Tag Archives: thrombocytopenia

September 2019 – Bleeding Hearts

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I had just returned from being gone for two weeks on the pilgrimage of Burning Man 2019 When days before leaving for it, I had gotten out of the hospital. All I wanted was some down time to finish my damn California burrito in peace, snuggles from Sugs in that tropically decorated house Jewels had decorated like a true beach babe with my same taste and 20 hours of sleep. What did I get instead? Some tweaker showing up like a cracked out tornado as she talked even faster than me about how she had been the one dog/house-sitting and needed to grab the laundry she still had in the dryer. I didn’t know a thing about her and was not only completely overwhelmed but also uncomfortable as hell. Not to mention frustrated with Jewels for trusting someone like that, regardless of her being nice. Fucking bleeding heart, man.
My first instinct was to call Jewels to make sure everything was OK with the situation. I really didn’t like the woman being there at all, let alone having her car. Thinking better of it as I looked at my phone, I stopped myself. JerseyJ had bitched me out for being too overprotective with a call in the middle of the night on the 4th of July when her ex had been throwing a party at her pad when she was out of town. I didn’t want a repeat of that. Not to mention that I knew I’d be sending Jewels’ anxiety through the roof, possibly ruining the rest of her trip. So instead I spent the next three days miserably and uncomfortably dealing with the woman and feeling terrible for her sweet tween daughter. All the while trying to recover, survive a wretched cough and labor away on getting my stuff gathered, cleaned and put in storage before getting back to work.
Recover…yeah right. I had known the steroids weren’t working when my bruises had returned within the first couple days on the playa. That meant I pretty much expected bad news from a physical scheduled for the 5th. Not as bad as it turned out to be, though. Waking up on the morning of the 6th to multiple voicemails, the doctor’s office had been calling to say that it was urgent for me to be checked into the ER. My sister too since they had been calling her as my emergency contact. Whoa. I was in a serious enough situation for my emergency contact to be called. It may have been then that it was finally able to click. That it wasn’t just a passing fluke and was serious. Life slanted a little. My platelets were under 3,000. As a reminder, the normal range for Americans is 150k – 450k.

Going in for a platelet infusion, I argued with the ER doc that I also needed help with my cough. I was never going to be able to sleep in order to get better if I was constantly hacking so badly that my eyes were watering and I was almost throwing up. He blew me off. That is until he could hear me hacking up a lung for two hours from outside my room. That’s when a nurse came in to tell me that he was prescribing me cough medicine with codeine and that I had a respiratory infection. What I didn’t think about until until a week later when the infection was mostly gone was how coughing that hard could have possibly caused something to burst in my brain given my super low platelet count. Crikey!
Once again, I didn’t expect good news at the appointment with Dr. Vlad the day after that. My numbers were so uncommonly low that he had my blood taken twice to double check once there. His response was, saying with raised eyebrows and a surprised Eastern European accent, “well, you didn’t die”. That was followed with how I was to be hospitalized immediately, maybe for days. He let me go home for a couple hours first to get my affairs in order since I wasn’t showing signs of internal bleeding. That was let me go with nonstop and adamant comments from him, his staff and anyone in the health profession who heard my number to be careful to not hit my head. Nonstop to the point of making me WANT to hit my head.
Thinking about calling Jewel’s mom to watch Sugs as I drove back to pack up, I worried about asking it of her when she lived kind of far. Jewels already had that other woman doing it before me so, as much as I didn’t like it, I asked her to cover. Lord how I wish I would had just called her mom. Only going so far as to send her and Jewels messages to fill them in, I regret not being more outspoken about how I felt. I also wish I hadn’t left the cough syrup with codeine there. Especially after Tweaker Lady told me excitedly that people she knew would pay good money for it upon my return. Flash back to being a teen with friends drinking their parents booze and filling the bottles back up with water.
Back in the hospital, I received an IVIG treatment on top of the steroids that were still being used as a form of chemo. Coincidentally, that’s when my cough really started going away, too. My family didn’t come to see me. Parents because they had a cold and Wendy because we thought I was going to be in longer and she kept pushing it off. Sean…he was a lost cause. Besides the 10 minute ride I asked of him that was on his way home after picking up my nieces from school, I wasn’t even to get a text. Even after he was so upset upon dropping me off. Taking pictures of the two of us together and talking about how serious it was, he also commented about how one of his dogs had recently passed from the same thing. It’s what I expected, which was what hurt the most. What was newly painful and surprising, however, was when I found out that he was planning to buy his neighbors who had just lost their dog an expensive puppy from a breeder. He couldn’t be bothered to give a crap that I was fighting for my life but was doing that. Wow. I could at least find a little solace a couple months later when he told me that he was having a major mental break at that time and was in and out of touch with reality. Though that was a whole different kind of heartbreak.
At least I had friends that would come through. Well, a handful of them. Mia surprised me the most, coming once or twice and even talking about coming back to spend the night. Nikki and Kati came of course. I could always count on them. Nikki with lots of fun pampering stuff like facial masks, Kati with a book and a burrito. Not to mention finding the time to make it when she was dealing with major pain in the ass paperwork, calls and other setup stuff for starting a kids school for aeronautics. To make it even harder on her, she showed up when I had a bloodied IV in my arm and was being surrounded by nurses poking and prodding for too many different reasons to count.
Always the weirdo (and probably still in shock), the experience was new, exciting and even a little fun. I wowed all the nurses and staff with positive energy. They commented another two or three times about how I didn’t seem like a patient and how it was the happiest room they’d been in. At one point, I had a dance party with myself and even had a stationary bike brought into my room for a teenie bit of exercise. It was great to brighten their days albeit a little somber given that the reason for what they were accustomed to dealing with cancer patients. Over all, it was the best time to end up there if it was necessary. I was exhausted and in desperate need of de-stimulation as well as getting away from the sun.

