you witness in old vampire and werewolf films.

I noticed little changes here and there. After a while, the changes felt deeper like every bug bite or blood cell had mutated into weird little monsters. After a while, I didn’t even realize I had a fever until it began dissipating. I fell asleep and woke up a few hours later. But instead of waking up with powers or sharper teeth or fur all over, I felt exactly the same. And the fever had been a result of emotions. My blood felt the same inside me, and I would soon learn it looks the same. I was beginning the (still ongoing) grieving process.

Although I was still reeling from the werewolf episode, the day after my confirmatory result was also my first day back at work. At the time, I was working at a housewares store–the brand at which I had worked for five intermittent years. When I started that night’s shift, I’d mostly forgotten about my transition into a mutant. As happened too often at this job, I cut my finger on something. Getting cut is inevitable at this home store. Between glass, cardboard, splintered wood, and unloading trucks, getting cut is inevitable at this homestore; I endured hands covered in bandages on the weekly. I did not see it coming but this first day as a new creature gave me a crash-course in accepting myself as-is.

As soon as I cut my finger on a broken vase that a customer left sitting on a shelf, I was transported to a Tarantino film.

Blood sprayed from my hand, and then from my fingertips. Each blink changed my surroundings between neon colors like I was in an early iPod commercial-turned-horror film. I rushed to the restroom, locked myself in, grabbed a wad of paper towel, and crouched into a vertical version of the fetal position. I stayed in the restroom for half an hour as I worried about what I should do. I knew I needed to rinse off my hand but I was afraid to get blood on the faucet handles.

I finally overcame my dread and turned on the water. Instead of sticking my now mostly dried, bloody hand into the water, I plunged my face into the cascade and washed away the irrationality. I cleaned my hands, cleaned the minimal blood off the sink, and left the restroom to dress the wound as though nothing was out of the ordinary. To this day, I still have a small panicked feeling when I see my blood. This feeling diminishes the more I learn about HIV and how being undetectable equals untransmittable.

Speaking of undetectable, I will be sharing many posts grappling with the drama and trauma of being a patient and a case worker/educator.

Months after testing reactive, I volunteered at UNIFIED (formerly AIDS Partnership Michigan). I didn’t know how to talk about HIV or what I was going through. It was easier to say I was “fine” and gulp than to own up to my not knowing what the hell to do or say.

But I showed up, answered calls on the Michigan HIV/STD Hotline (800-872-2437), and covered the front desk. My time volunteering allowed me to hone my communication skills while building confidence in the facts surrounding HIV and how I engaged with them.

I then gained knowledge and confidence working on and off with CARES of SW Michigan and Mr. Friendly to co-facilitate weekend camps for positive men. We learned about disclosure, healthy relationships, and the ongoing science behind HIV. This involvement put me right in the middle of being a person with HIV as well as a counselor for my peers.

I spent my first year employed with UNIFIED as a Linkage to Care Specialist. I worked with newly diagnosed individuals, those who had fallen out of care, and those who had recently relocated to Metro-Detroit. I went through Linkage to Care as a client and when I had the opportunity to switch sides and become the specialist, I was anxious and excited. I had never had a “real job”  before. Taking that opportunity lead me to an even better one, and two months ago I became the Health Education Coordinator at UNIFIED. This position has me in charge of support and education groups, building and maintaining partnerships with peer AIDS service organizations (ASOs), medical clinics, and community agencies offering services to address needs well beyond HIV care.

Beside working at UNIFIED, I participate in panels and discussions as a PLHIV, work on the draft of an autobiography, and write letters to my legislators imploring them to support drastic augmentation to the Michigan HIV Disclosure Law. Lastly, I am working on a website that will offer a space for PLHIV and their loved ones to share their stories. This project has many logistics and barriers to deal with and I am moving very slowly. If you are inclined to help, I would never decline.

Thank you for reading and I look forward to offering you more insights and anecdotes about how I got to being more than just “fine.” Whew. It was really nice to write about myself without it being on a dating app.

