Counting Down

Yeah, so I may be getting a little excited here!

I actually made a ticker to count down to my laser surgery and balloon dilation to fix this pesky blockage in my throat! I haven’t made a ticker since the last time I was pregnant, and the fact that I wanted to made me laugh.

But it’s such a neat thing to be looking forward to! Because it’s been five years–at least–of huffing and puffing. Of embarrassment over my loud wheezing and stridor. Of my entire life slowing down to the point that I now have to sit down and catch my breath after making the bed.

I realize that, unfortunately, the scar tissue will most likely grow back. A lot isn’t known about idiopathic subglottic stenosis because it is a rare disease, but the majority of people need repeat dilations, sometimes even just a few weeks or months after the initial treatment. A lot of people go on to need tracheal resections, a really complicated procedure that I don’t even want to think about yet.

Because right now, today, I just want to enjoy the anticipation of breathing easily again! Even if it’s short-lived, it’s going to be amazing to give up this struggle, to lay this burden down a while, to feel a degree of normalcy again.

I hesitated before writing this post, because nobody really wants to listen to someone blather on about health conditions. But we were talking on my ISS support group last night and one of the ladies said that we all bear the responsibility of spreading the word about this condition as often as we can. I went undiagnosed for so long and nearly every person in that group of 1,500+ has the same story.

People don’t know about this condition. DOCTORS don’t know about this condition. It bothers me to wonder how many thousands of people are walking around suffering like I’ve been, misdiagnosed with asthma and who knows what else because nobody ever thinks to have an ENT look down their throat!

So here is my PSA of the day: if you or someone you know suffers from the following symptoms, see an ear-nose-throat specialist as soon as possible:

  • Shortness of breath during exertion and sometimes at rest
  • Noisy breathing, also known as stridor
  • Cough
  • Voice changes
  • Feeling of phlegm “stuck” within the airway

Because, breathing. It’s kind of important.