Getting out of the hospital and back to my beloved home-sweet-home (and sweetie of a roomie) once Jewels was back, it was time for the last round of unpacking, cleaning from the burn and putting the rest of that stuff so far into storage that I didn’t have to see it until the next burn. Having drinks with one of the besties at her local dive soon after, it was nice to be back on the supportive side of things. She was understandably hurt by the reaction of her husband during an already stressful remodel of their house while living in the middle of it with two young boys. He had been so wrapped up with the project and work that he was too stuck in tunnel vision to remember that they existed. It was the second round of the same thing as they had done the same thing with the same result on their first house only a few years before. Que a weird form of suburban sadomasochism and drinking too much. Speaking of the suburbs, I made it to a movie and a drink with the other bestie and a couple of moms she was friends with. I connected fine with them (they seemed to be “cool” moms) but it was still weird listening to them talk with rolling eyes about the PTA and other scary suburban stuff. All-in-all it ended with me thinking, once I stopped being oblivious to one of the women disregarding my girl, that the suburbs still sucked.
Life was back to the norm almost instantly. I was proud of myself for making it to one of LanaBell’s soccer games within days of getting out of the hospital, though it was surreal (and a bit of a struggle) to be in a hot and sunny park while still on the roids. Smiling as I stole glances at her big sister under a tree with her boyfriend (aha young love) while talking with her mom, she commented on how her and her nurse colleagues called someone like me a career patient. Man did that hit, but life goes on and so would I. Beyond that, it was nice to participate in a few other “normal daily life” things over the course of the rest of the month. Dinner with the fam at Sienna’s favorite for her 11th b-day, Old Spaghetti Factory, Pop’s favorite Barona Casino followed by hanging with the family at their estate (though never comfortable there), hanging with Mia in OB and Jewels at her pad. Then there was writing the sentimental thank you note to Dr. Vlad for all his help with the ITP and continuing to be proud of Kate as I watched the progress of her aeronautical school for kids, trying in vain to think of a way to help.

