12/04/2025
Yet another health update.
This time though, it is actually good news. So, while there is still a really concerning issue with my blood, yesterday I got a call that was a tremendous relief. The gene testing came back, and they were able to rule out the mutation of JAK2 gene; meaning, the polycythemia that is presenting is not the variant that is polycythemia vera… so as it stands, I do NOT in fact have cancer or leukemia! (At least not blood cancer, still need to rule out bone marrow apparently)😁 🎊
Such a tremendous relief. Still, there is as of now, not yet any confirmed diagnosis of what the issue of my decline in health currently is. It’s clear that for the past 5 years I’ve been battling a chronic illness and some form of autoimmune disease, and when I contracted Epstein Barr this year, it escalated and I was sicker than I had ever been before. EPV knocked me down so hard, that even today, almost 5 months later, I still am affected by the symptoms. It took me nearly 3 months to recover enough to be able to walk around the house without getting winded, having a chronic fever, absolutely zero energy, endless fatigue and malaise, heart rate issues, extremely enlarged lymph nodes, fainting, and absolute zombie like brain fog. It’s not as bad as before, but these are still issues I’m having regularly, and they seem to flare off and on. They do mirror my “regular” autoimmune disease flares, but exponentially worse and longer lasting cycles. I don’t know if EPV and whatever chronic and autoimmune disease I’ve had over the past 5 years are related, but it may have been a trigger for something else entirely becoming more active. Right now we are looking into more testing, apparently there is some kind of quite concerning issue with my liver and kidneys as my enzymes are off the charts. My lymphnodes are still going through massive inflammation in cycles, and I’m wondering if this is chronic CPV or it triggered Lupus or something similar. The only potential thing we know that is most likely a diagnosis is POTS and MCAS, but that is potentially unrelated and part of a larger systemic issue that has been life long - but those two do make sense, as I also have fibromyalgia and Ehlers Danlos syndrome, and all of these are cormorbid conditions and are extremely common in autistic people. Also, apparently I have extremely low testosterone, which I find to be hilarious ironic as an AMAB, agender/femme presenting person. 😂
Anyway, whatever this is, it’s not going to change me and my mental state. I won’t allow my physical health, chronic pain, infinite fatigue dictate my happiness or living life, even tho at the moment it is extremely limited in what I can do. All I seem to do these past few months is sleep. I spend most of the day in bed until around 3pm because I’m just so exhausted and I don’t have the energy to start my day until quite late into it, and even when I’m up, the most I’m able to often do is just go downstairs, read a book, make some tea, watch a movie, and lay on the couch.
Neurodiversity Unbound has essentially been on break/temporary hiatus until I can get some results, answers, and treatment - or at the very least, continue to recover enough to be able to take on more responsibilities again. I haven’t been able to take on, or see any current or future clients in nearly a month, nor have I been able to attend my contracted work in research for Oklahoma State University, and that is probably the most challenging thing for me right now.
I don’t like staying idle. Despite my physical health and illness, my mind, (minus some obvious symptoms of cognitive impairment from being ill) my mental health, and my motivation and creativity are thriving. So, even though I’m prone most of the day everyday, I’m constantly reading and writing, doing my dharma work and my personal priest traingint, and helping my teachers and sangha, and still looking into trying to find the best means of scholarships for continuing my education for either entering a masters of social work/therapist degree or a doctorate in psychology program.
Really the thing I want more than anything atm, is just to see my friends. I know many of you have reached out but with my current situation or unpredictable sleep and recovery times, or my current buddhist studies class schedule often being at like, 3am my time because the school is in Taiwan - I’m nearly impossible to find or get a response back from, so if you’re reading this and you’ve tried, I’m sorry.
Anyway. That’s the update.
Thanks for all your support. I’m gonna go finish creating the liturgy texts and stuff for my meditation and heart sutra study group I’m starting that will begin soon, and then I’m gonna go back to bed and sleep for another two days. I love all of you!
Here is a picture of me from theee years ago, significantly less tattooed,significantly less bloated, and probably 30 pounds lighter. 🤣 I’ll get that back eventually!i