Love, Jonathon

social media:

Facebook: jonathon.arntson

Instagram: @themanwiththemichigantattoo

Twitter: @monkeyboydet

Tobacco Reduction – What’s In A Quit Kit?

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By: Kayla Gamino (UNIFIED Tobacco Treatment Specialist)

An ample part of UNIFIED’s tobacco reduction program includes creating quit kits for clients.  During the initial assessment, we bring out the quit kit while discussing possible quit dates.  Each client accessing tobacco reduction services receives 1 quit kit for their time working with the tobacco treatment specialist.  Each quit kit includes: a journal, pens, candy/gum, educational tools, and fidget toys.

Journal- The journal is an especially important piece of the quit kit.  The journal is a good tool to help keep track of a person’s smoking habits prior to their quit date.  Many clients use it to write down when they have cravings, what they are doing when they have cravings, and how they are feeling when they have a craving.  This will help the tobacco treatment specialist and client to better come up with coping mechanisms and a quit plan together for when the client experiences cravings.  For example, if Mike records that he has a craving every time he is feeling bored then coming up with things for Mike to do while he is bored can help combat cravings.

Originally posted by gerimagsakay

Pens- The pens are good for when the client needs to journal.  We put 2-3 different colored pens in each quit kit to make it easier for the client to be able to journal. Pens can also act as a fidget toy.

Candy/Gum-  Each quit kit comes with a variety of candy.  We use Twizzlers, Life Savers, and mints normally.  The Twizzlers can help with the hand to mouth habit of smoking.  It is a similar shape to a cigarette.  The Life Savers, mints, and gum are good at combating the oral fixation that often comes with smokers.

Originally posted by fadedmapdots

Educational Tools-  In each quit kit, we put a pamphlet for the Michigan Tobacco Quit Line.  In the pamphlet, it gives little facts on how smoking affects the body as well as the number to the Quit Line for clients to utilize.  We also include a UNIFIED Tobacco Services palm card that has contact information and HIV and Tobacco use facts.  As an added bonus, we include the Michigan HIV/STD Hotline number.

Fidget Toys-  Each quit kit includes rubber bands that are used by switching wrists when a craving occurs.  It helps to keep the hands and mind busy.  Additionally, each client gets to choose another fidget toy.  We have two different options.  One is a bike chain fidget toy that is small enough to fit in a pants pocket.  The other is a Bendeez toy that can be molded into different shapes.  Both are used to help combat boredom and keep the hands and mind busy.

Originally posted by cracked

All of these items have gotten positive feedback from current tobacco clients.  If you are a current tobacco user and you think that a quit kit would be beneficial to your quit/reduction attempt, please contact UNIFIED- HIV Health and Beyond to meet with a Tobacco Treatment Specialist!

HIV IS NOT A CRIME – Michigan Lobby Day

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received_10153359466535938 By: Sidney Skipper

Sidney Skipper talks about his experiences at Michigan Lobby Day in Lansing.

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I’m in Lansing, Michigan at the State Capital Building, with officials from the Michigan Coalition for HIV Health and Safety (MCHHS), Kelly Doyle and Todd Heywood.  We’re joined by Teresa Perrin whose son is serving a seven year sentence under Michigan’s HIV Disclosure laws.  We’ve gathered here on this beautiful fall day to speak with State Representatives, Brian Banks, Winnie Brinks and Tom Cochran, about co sponsoring a bill that would amend the 1988 Michigan HIV Disclosure Laws, (MCL 333-5210), to place responsibility on the prosecutor to prove intent to transmit the virus, and that transmission actually occurred.  Right now the law is vague and left to interpretation, it ignores the intent requirement, and while the CDC categorizes spitting and biting as low risk for transmission, persons can still be prosecuted for these actions. Nor does the present legislation take into account that in 2016 an HIV diagnosis is a chronic manageable condition.

