My official diagnoses (not me having to look up the plural of diagnosis and wishing it was just one)
• PKD or Polycystic Kidney Disease (Autosomal Dominant with innumerable cysts on both kidney)
• POTS or Postural Orthostatic Tachycardia Syndrome (it’s possible I have the hyperadrenergic type because my BP often skyrockets upon standing)
• Ehlers Danlos Syndrome (Hypermobile type- but I’m lucky to not get full dislocations)
• lots of “mini” diagnoses that were more symptoms of the others like peripheral neuropathy, depression, severe dismenorrea, anxiety, Bipolar (misdiagnosis), IBS, ect…
Highly likey diagnoses (going through the process of diagnosing or currently unnecessary to pay for more testing)
• MCAS or Mast Cell Activation Syndrome (multiple doctors and many people believe I have this but the diagnosis is just taking a while due to the process of finding a knowledgeable specialist in my network)
• Adenomyosis (have had multiple ultrasounds that indicate that I likely have it but was told that it’s still mostly diagnosed after a hysterectomy)
• ARFID or avoidant/restrictive food intake disorder (this one is extremely picky eating which definitely sucks when combined with physical food reactions)
• Autism/ADHD (I know it’s a hot button topic for people to “self diagnose” these but if those people want to pay for my medical and psych bills I’d be happy to get the testing done lol)
•PTSD/cPTSD (read commentary on autism/adhd cuz it applies here too)
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I did an interview that overviews some of my health journey in December of 2024
Some of my story- I got injured more than the average kid and starting having some bad symptoms in my preteen years, the worst being during my cycle, the pain was bad enough for me to lose consciousness and sob just wanting it to stop. I thought and was told I was “normal” for years and years when I was actually mildly chronically ill the whole time. I had trouble exercising for years and I always had high heart rate and blood pressure but it was just brushed off too.. I was diagnosed with Polycystic Kidney Disease, Postural Orthostatic Tachycardia Syndrome and Hypermobile Ehlers Danlos Syndrome all around 2017. I then had a terrible reaction to an antidepressant in 2018 that lead to me not sleeping for up to 7 days and going into an episode of psychosis. I was committed. It was obvious to my family that my episode was connected to my illnesses, even based off of how, if I stood up, my POTS would act up but that would amplify the psychosis symptoms exponentially. But no one listened and sadly, we knew so little of what to do, so I was diagnosed as bipolar despite never having a manic episode prior to that or even having cycling depression. I was put on 5mg of olanzapine and switched to Wellbutrin. I was ok but not quite myself and then it got so much worse.. the next year, during a really bad moment of stress and deep upset mixed with some existentialism, I had a breakthrough episode of psychosis on Xmas Eve of 2019, I was taken back and committed again. This time they went really overboard, they quadrupled my dose of antipsychotic and added Depakote and took away the Wellbutrin. I became a shell of myself and barely remember the following 4 years. In October of 2023 I had lost my health insurance and me, my husband and sister were struggling financially and I didn’t know how I would continue to get meds and secretly stopped taking them in hopes I could wait out and see how long I could go without and then ration them… but then suddenly I realized, not only did I not go manic or psychotic, but I actually started to feel a tiny bit of happiness that I hadn’t even fully realized I had been completely devoid of. As the drugs got out of my system, everyone around me noticed I was becoming myself again. We realized fully what the meds had done to me and we now affectionately call that 5 year time period, where I was essentially gone, “the snap” like in the Avengers movies..
The only problem is, going from a shell of a person to a VERY feeling person can be A LOT. In 2024 I found myself again but my physical health took a nose dive. I had been so inactive both physically and mentally but suddenly I was pushing myself constantly. I started getting new and worse symptoms, and in October 2024, I started reacting to every single food I ate. We researched MCAS and everything fit, even possibly the reaction to antidepressant and also my symptoms being somewhat subdued during “the snap” makes sense too because the antipsychotic I was on was also an antihistamine which can mask symptoms of MCAS. I was hospitalized in November and have just been trying to find a good specialist in network ever since..
Stick around if you want to see more and let me know if you have any questions!
Sara Sidewinder 