Little Victories

Living with an undiagnosed medical condition is hard. Having doctors brush you aside, friends not understand, and trying to make it through the maze of finding a diagnosis is nearly impossible.

I've been sick my whole life. When I was younger I had chronic ear infections then it moved on to a lot of strep throat, pneumonia, bouts of the flu, whatever it was I would catch it. When I was in the 2nd grade I had strep throat, two types of flu, and pneumonia all in one academic year. Anyone can see that this isn't exactly normal.

Always being sick wasn't something I grew out of, it just kept evolving. In high school it turned into constant sinus infections, but the thing was there was always some sort of infection but my pediatrician never stopped to think that it wasn't normal until I was 16 years old. When I was sixteen I went into septic shock, something 50% of people die from. Asides from the septic shock my kidneys almost failed, I had to be put on heavy duty oxygen in the pediatric icu, my entire body swelled and it put so much pressure on my organs that my hair started to fall out. It wasn't until this happened until I had some acknowledgment that there was a chronic syndrome going on and that was almost three years ago.

I started thinking more and more when I found two e-cards I was sent in the hospital while I was cleaning out some old stuff in my room. I know I've come far from where I was then, but it's frustrating to be searching still. I've had a couple things diagnosed but being shoved from specialist to specialist hasn't gotten me as far as I think it should.

I finally think I found a new doctor that treats one of my conditions. I see him later this month and I'm hoping he's as good as I've heard he is. For now my other doctor is working on finding more and more genetic testing to run. I can tell that she feels like she's at the end of her rope and we're both becoming more and more frustrated. Along with this frustration comes a sense of fear. In the past couple of years I have been getting worse and worse and it's hard for me to ignore it. I hear things about certain conditions that are tested for and I become scared. And what's even scarier is the fear that my doctors will completely give up on me.

I just keep reminding myself to be glad that I've come as far as I had. When you're trying to navigate the labyrinth little victories are more important than in any process. When it can take years to diagnose a rare condition any step forward needs to be recognized, any acknowledgement needs to be recognized, and being sent off to a new doctor needs to be seen as a gateway to finally figuring something out not someone giving up on you. If I hadn't been bumped around from doctor to doctor I wouldn't have ended up with the doctor I have now, and even though she's no long enough she has still figured out more than anyone else had. I need to keep all of this in mind as I wait for my appointment later this month. There comes a point where if you aren't proactive you won't be taken seriously, and that's what I've been doing and I've been getting more and more done.

All I need to do is to keep moving forward.

-Tate