What the health?

I’ll start off by saying I hope everyone had a nice Fourth of July. With most events in the region canceled, folks went all out with fireworks in the neighborhood. It almost sounded like there was a battle going on last night with the just constant explosions and pew pew pews.

OK, now on to the main subject of this post: my health history. I have many health issues, most of which stem from either my weight or an autoimmune condition I have called Granulomatosis with polyangiitis (GPA, formerly known as Wegener’s granulomatosis).

I’m going to share with you the story of how I almost died at age 19 before the GPA diagnosis. My myriad of symptoms started in 2000 with random joint pain. I remember being with friends, and my wrist just hurt for no reason. Heat didn’t help. Cold didn’t help. And I felt like a hypochondriac — the first of many times I felt that way — because there was just NO reason for this. And I felt like my friends thought I was just looking for attention.

More symptoms would show over the course of a year, all of which were seemingly unconnected. I attributed pretty much all my symptoms to being overweight. I had horrible nosebleeds (I had nosebleeds my whole life, so I didn’t think too much about it), I had an eye infection that the doctor didn’t have a name for (some sort of infection between layers of my eye), joint pain, breathing issues, sleeping issues and other things that I know I’m forgetting.

I really felt like I had to be imagining all this or I was being a drama queen. How could I have THIS many health problems? I know that people thought that I was making most of it up. I definitely should have gone to my regular doctor at some point. But denial is a strong thing, and I was 18-19! How could there be anything seriously wrong with me?

Well, cue my sophomore year of college (2001). Boy oh boy. Everything just got worse and worse. I actually had taken a tennis class that semester because hey, all these issues are from my weight, right? Well, I ended up with the most excruciatingly horrible pain in two of my toes. More on that later.

Thankfully, sports classes only take up part of a semester, so I finished that class before things took a turn for the worst. I was a resident assistant, and we were putting together a haunted house. I remember just a day or so before, I was working on it, and I felt just HORRIBLE. I told the RA director that I wouldn’t be able to help with the haunted house, I was going home. He was not happy, but he can suck eggs.

So, I went back home (3.5 hours away), and I went to my regular doctor. He diagnosed me as being anemic and told me to take a ton of iron pills. Well, I go back to college, then just a few weeks later, I am definitely not better. I am a million times worse. I could not breath if I was lying down in certain positions. Moving was brutal. Sitting or standing was worse. I remember having the thought of “If this is how much pain I’m going to be in for the rest of my life, then maybe I don’t want to live anymore.” Yes, folks, it was so bad I contemplated suicide.

The thing that got me to finally go back home was this: Students had to stand in line to sign up for classes for the next semester. I was walking from my dorm to get in line, and I had to sit down several times to catch my breath. When I finally got in line, one of my fellow RAs saw me and was apparently horrified by how I looked. I actually just burst out crying over how just terrible I felt. Well, he actually offered to sign me up for classes. I couldn’t even believe it. That was one of the nicest things that anyone has ever done for me. I took him up on his offer, then packed my bags and drove back home. It was a long 3.5 hours, and I almost fell asleep at the wheel a couple times — or passed out, really.

So, I get home, and the next day we go to the doctor, who promptly shows signs of panic in his face and sends me to the ER. So, we get to the ER, and I have to sit down outside before I can even walk in. So, apparently, I looked like I was 10 miles past death, because wow, what a response from the medical staff. Nurse comes running with a wheelchair, and they roll me in immediately to take some basic tests. I don’t think they were able to get a blood pressure, but my heart rate was 160. And my hemoglobin was 3.8 (see below). The nurses said that was the lowest hemoglobin she’d ever seen in someone who was conscious, coherent and ALIVE. That was fun to hear.

Photo from today of me pointing at my hemoglobin in 2001. Yes, I still have all my test results from then.

The next bit was a blur. I was in the ER and was swarmed by nurses and doctors. I think that’s when it hit that this was serious. They were trying to get IVs in me, but they couldn’t find any veins. It was total madness. I remember making jokes, but I don’t remember much else. They finally found veins, and I was on blood and fluids and who knows what else.

I spent five days in the hospital, with just an unreal amount of tests. It really was a blur. I remember my family was there; my brother and sister came in. I think my mom and brother stayed the night (not at the same time). I hate that I can’t remember stuff like that. I had two purple toes that I almost lost. I had congestive heart failure. Your body regenerates new blood every three months, and I was told my blood wasn’t regenerating, so I was basically bleeding to death without bleeding.

I want to say there were five doctors trying to figure out what was up. The main doctor suspected vasculitis, and I had a kidney biopsy. That I felt. All of. The needle going into my kidney. The snipping of my kidney. The needle coming back out. They gave me numbing stuff, but boy oh boy they did not give me enough.

But the biopsy confirmed a diagnosis. I was discharged the day before Thanksgiving, and I got one call from the doctor who said it was vasculitis, then a few days later another call that advanced that to GPA.

I missed the rest of the semester, but I somehow was able to finish my classes. I was back to school the next semester, but I was still a ways off from getting better. I still struggle with it every day, but I don’t want to let it control my life.

So, that’s the story of how I almost died half my life ago.

By the Frazzled Daisy

2 thoughts on “What the health?

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