The first night I knew something was really wrong with me was in early December 2021, at my son's state football playoff game.

I should have been locked into the game, cheering, living in that moment as a dad. Instead, I could barely walk a few feet without needing to sit down. My body was sending me a message I could not ignore.

Something was wrong.

Not "I don't feel great" wrong. Not "maybe I'm tired" wrong. Something deeper. Something that made me feel like my body was no longer working the way it was supposed to.

It was late, so I waited until the next morning to go to urgent care. When the nurse took my blood pressure, it was 220 over 116.

She did not hesitate. She told me I either needed to lie down on the floor while she called 911, or Corrine needed to drive me straight to the hospital.

So we went to the ER.

And after hours of waiting, after my blood pressure had been that high, after I told them I could not keep food down and something was seriously wrong, the doctor told me I was non-emergent and sent me to gastroenterology.

That was the beginning of a pattern I would come to know too well.

I would tell doctors something was wrong.

They would tell me I was fine.

I would describe what was happening inside my body.

They would tell me it did not make sense.

I would keep getting worse.

They would keep sending me home.

After that first ER visit, I had a colonoscopy. They told me there was no cancer and that everything looked fine.

I told them I was not fine.

I told them there was still something wrong with me.

Their answer was basically, "If you don't feel good, go back to the ER."

I remember thinking, "The ER is who sent me to you."

That is what it feels like when the system starts bouncing you around. Nobody wants to own what is happening. Nobody wants to say, "We do not know yet, but we believe you, and we are going to keep looking."

Instead, you get passed from place to place while your body keeps falling apart.

I kept losing weight. Fast. I lost 40 pounds in a month.

I could not keep anything down. I was basically living on water and Sprite. Every time I tried to eat, my body reacted like I was allergic to whatever I put in it. I had brain fog. I could hardly walk. When I did walk, I looked like I was going to pass out.

I kept saying the same thing: something is wrong.

But when doctors cannot immediately find the answer, too many of them stop looking for the problem and start looking for a way to explain you away.

For me, the word that kept coming up was anxiety.

Anxiety became the label that followed me into rooms before I even had a chance to explain what was happening. Once that word was in my chart, it felt like every symptom I described had to fight its way through that filter.

Chest pain? Anxiety.

Tightness? Anxiety.

Trouble breathing? Anxiety.

Feeling like I was having a heart attack? Anxiety.

Knowing something was wrong? Anxiety.

One doctor told me that sometimes you have to fix what is going on in your head before you can fix what is going on in your stomach.

By the fourth ER trip, I was not asking anymore

We went to the ER four times in about three weeks before they found the blood clots.

At one point, the EMTs told us I was becoming a "frequent flyer."

I know people say things like that casually. Maybe they do not mean anything by it. But when you are the person inside the body that is failing, words like that land hard. They make you feel like a problem. A burden. A nuisance.

But I knew what I knew.

I could not breathe right.

My lungs hurt.

My chest hurt.

I had tightness and pain that scared me.

I felt like I was having a heart attack.

And every time I tried to explain what was happening, I felt like I was being asked to prove that my own body was telling the truth.

Then came the night I looked at Corrine and said, "Take me to the hospital or I'm going to die."

That night felt different.

I could feel the life going out of me every time I passed a clot. I knew something was terribly wrong. Blood clots were honestly the last thing on my list of possibilities, but I knew my body was in trouble.

We went back to the ER.

They put me in a wheelchair and left us in the waiting room for hours.

I was in constant pain. I felt like I could not breathe. I had already been to the ER multiple times. I had already told them something was wrong. I had already been sent home over and over.

And still, I waited.

Eventually, they took me back for a CT scan.

When I came back, everything changed.

It was January 2022, and they had finally found what my body had been trying to tell them. I had two lungs full of blood clots. I had clots in my ulnar and radial veins in my arm. I had clots in my jugular veins. I had clots in my legs.

Within minutes, a nurse came out and said they were taking me to a room. They moved me into a trauma room.

I remember looking around and asking, "Why are we in a room like this? Am I dying?"

The nurse said, "No, this is just the only room we have available right now."

