On Listening To Ourselves

Hello Friends and Family! Wow, it’s been a minute, huh? I feel like that’s how I usually start these things seeing as my ADHD brain thinks about writing all the time, but the follow through is, ahem, lacking.

I started out 2025 in true Alex Fashion™. I had a costume party with friends to celebrate another rotation around the sun, spent a few weeks (though it didn’t feel like nearly enough) with my twin sister, and then had a nearly fatal medical incident.

See? Very on brand.

Since December I had been struggling with what felt like a hundred steps backwards in my health journey. I spent some time with my aunt in New York City and met up with a friend from England, but wasn’t able to do as much as I wanted due to hip problems. I ended up using my cane to help me get around, and while I’m more confident about using mobility aids in public, there’s still a lot of internal prejudice to overcome.

Fast forward to January and I’m still not feeling my best. I’m getting winded walking up a single flight of stairs, I’ve been getting dizzy more often, and I’m having PVC’s (premature ventricular contractions) almost constantly. Then one Sunday night, I fainted.

Well, kind of.

Fainting is not unusual for me (thanks POTS) but this felt different. I’m not sure if I ever actually lost consciousness, but I did feel like it was a bit of a dream state. The fatigue was so intense I struggled to keep my eyes open and could barely communicate with my family as they decided if I needed to go to the hospital. Ultimately, I vetoed the decision to go to the hospital and promised to call the cardiologist in the morning.

On Tuesday my cardiologist was able to squeeze me in for about 15 minutes to do a quick examination. At this point I was feeling like hell. Out of breath, dizzy, with heart palpitations and chest pain, I went in desperate for answers. Unfortunately, the only thing I received from this appointment was a condescending pat on the hand and a new prescription. As I left the office, a little voice in the back of my head said “don’t fill this prescription yet”. I still don’t really know why I listened to it, but I’m glad I did.

Wednesday morning I woke up feeling even worse than the past few days, only now I have a pounding headache on top of all the other stuff. Usually I would just pop some Advil and go on with my day, but things in my body just felt wrong. I could tell something was going on that wasn’t normal, and if I wasn’t going to get the care I needed from my cardiologist, I would go elsewhere. So, off I drove to the emergency room.

As any certified Spoonie will know, going to the emergency room is like opening a mystery package. Inside, you could have all the answers you seek, but most likely you’ll find normal test results. Imagine my surprise when I’m immediately taken back to do a CT of my chest and head, and the doctor comes back in less than 10 minutes with the results.

The CT of my head was clear, but the chest CT showed multiple pulmonary embolisms in both lungs. I had blood clots in my lungs. Multiple. And no one knew why, just that I needed to be admitted to the hospital asap.

As the hospital went through the process of having me admitted, the doctor and I went through my ever-growing list of medications. When we got to the medication my cardiologist had prescribed just the day before, she stopped and looked up at me.

“Have you been taking this medicine long?” She asked me. Her eyes were wide and I could tell that my answer was very important.

“No, it was only prescribed yesterday and I haven’t had the chance to pick it up yet.”

I have never seen someone go from alarmed to relieved so quickly. The medication is supposed to constrict my blood vessels to help increase my blood pressure and hopefully help the dizziness I feel upon standing. Unfortunately, if you have blood clots and take this medication, it turns out that it can stop blood flow past the clots, which in my case, would mean blood would stop flowing through my lungs.

I don’t have to tell you what happens if blood cannot flow through your lungs.

After a perfectly justified freakout wherein I cried to the doctor and asked repeatedly, “what do I do?” I was able to calm down. I hadn’t taken the medication so I wasn’t in any immediate danger. Well, aside from the clots in my lungs. I was admitted to the hospital, had an ultrasound of my legs to check for more clots, and started an IV drip of blood thinners.

I stayed in the hospital for the rest of the week and probably would have gone crazy if not for my family and friends who came to keep me company, as well as the fantastic cardiology nurses at Frederick Memorial Hospital. (Special shoutout to Jordan- thanks for accepting my sarcasm and replying in kind. If you can’t laugh at the bad things, what can you do?)

I had a follow-up appointment with my cardiologist yesterday and I went in demanding answers. I asked him why we didn’t suspect something more serious was going on the last time I came in, and he gave me a whole shpiel about how there was nothing to indicate anything more serious than my usual POTS symptoms.

Except there was. I told him something was wrong. I said this felt different and that I was worried something serious was happening. But, he didn’t listen, instead prescribing me medication that, had I taken it before starting the blood thinners, would have killed me.

Spoiler alert: I didn’t die. I listened to my body, and that little voice in the back of my head, and took my pain seriously. Had I not been so used to being dismissed by doctors I probably would have gone to the hospital the Sunday all of this started, but instead I gaslit myself and downplayed my own experiences.

All of this is to say, spoonies, I see you. Disabled folks, I’m with you. Women dismissed by doctors again and again, who are told they should try “losing weight” to solve all their problems, who are given sedatives for pain and referrals to yet another psychiatrist, I am fighting with you. Listen to your instincts. Listen to your body. Don’t dismiss your pain just because some entitled man with a degree says it’s nothing. We will fight to be heard, to be taken seriously, to get answers and real cures.

Listen to your bodies when it tells you something is wrong. Your life might just depend on it.