The Beginning of My Invisible Journey

My long journey began in Virginia in 2001 at 18. I was in college at the time, and two friends and I decided to go on a trip during a three-day weekend in the spring.

We stayed at my friend’s house, and I remember very clearly getting a pain in my wrist. It was unlike any pain I had experienced before. It was so completely random. I had done absolutely nothing that would cause my wrist to hurt.

I thought, “My friends must think I’m lying and looking for attention.” It was the first time I had these thoughts, but it certainly wasn’t the last.

Of course, I didn’t know it at the time, but that pain was the first symptom.

Over the summer, I had other health issues. Since they were all seemingly unrelated, I chalked it up to being overweight and not exercising much.

I had nosebleeds, which I didn’t think much of because I had gotten nosebleeds since I was a little kid. But I had two brutal nosebleeds that should have set off all kinds of alarms.

But I was 18, about to turn 19. I couldn’t be sick.

I had weird eye infections, which the eye doctor didn’t even have a name for. I got an infection in each eye at different times.

But I was 19. I couldn’t be sick.

I had random joint pain, like the wrist incident in the spring. I pulled my groin muscle for no reason. I had problems sleeping and got bed sores. I had problems breathing. Sitting and standing hurt. I got winded walking to the bathroom. I was in a ton of pain.

But I was 19. I couldn’t be sick.

I took a gym class, tennis, because I thought it would help my health problems. It didn’t. If anything, it made them worse. I had horrible pain in two of my toes, which made it impossible for me to participate. I was out of breath in a matter of minutes.

But I was 19. I couldn’t be sick.

One day, I was walking to the office to sign up for classes, and I had to stop every couple of minutes to sit down and catch my breath. A friend of mine saw me, and the look on his face scared me. He asked if I was OK, and I broke down crying. He offered to sign me up for my classes, and I went back to my dorm room, packed, and drove home — three and a half hours away.

OK, maybe I am sick.

I went to the doctor, and he told me I was anemic. He told me to take iron pills. So, I did. I thought that would be the end of it. It was not. I drove back to college, and just two weeks later, right before Thanksgiving, I was home again.

This time, when I went to the doctor, he told my mom I needed to go to the hospital now. At the hospital, I had to stop and sit on a bench outside to catch my breath.

Once we reached the front desk, the look of horror on the check-in nurse’s face was not very comforting. Immediately, I was put in a wheelchair and taken to a room, where a nurse tried to get some vitals. The pulse oximeter on my finger wasn’t registering anything.

Then, the nurse told me my hemoglobin was 3.8 grams per deciliter, which she said was the lowest she’d ever seen in anyone who was conscious, coherent, and alive. Comforting.

Then came the emergency room. Talk about mass chaos. There were so many nurses and doctors running around to take care of me that it was terrifying. Inserting IVs was nearly impossible, as they couldn’t find any blood vessels. Finally, I was hooked up and had lifesaving fluids pumped into me.

Doctors performed an unimaginable number of tests, including a kidney biopsy. After five days, I was well enough to go home, just in time for Thanksgiving.

The following Monday, I got a call from the main doctor who had taken care of me. I had vasculitis. Neither I nor my parents had heard of it. Two days later, I got a more specific diagnosis: Wegener’s granulomatosis.

I didn’t understand the gravity of that diagnosis until later. But those words were the beginning of my long — and invisible — journey.

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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.