A Most Unlikely Diagnosis

If you’ve been around me in the past few years, you’ve probably noticed me wheezing.

If you’re really close to me, you’ve surely noticed that I’m not as active as I used to be. I don’t go for walks anymore. I’m now one of those annoying people who will drive around five minutes just to get a closer parking spot. Amusement parks are my worst nightmare, but sometimes I suck it up and do it for the kids anyway.

Even though I’ll spend most of my time on a bench because breathing is such a pain in the butt.

Heck, I struggle to breathe while carrying laundry from the bedroom to the kitchen. I huff and puff when making the bed. Forget vacuuming and mopping. If you come to my house, you’ll see…Maid Mama has clearly been slacking off for a long time now, and ain’t NObody been picking up the slack.

And elevators? Oh my word. The most embarrassing places on the planet. Locked up in a silent box with strangers while I sound like Darth Vader nursing a bad case of bronchitis. People either ask if I’m OK or they stare at me wide-eyed, clearly mortified at the thought of catching whatever I’ve got.

This has been going on FOR YEARS. Years. I first remember it alarming me when I was on a walk with my friend Lori C. I could still walk a whole mile without sitting down back then, but I sounded terrible. At her advice, I made an appointment with my GP, who diagnosed me with exercise-induced asthma.

I think it was a placebo effect that the inhaler seemed to help a little, for a little while. I kept refilling the prescription and thinking if I could just get in better shape, if I could just lose some weight, I’d feel better. That’s what the doctor said.

About two years ago, I finally went back to the GP and said, “Look…this isn’t working. What’s next?” And he’s like, well, you don’t sound like you have asthma after all. You should get a cardiac and pulmonolgist work-up.

So I did. Heart checked out fine. Got a major long lecture on how I would breathe easier if I just lost weight. Felt shamed into believing that I was a lazy sloth who was reaping what I’d sown.

Pulmonologist did a sleep study and said I have sleep apnea. I never followed through on getting a C-pap. I just hated the way it felt, like trying to exhale into a full-blowing hair dryer pressed into my mouth. Every night since has felt like a gamble, but I don’t know how I could sleep at all that way. I asked him why sleep apnea would make me so breathless during the day, when doing even the simplest tasks. He said it was obesity. Obesity does all of that. My body wasn’t designed to carry around all this extra weight. Like, duh. (OK, he didn’t say “duh”, but I think he might’ve if we’d known each other better.)

So, nevermind that I’ve been obese basically my entire life, except with one short stint of bulimia in high school, and up until a few years ago, could breathe just fine. But hey, being fat IS the root of all evil. So I believed that my huffin’-and-puffin’ was entirely my fault.

Well. I found out today that it’s not.

And I’m not going to lie–my eyes teared up when the doctor told me that I wasn’t to blame.

I have subglottic stenosis, possibly caused by the autoimmune problems I’ve had since 2003. A lot of times, they don’t know why people have it. It’s basically a narrowing of the trachea below the vocal cords that makes for noisy, difficult breathing. He ran a camera down my nose and I got to see the whole thing. Pretty interesting stuff.

He seemed surprised that I’ve had this for years without it being diagnosed. But he did say that it’s a relatively rare condition and after I have a CT scan next week to see how bad it is, I’ll probably be handed off to the specialists at Emory. From what I’ve read, it’s manageable through surgery and dilation. It can recur and require more extensive surgery, but hopefully it won’t get to that point.

Now…I know this is long. But bear with me. You have to hear what led me to go to the doctor now, to begin with. I had kinda resolved myself to just having to live with this until it landed me in the ER or something.

I would totally have not been at the ENT today if I hadn’t broken my own rules last week.

It’s my policy to stay out of the living room during the day. The computer is in the dining room, my two homeschooled kids do a lot of their work at the table, and I’m not into any daytime TV shows. So there’s really no reason to be in the living room. My recliner (AKA The Chair of Doom) must be avoided at all costs if I don’t want to nap the day away. I mean, if my butt settles down into those sweet, soft cushions, I’m OUT. It’s over. (Must be from all that obesity and apnea…)

But…one morning last week, I made breakfast and I just wanted to sit with my feet up and chill, maybe watch something on the DVR while the teenagers were still sleeping. I clicked through the guide and saw that The Doctors was on next.

Y’all, I never watch that show. Ever. No offense to those who do (like my Mom–she’s their biggest fan) but it’s just not my cup of tea.

But I felt this unmistakable urging to click on it. Which I immediately suppressed and kept scrolling to find something I liked better.

Now, I’m not one who is quick to say “God told me” to do something. If there’s anyone whose mouth I don’t want to put words into, it is His. But I couldn’t find anything to watch. And that still small voice was still nudging me: “Go watch The Doctors.”

So, because I’m far too often like this…


….I said, “Oh, alRIGHT!” and clicked back over.

And this is what I saw! (Check it out!)

And I was like, “Oh my gosh…that is ME!”

And I joined a Facebook group for those with ISS, and the more I read, the more I felt like I was reading my own experiences. But I didn’t really participate in any discussions because those “it’s all in your head…it’s your own fault” conversations kept creeping into my thoughts and I didn’t want to say that I had something that I might not actually have.

But I knew that I had to find out.

I’m so glad that I did! I’ve been needing to schedule an elective surgery for a scar-related hernia and the doctor told me today that I cannot be intubated until this is fixed. He just said, “That would…not be good.”

If Zach hadn’t had his accident, I would’ve had that operation this month. And I’d have been intubated and who knows what tracheal damage that would’ve entailed.

Thank you, Lord.

Thank you for everything. For luring me to my Chair of Doom at 10:00 a.m., for pushing me to watch a show I never watch, for leading me to a kind and compassionate doctor. For letting me be alive and OK. For giving me answers.

For reminding me that You move in mysterious ways.

And for the soon-coming gift of breathing freely again!

OH. MY. Goodness! I. Cannot. WAIT!

See ya later, Darth Vader!


9 replies on “A Most Unlikely Diagnosis”

  1. That is awesome news!! I once had a conversation with my midwife who was shaped like me–round. We wondered what doctors tell skinny people who are sick!!

  2. Very good read! I just joined the Facebook group. I was just diagnosed last Thursday and then taken in for surgery the next day. Not a lot of time to absorb it. This group has been helpful. God bless you and my daughter always saud I sounded like Darth Vader. I never heard it because I thought it was normal or part of my asthma (that I was misdiagnosed with of course)

  3. So happy for you! BTW do you remember when I was healed of the dreaded and “incurable” sleep apnea???

Comments are closed.