But then the room filled up.

Doctors. Nurses. People moving fast. A swarm of activity.

They started me on heparin.

As soon as it hit my bloodstream, I looked at the nurse and said, "Sorry to worry you, but I think I'm having a heart attack."

She immediately hooked me up to an EKG and got the heart doctor on the phone.

It was not a heart attack.

But it was one more moment where my body was terrifying me, and I was stuck trying to tell people in real time what was happening inside of it.

The difference was that now there was proof. Now the scan had caught up to what I had been saying for weeks.

Later, they took me for a vein scan. When the nurse came back, she said she was going to talk to the doctor before putting the blood pressure cuff back on.

I remember thinking, "It must be bad. I must have more clots if they won't even put the cuff on."

We were in the ER for about 12 hours before I was moved upstairs.

When we finally got to the hospital floor, a nurse said something I will never forget:

That is a strange thing to hear after weeks of being told nothing was wrong.

It is terrifying.

It is validating.

And it is infuriating.

Because I had been saying it the whole time.

The scariest part was not just being sick. It was being sick and not believed.

People talk about medical emergencies like the scariest moment is the diagnosis.

Sometimes it is.

But for me, one of the scariest parts was everything before the diagnosis. It was knowing something was wrong and being told, again and again, that it was not.

It was sitting in rooms with people who had the power to help me, while they dismissed the symptoms I was living with every minute of the day.

It was hearing that what I was describing was physically impossible.

It was being treated like anxiety explained everything when my body was clearly sounding an alarm.

And the truth is, once that happens enough times, it does something to you.

I was angry.

I was exhausted.

I was emotional.

I felt isolated.

Not because I stopped believing myself. I never stopped advocating for myself. I kept telling them something was wrong and that they needed to fix what was happening to me.

But it is hard to keep walking into medical settings knowing you may have to fight just to be taken seriously.

It is hard to be in a body that is already betraying you and then feel like the system is asking you to prove you are not making it up.

And for a long time, we still did not have the full answer.

The answers kept coming too late

The blood clots were not the end of the story.

In July 2022, after my fourth CT, doctors found life-threatening spinal stenosis. I was told that if I did not have surgery, I would likely be paralyzed from the neck down within a year.

That is a hard sentence to hear.

It is even harder to hear after months of being told that nothing was really wrong.

I had the neck surgery, but even after that, there were still symptoms that did not make sense to the doctors I was seeing. I kept describing what was happening in my body, and I kept being told that what I was describing was physically impossible.

It was not until one year after my neck surgery that a doctor finally diagnosed me with Autonomic Dysreflexia.

That is what makes this so hard to accept.

It was not that the symptoms were not real. It was not that I was not explaining them. It was not that my body was impossible to understand.

It was that I had not been in front of the right person yet.

Looking back, I should have been sent to a PM&R specialist much sooner. I should not have had to wait a year after surgery to get the diagnosis. The neurologist who did my surgery said he could not do any referrals until I was one year post-op.

One year and five days later, I got the diagnosis.

That timing still says everything to me.

Autonomic Dysreflexia is serious. It can be dangerous. It can cause symptoms that look confusing if you do not understand spinal cord injury. But that is exactly why more ER doctors, nurses, and medical staff need to know about it.

Even now, I carry an AD card. We have had multiple conversations with patient advocates to try to flag my file when I go to the ER. And still, we run into people who do not know what it is or do not understand how serious it can be.

That is not just frustrating.

It is dangerous.

That does not mean every doctor is bad. It does not mean every nurse dismisses people. I have had medical professionals who helped me, listened to me, and took me seriously.

But I have also learned that you have to be willing to push back when something is wrong.

I knew something was wrong.

I kept saying it.

First, the truth showed up on a scan in January 2022, in a trauma room, surrounded by doctors and nurses moving like a swarm of bees.

Then more of the truth showed up in July 2022, when they found the life-threatening spinal stenosis.

And later, another piece of the truth showed up when a doctor finally recognized Autonomic Dysreflexia within minutes.

But I should not have had to get that close to dying before someone believed me.