There was more than enough to make for a happy month. Lots of walks along the beach, finally finishing up cleaning off the bike I borrowed from Jenny for the burn and getting the tent back to the folks, yoga at home (shout out to Yoga With Adrienne), dinner with the family again (including Grandma who had come down from L.A.) for Restaurant Week at La Bocca in Little Italy, driving around to see Halloween decorations and, I’m quite proud to say, hosting a local burner happy hour at THC. I had gotten frustrated with not seeing anything going on around me in our burner community so I went ahead and empowered myself to make it happen with a reminder of the “doacracy” mentality that had been taught to us. Go me! Another thing I was proud to have ponied up with and taken care of right away was when a palm tree fell on my car and busted the windshield. Well, Tavian’s car really as I was just the long-term renter. He didn’t think insurance would cover it, but seemed to be guessing, so I decided to do my own research. It’s amazing how much being broke can inspire when it comes to potentially lowering a bill. Getting past the overwhelmed anxiety that would have stopped me in the past, I called the insurance company and jumped through the hoops there to find out that it actually WAS covered with a $100 deductible. Someone was sent out to change the windshield and it didn’t affect the policy because it had nothing to do with my driving. Beyond that, we even got to celebrate Grandma’s birthday at the end of the month. Yep. Life was back to normal and changed forever all at once.

Before Grandma’s birthday, it was Sienna’s turn. Though right before that was when the beginning of what would be a long and emotional roller coaster about the ITP hit. How fragile and temporary our bodies were, not showing any symptoms beyond bruising to warn me, the reality of most of the relationships in my life…it was like a bomb went off, exploding in too many different directions to keep track of. I told Wendy about it. Specifically because I was worried I was going to start acting weird. Isolating and getting really dark, pushing everyone away…when things were really bad, I got nasty. It’s not something I’m proud of. I’m just in so much pain and unable to grasp what’s going on…I can’t get away from it. The picture of a wounded animal cornered, snarling and biting at someone trying to help has always popped into my mind.
Wendy had asked me to handle the decorations for Sienna’s b-day on the 21st and I had been excited to do it. Balloons and live flowers I had gone to get at the market – whatever I could think of to make my niece happy. True, I was running around like a chicken with my head cut off the morning of, but the level at which I was already disoriented and exhausted by the time I arrived at their house didn’t make sense. That’s when it happened. With Dad standing on one side of me and Sienna on the other, my being seated, we all worked on the decorations as they excitedly chatted away. Feeling it come on, I calmly called out to Wendy, her ignoring, as the first episode I’d had awake in years started. “Episodes” as in short mystery sessions I’d had for over a decade, both mental and physical, that gave very little clue as to what was happening to witnesses beyond my becoming a bit distracted, disoriented and starting to sweat. At first, and after being screened with nothing showing up, the associated medical team had blown them off with my main doctor’s response being “we don’t know, probably anxiety attacks”. Years later, after a witnessed grand mal seizure, the medical professionals involved at that time thought them likely somehow related to that. Whatever the case, I was totally whacked out after and needed time for my mind to reboot and exhausted body to recover. More time than I had.
Missing the beginning of the party to at least rest for a couple hours, I pulled myself together enough to go outside and join the festivities. That’s when, in my whacked out state, a little bit of the underlying resentment I harbored for my sister snuck out when I said something snarky about her to one of the kids moms. She felt justified in not talking to me for weeks after that. Regardless of how the ITP or episode played a roll or how I had told her only a couple days before about how I was just starting to get to fall into a dark place where I needed support. It didn’t need any help getting worse between us from there but it did. I felt abandoned when I needed her the most and when I tried to talk to her about it, she made it about her. I messed up but did I deserve that? I don’t know, maybe I did. But I still wasn’t going to accept it.








June Not So Much Gloom 2019

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Brigit and I started out June with one of the hikes that I loved so much. It was one of the Nor Cal things that hurt to be away from when home in So Cal or overseas. There had come to always be someone or something that it ached to be away from. It was one of the heartbreaks of the life that I had always dreamed of and was finally living. The day after, though, I experienced the opposite when being happy and proud to make it to an art preview in SF for the years upcoming Burning Man. Something I didn’t yet know was that it would have extra meaning due to my not being able to make it to most of the art in person thanks to serious health stuff was about to pop up.

