My Story: Part Two

Submitted on Jul 6, 2020 by  HEROconnor

On the morning of May 16th, 2016 - the first appointment with my primary care physician, I vividly recall waking up overwhelmed with new and refreshing feelings of hope. I stepped out of bed with hope, brushed my teeth with hope, dressed my body with hope; I just knew that this day was the day I would begin to receive legitimate explanations for my ailments. This day was the day things would finally begin to improve. At the appointment, I verbally shared with my new doctor all of the symptoms I'd been experiencing, as well as photos of the spots that had appeared on my body (but had disappeared since then). I also shared that I had been seen at Urgent Care on various occasions for these aforementioned symptoms and on each occasion, a metabolic panel was ordered by the physician and revealed that I had a very small number of white blood cells and low blood sugars. I repeated to the doctor the orders Urgent Care had sent me home with time and time again: sleep more, eat more, stop working so much. (Sure doc, who the hell has time for that shit in today's economy when you're young, working in the arts, trying to make rent, feed yourself, and keep the lights on? NOBODY.)

By this point, I was becoming noticeably frustrated and anxious recalling my negative experiences with Urgent Care, so the doctor took a moment to sympathize with me, then we immediately began discussing potential approaches. She stated that she intended to run tests for leukemia, lupus, and other autoimmune diseases. Even though the idea of receiving any of these diagnoses was incredibly daunting, the idea of FINALLY HAVING AN ANSWER washed the worries out of my mind as quickly as they entered. I thought, "Whatever, I'll figure this shit out no matter what happens. I just want to feel better already. I JUST WANT TO KNOW." I agreed to having all of the tests run and the doctor promptly left the room after promising that we would find answers. A moment after she left the room, there was a knock on the door- the doctor again. She asked, "You know, would you be okay if I ran a test for HIV?" I had shared with her earlier that I lived with my boyfriend of two years and that we had both been tested for STIs of sorts before living together and were monogamous. I repeated this again to the doctor in response to her question. I added, "I don't really think that's necessary considering my boyfriend and I have both been tested, but go ahead- let's cover all the bases." She nodded and left.

Now it was time for the waiting game. They had the vials of my blood which would hopefully contain all the answers I was looking for, as long as they were looking for the right things. Even though my body continued to fight against me, I was able to fight back in hopes that a solution was right around the corner waiting for me. Relief would be near. I'd recently begun working as an apprentice for an Education/Outreach program teaching movement to 4th graders in the Richmond and Charlottesville school systems. I was still teaching at the dance studio at night and preparing for their upcoming recital, but during the day, I shadowed seasoned teaching artists as they prepared for their own culminating performance which would include hundreds of 4th graders sharing a stage together in dance. I was extremely busy and in some ways, it was exactly what I needed. Even though I was mentally and physically spent, it seemingly caused time to pass faster as I waited for my test results. Working with kiddos during this time was also refreshing- I was making connections with them, learning new ways to communicate with them and to hear them out, and was completely SCHOOLED by their retaliation and defiance on multiple occasions- they kept me on my toes, opened my eyes, and inspired me daily.

Fast forward maybe a week or so and I'm at home packing for an out-of-town work trip to Charlottesville with my new co-workers. After packing, it occurred to me that I should check my online portal just to see if any test results had been posted before I left to go out of town the next morning. Then, there it was BIG AND BOLD on my computer screen… HIV-1 RNA= reactive. I can't even recall my initial reaction to seeing these results because I was in such deep denial. I do remember sharing the results with Rory and saying, "There's no way I have HIV… I'm sure I'm just misreading it. I’ll just wait for word from my doctor. No worries." If you know me personally, you're probably well aware that I have a tendency to worry constantly, so the fact that I wasn't very worried following reading these test results really tells you how far off my radar the possibility of being diagnosed with HIV was for me. I was much more worried about making meaningful connections with my co-workers during the trip out of town so they would like me and equally as worried about the possibility of falling short of anyone's expectations for me- you know, classic Heather stuff (I've chilled out a bit since then). Rory shared with me at a later time that he was extremely concerned after reading the results online, but resisted sharing the severity of his concerns with me in fear of making me anxious or upset before my big trip. This is a common theme in our relationship. We're working on it.

The following morning I woke feeling like trash blown out of the can, onto the sidewalk, and stepped on repeatedly. My stomach burned like I was digesting lava, my head was throbbing, and to top it all off… I started my period. Excellent timing, I thought. This trip is going to be a shit show. I somehow managed to make it on time to work, joined my co-workers, and began the commute to Charlottesville for the culminating performances. I plastered a smile on my face and did my best to engage in conversation with others. Meanwhile I felt as if my brain was continuously becoming more inflamed and would eventually break open my skull and spill out onto the floor of my co-worker's vehicle (nice impression that would be, huh). We finally arrived at the theater in Charlottesville where the culminating performance would be held (the one featuring hundreds of 4th graders sharing the stage together) and prepped for the students' arrival. I did my best to be helpful, not get in the way, and not overthink my actions to the point of fault. I was on autopilot and things were actually going alright. The students eventually arrived at the theater for rehearsal. The chaos of having so many young, excited humans around me helped to speed time up a little more and I wasn't able to fixate on my depleting physical state because there simply was not time to. Also, the positive energy from the students was uplifting and served as sufficient treatment for my ailments at the time. These kids were pumped to perform in a few days and I was pumped for them. Then lunch time rolled around. My co-workers suggested Chipotle for lunch and although I had been so nauseated that food had become more of a necessity than a delicacy for weeks now, I was feeling hungry and thoroughly prepared to house an entire burrito from Chipotle. We all piled in my co-worker's vehicle and off we went… the entire time I was thinking, "I hope I don't publicly vomit in front of these people, that would suck".

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