So many POTS but no Spoons

I am a mother of two, a photographer, and so much more. I lived with undiagnosed dysautonomia in the form of POTS from ages 15 to 39 (more than half of my life).

I survived a traumatic brain injury when my face broke a windshield at age 15. Within the next year I would have a ruptured ovarian cyst that led them to go in and find stage 4 endometriosis. I was given this information via a grey-haired man handing me a pamphlet and stating “it’s just always going to hurt” and “don’t plan on having any kids” …and then sending me out to my mother.

With every virus (I went septic once from strep) and trauma (i.e. birth), I would lose more of my stamina and strength.  It was invisible from the outside but I was a constant storm internally.

I was told for 24 years that I was just anxious and needed therapy. I was diagnosed with bipolar disorder (within 15 minutes of meeting this psychiatrist), post-partum depression, generalized anxiety disorder, social anxiety, and severe chronic depression; all of which were coupled with heavy psych medications that I would end up having horrific reactions to. In retrospect, I can’t believe what I pushed through all of those years, the entire time thinking it was something I was doing wrong. Some fault of mine.

I knew instinctively that it wasn’t only “in my head” - something was very wrong.

Knowing that all they had to do was monitor my vitals says so much about the state of American healthcare. (30 seconds and a pulse oximeter would have told them so much)

I worked in medicine and in Earth conservation and thought I had my whole life to accomplish my goals, but I became fully disabled in 2016 after falling down the stairs, concussing myself again. (That Vagus nerve!) I spent 3 years after that being told by a neurologist that I needed to walk more and, again, “just get therapy”. So I completed an intensive outpatient program, DBT, went to weekly therapy, created a meditation practice, and would walk, even though I would end up unconscious on the side of the road because of my orthostatic intolerance. I cut out caffeine, red meat and refined sugar, and I increased my fluids. Still, they would find something new to blame it on.

No one was listening.

I figured out my own diagnosis while waiting in an orthopedic urgent care after my neck had gone kyphotic after a very minor bump into a small dog toy (enter Ehlers-Danlos Syndrome and craniocervical instability suspicion). There was a study up on the wall that was written by the doctor that would later diagnose me with mast cell activation syndrome, and it was describing dysautonomia in a conditioned athlete following a concussion (my story exactly).  It took me years to convince them to test me and I got my diagnosis in 2019.

If the pandemic had not created a demand for “long COVID” clinics and video visits, I would still not have access to basic physical therapy and would definitely not have the cardiologist and pulmonologist that I do now.

I am still years away from a spot at the John Hopkins POTS clinic, I cannot get disability, and there is no mental healthcare for people like myself.

I have been separated from my children because I am medically unable to be vaccinated and they deserve to have a childhood. It has been indescribably, excruciatingly painful. I have survived the virus twice, both times leaving me more disabled. Going to my infusions twice weekly was how I got out and experienced the world. Now the VNA comes to me and I get them at home. I am grateful for them, they’re amazing.
I miss life, though.

I focus my time on surviving and find great joy in helping others that are trying to navigate this path. There aren’t many people I’ve come across that have had it as long as I have and I need that to mean something. I need it to help others.