August 2019 – Dying to Have a Good Time

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It was the month of Burning Man. That meant a lot of saying no to most other events popping up, though I’m sure it won’t be all too surprising to know that I did still manage to sneak in a fair amount of smaller things. It was also the Month of Mia, as I like to call it, as we kicked off on the first with brunch and another go-round at a burner bike decorating party. Throughout the rest of the month, the two of us got rowdy at a Hash House Harrier event and hung at the burn. I also managed to do the smaller non-party things I loved like farmer’s market, beach time, taking my parents to an event called Tiki Oasis and hangs at the houses of family and friends. Free time on most days, though, was consumed with thrifting, Amazon orders, sorting through my storage unit and lots of other organizing before taking off for the burn on the 22nd.
The biggest event I allowed myself was the aforementioned Hash House Harrier weekend with Mia. Lots of hedonistic shenanigans that ironically ended up playing a roll in saving my life and doing so in enough time to still be able to go to the burn. The Red Dress Run of the Hash House Harriers (a drinking group with a running problem) had been sparked in 1987 by a woman named Donna Rhinehart and then made official in San Diego the following year. Mia told me that it was the biggest event of the year. Something easy to believe given all the other related gatherings over the weekend. Now you may remember from previous posts that I had been getting more and more self-conscious about bruises that had been appearing out of nowhere. By that point they had gotten bad enough that I and the abundance of nurses surrounding me in family and friends knew I needed to get checked out. I had no other symptoms, though, so I never would have guessed it to be too serious. That was until a hematology nurse I was hot-tubing with at the event told me it really could be and that I needed to get to the ER right away.
I had known I wanted to go to the doc before the burn so I didn’t have to “hear it” from other campers but after that nurse’s comment, I finally committed to going within the next day or two. A big part of why I hadn’t already was because I didn’t have insurance and didn’t know how to do it. That had been more stressful than the actual bruises. Go ‘Murica, huh? Anyway, heading over to visit my family the next morning on Monday August 5, I pulled over to the ER on Coronado Island with the intent of leaving if the wait was too long. Good thing it wasn’t as I was told by the ER doc with very little explanation that my life was in danger from the platelets in my blood being too low and I was facing being hospitalized.
I’d be in shock for months but things became a lot clearer as far as what was going on over the next week. I was assigned to an oncologist, as they are “blood doctors”, and was indeed hospitalized on the 13th. Turned out that I had developed a super rare autoimmune disorder called ITP (Idiopathic Thrombocytopenia Purpa) where my immune system was misreading the platelets in my blood as a foreign entity (think germs) and killing them off. All I had really known about platelets was that I used to donate them so it was going to take me an extra minute to try to understand and grasp the whole thing. Especially because I had no other symptoms.

What was explained to me was that the platelets in our blood are what causes clotting and stop us from bleeding out. Because mine had gotten so seriously low, I could have started bleeding out of my orifices like a horror movie at any moment. From there, the reaction of professionals would be constant enough to get annoying as they exclaimed over and over about how they couldn’t believe I was OK, not to hit my head and constantly questioning as if I had forgotten that I had shown signs of internal bleeding. I was told such things as how not having a period (I have an IUD) may have saved my life and had a nurse practically doing an interpretive dance over how OK I seemed when he expected to walk into my hospital room to find someone on their death bed. Like so many other times in my life, I was some kind of freak. That time, however, it saved my life. I must note that throughout it all, it was fun to put a smile on the nurse’s faces. I was in the oncology unit so they were used to being around super sick people dying of cancer. I came off as healthy and was full of my normal fun and smiles. Shit, the day I was hospitalized, I was even having a good hair day.
When meeting Dr. Vlad, an oncologist and hematology specialist originally from Eastern Europe, I had no idea he was about to become the main man in my life for the foreseeable future. Attractive, close to my age, taking trips around the world to do goodwill work and with other similarities, it made the connection a bit odd in that it sometimes made things a little less comfortable while at others a little more. Picking up on a relaxed side of his personality underneath the front of professionalism, I had to fight the urge to see him as a challenge and force myself to focus on the ITP. The best part of being paired with him: he had been to Burning Man and knew it was important. For my condition, his plan for the next couple months would be to use (absolutely horrible for the body) steroids like chemo is used to kill my immune system in order to balance my body back out.
When they looked to be working right away, he said he didn’t see any reason I wouldn’t be able to go to the burn with the reasoning being that I still had to live my life. I was more than appreciative for his understanding. It was healing to experience a doctor who actually thought of me as a person and considered the things that actually made my life worth living as opposed to just telling me not go. The ominous question on my mind about that was how much his point of view had to do with, as an oncologist, being around death on a constant basis and how much he categorized me with that group. I couldn’t grasp it but I really was walking a tightrope of life and death. I’ll always be thankful to him for realizing how much more important that made to be able to go to the place that was the foundation of my heart, healing and soul. I’d imagine it to be the reason I was able to get through the next couple months.

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