My name is T.J.
I grew up in the 80s/90s where being “double-jointed” was just a weird quirk that a couple of people had – well, the women on both sides of my family were affected pretty hard by the hypermobility. I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unair conditioned in Texas. I was helping my mother with dishes when I started to feel slightly dizzy, so I held onto the counter-top. When I woke up after passing out, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.
And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.
Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).
So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, trochanteric bursitis and inflammatory arthritis – after years and years(as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid.
When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind. I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who knows that I would have zero issue, as long as he used caution around crowds.
My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.