Five days before everything came to light, I sat in a rheumatologist’s office explaining my concerns. Instead of investigating, she dismissed me, chalking it all up to my Ehlers-Danlos syndrome.
My after-visit summary simply said to “wear spandex-type garments,” and there was no more that rheumatology could do for me. I left feeling unheard and uneasy, but tried to move on, although super frustrated with my quality of care.
I had been having pain in my leg behind my knee, and what I thought was general tiredness. Not long after, I developed what felt like a charley horse in my leg that wouldn’t go away. For over three days, I tried everything — stretching, hydration, heat, creams, even pickle juice — but nothing relieved it.
At the same time, I began to feel a heavy pressure in my chest, like someone was sitting on me, making every breath an effort. I almost didn’t go in, convincing myself it was “just a cramp” and anxiety, and that I had just been at my rheumatology appointment, and that everything was just probably related to my EDS.
When I finally decided to go to the ER, they discovered a DVT in my leg and multiple pulmonary emboli in my lungs. Hearing those words shook me. I realized just how close I had been to ignoring life-threatening symptoms because they were minimized or explained away.
What was supposed to be a one-night stay for observation turned into five days. I couldn’t even walk because something happened in what I think was my vein in my foot, which would not allow me to put pressure on it. I was released on enoxaparin.
I was fortunate that someone shared Stop the Clot with me. And I was even more fortunate that there was a PEP Talk webinar on Zoom a few days after I was discharged, which provided me with so much information and knowledge.
Blood clots can be silent and misleading, disguising themselves as something ordinary. Please, if something feels off, trust yourself, push for answers, and don’t let your concerns be dismissed. Listening to your body could save your life. I refuse to be a number.