Did you know that in Michigan you can be charged with a felony and jailed for 4 years or more for not disclosing your HIV status to a partner?  An HIV diagnosis is no longer a death sentence, and yet men and women in Michigan and around the country are sitting in prison for non disclosure, and in some cases placed on a sex offender list, even if they didn’t transmit the virus to the accuser, even if they used a condom, and even if they’re on medication that lowers the chances of transmitting the virus by up to 96%. Thirty three states have laws that explicitly focus on people living with HIV, the only infection that can become a felony, in spite of the fact that there are other diseases that are transmitted in the same manner, and can also lead to death if left untreated, for example, Hepatitis B.  Iowa and Colorado are the only two states to have amended their laws to reflect the new science of HIV.

The US Department of Justice states, “While HIV specific state criminal laws may be viewed as initially well intentioned and necessary law enforcement tools, the vast majority do not reflect the current state of the science of HIV, and places additional burdens on individuals living with HIV.”   According to the PLHIV Stigma Index Detroit, 88% of respondents don’t trust Michigan courts to give them a fair hearing if they are accused of not disclosing their HIV status to a partner.  62% felt that it’s reasonable not to get an HIV test for fear of prosecution. 46% felt that it was reasonable not to disclose their HIV status for fear of prosecution. And over half of the respondents felt that it was reasonable not to seek care out of fear of prosecution.  Just because someone doesn’t disclose their HIV status doesn’t mean that they want to hurt their partner.  The choking fear of stigma and unjust prosecution is silencing, and it’s stifling our efforts to completely eradicate this disease.

I was diagnosed HIV positive twenty-five years ago, on October 29, 1989, and given a year to live. Since 2000, I’ve been on ART (Antiretroviral Therapy), one pill a day.  The virus is undetectable in my blood, which makes it unlikely that I can pass the virus to a partner during sexual intercourse. I will not deny the anguish that living with HIV causes, and has caused me over the years, but I have never held anyone but myself responsible for me contracting the virus.  As I told Representative Cochran:  To accuse a person of non disclosure, to jail them and ruin their life, while we no longer die from HIV if we’re in treatment with undetectable levels of the virus in our blood, seems to be cruel and unusual punishment to me.

All of the representatives or their aides that we spoke to on this day were gracious and receptive to our recommendations. The new bill that MCHHS crafted does not repeal the disclosure statutes all together.  A key part of the new legislation states, “A person who acts with the specific intent to transmit the HIV infection to another person, and engages in conduct that poses a substantial risk of transmission, and actually causes HIV infection to the other person, is guilty of a crime punishable by not more than 1 year or a fine of not more than $1,000, or both.”  When you take into consideration that HIV is no longer a death sentence, misdemeanor charges, rather than felony charges, are sufficient consequences for an intentional transmission of a treatable, infectious disease. If I might add, intending to infect someone with the Human Immunodeficiency Virus is very rare.

My personal feeling is that the laws should be repealed all together, but during a conference I attended earlier this year, I was told that because of the stigma, the animus surrounding HIV, prosecutors would use other legislation to prosecute offenders with the intent to infect, but with this legislation we are the gatekeepers.  UNIFIED: HIV Health and Beyond joins The White House National HIV/AIDS Strategy to End HIV, to support this bill, because it aligns with the  current science, and because we are dedicated to advancing prevention, providing access to healthcare, community research and above all, advocacy that we feel advances the dignity of people living with HIV.

My most memorable meeting of the day was at the Capital offices of the primary sponsor of the bill, the Honorable Jon Hoadley of Kalamazoo, Michigan.  Representative Hoadley is a formidable champion dedicated to modernizing the Michigan HIV Disclosure laws. He would like to have at least thirteen co sponsors for the legislation before he introduces it.  We’re already halfway there, thanks to the hard work of past advocates, and today we may have added four more. The MCHHS has another lobby day scheduled for November 11, 2016, and we need all of the advocates that we can muster to stand with us.  This is a call to action for those interested in reforming our outmoded, unjust HIV Criminalization Laws, to come on out and join us in Lansing, Michigan on November 11, 2016, in the gilded halls of the Michigan State Capital building.  Todd Heywood, the Policy Director for MCHHS encourages us to, “Take responsibility to empower ourselves to protect ourselves and our partner.”  For more information about the next Lobby Day contact Todd at, Todd@MCHHS.info, or call 517-899-6182.