Continuing in the same vein of making progress in my goal of taking advantage of all the amazing things a lifestyle of vagabonding offered, I continued my days and nights by hanging at the beach in Santa Cruz and making it to that hood’s monthly burner mixer. More Sound Camp than the parts of the community I was into, it was still nice to spend the first couple hours with the community before the EDM took over. Keeping with the beach theme a few days after that, I also stopped to spend sometime in Monterey when a ride took me there. A goal with driving rideshare that I had tended to fall short on more than I would have liked.
The most important event of the month toward goal-advancement was a virtual interview for the public teaching system in S Korea by the name of EPIK. Excusing myself from a lovely tea Brigit was throwing in the garden of the front of the house, I was worried before it even began about how hot it was that day. For good reason as I was disheveled, distracted and sweating through the entire interview. In a culture I had heard to be somewhat vain, I was more than a little worried about that being even more of a problem than what I was already worried about in regard to weight and age prejudice. So yeah, when I found out soon after that that I didn’t get it, I wasn’t exactly shocked. I was, however, a little unjustifiably resentful that I had been in such a bad situation for the interview in the first place by trying to make the tea while not having a decent option of where I could set up. An example of my weakness of FOMO, still being too much of a people pleaser and something I should have been more proactive to solve beforehand. I may not have been shocked by the rejection but the wind was definitely taken out of my sails for a hot minute. It had been my main focus without paying attention to a plan B (more like plan F) for a while. A lifetime of experience gave faith that I’d pull myself up by the bootstraps but ugh…it was a blow.
It was always a pleasant piece of magic to experience how the little things made such a helpful difference. The hiking, of course. B and I even managed to get Aaron out and I made it on my own to a trail called Garden of Eden that lead hikers along a forested railroad to a set of connected lagoons that were used as a swimming hole. Beyond freeing myself with taking a weight on my shoulders by paying JerseyJ back money she had very generously loaned me to get into a rental car for work after an unexpected situation, I avoided her most of the month. Speaking of that car, it felt empowering to change my own tire in the middle of the night when getting a flat during a work shift. I also found a big breath of peace when seeing a deer as I pulled out from the house on my way to another. With the all too common reminder of all the small moments I’d be sad to miss, I stopped to take a picture of a beautiful house, grabbed a beer at Monty’s, spent time with compadres and tried to continue going out to new restaurants at least a couple times a week to foodie it up instead of just looking for the most convenient, cheap and/or healthy option. Being the hot-mess I was, I found the humor when that included rubbing my eye with Sriracha when eating pho. I got to celebrate Brigit’s birthday before heading back to SD at the end of the month. A happy ending that added to a life of detail that had me mostly over my job rejection and moving onto the next step within a couple weeks.

Something big happened at the end of the month. Big and scary, though I wouldn’t know it until later. I had been getting random bruises and was finally starting to trip about them enough to ask someone. I had been getting them for a while, actually. Before then, I had been blowing them off as one of the clumsy times I ran into something or when I bruised easily after knocking a few back. I wasn’t drinking enough for that to be the reason though. And I had started getting them too often to believe I was forgetting clumsy moves. They were only about the size of a thumbprint at that time but a tiny internal alarm was going off. Tiny but big enough that on June 25 I sent pictures to my nurse brother. As usual, he blew me off in his out of sight, out of mind way. I was self-conscious about them enough to bring it up again with folks from my Burning Man camp, Spanky’s, a few days later at a work weekend held at the farm of a couple awesome burners in Garden Valley, CA who were were part of a sister camp named Black Rock Bordello. Not just a farm by the name of Skunkworks, they had huge tents set up that they traveled with to help those in need and let Spanky’s use for those work weekends along with storing camp stuff the rest of the year. One of the hundreds of examples I could give about why I love the spirit of Burning Man. Making it to one of the pre-prep work weekends had almost been as important to me as going to the burn itself. It was also a great break in driving across the state between my two homes for the second time in a month, even if it did add just short of 300 miles to the trip.





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