Defective? Maybe. But Determined.

If you’ve been around me much at all in the last couple of years, you may already know about my lingering and very stubborn breathing issue.

It’s pretty lame, actually. Me, all huffing and puffing and not getting to blow down one. freaking. house. in the process. No pigs, either.

I was actually rather reticent to post about this, but I’ve had lots of notes and messages wondering why I’ve been quiet lately, and some people have seen glimpses of this at events and such, so I thought I’d post an update for those of you that are interested. And my thanks to each and every one of you. I’m pretty much of an oversharer…until it comes to stuff like this. So it’s awkward and weird, but I also feel like I owe folks some updates. I’d want them if it were my friend or colleague, so here I am.

The short version: I get frighteningly short of breath when I do, uh, pretty much anything other than sitting or sleeping.

Over the last 18 months, (this all started rather suddenly in about June of 2011) my Chicago doctors have looked at all the obvious things – lungs, heart, ears/nose/throat, allergies, you name it – but could come up with nothing.

So, this last couple of weeks I’ve enjoyed an extended field trip to the excellent Mayo Clinic in balmy Rochester, MN to investigate further. And investigate we have.

After all these tests and things so far, we know a lot of what it’s NOT (like asthma, allergies, anxiety, COPD, neuromuscular disorders, malaria, dragon flu, Zimbabwean Lung Malfunction…I know that has to be a thing, right?). Which is helpful, slowly, as we cross things off the list. It’s also frustrating and scary because there are no obvious answers. Sometimes I’m pretty sure not knowing is worse than knowing the worst.

What we do know is that my lungs aren’t functioning properly. (Kind of duh, but it’s actually significant to know that much after lots of swings and misses in the world of trying to diagnose this thing so far).

I have what’s called a restrictive lung disorder, potentially what’s called an interstitial lung disease. My breathing equipment is being stubborn and not taking in enough air and oxygen, nor are my lungs distributing oxygen properly to the rest of my body. Upon exertion – we’re talking something as dumb as walking across the house or up a few stairs – my arterial oxygen levels plummet into rather freaky and abnormal territory until I stay still again. (Needless to say, I’m not running any marathons in the near future.)

What we unfortunately don’t know yet is WHY all of this is happening. So the search will continue.

Whatever it is, it’s “atypical”, meaning that we’ve pretty much ruled out the big, obvious stuff, and I don’t fit the typical picture of much of the less-obvious stuff either.

For fuck’s sake, right? Of all the ways I’ve intended to try and be interesting and unique, this is not exactly what I had in mind.

There are some other things amiss, which may or may not be related, and I won’t launch into them all here. But we’re looking at everything, very thoroughly and systemically, and I have some of the top pulmonologists and rheumatologists in the country (if not globally) working on my case as well as a team of additional doctors of varying specialties helping to connect the dots.

And, hey! If they don’t have a name for it, maybe Naslund Syndrome will be a thing in medical journals and stuff. And the most successful treatment will turn out to be copious amounts of wine, Downton Abbey and 80s music.

What I *can* tell you is that I’m over here, working daily on killer SideraWorks stuff (seriously, our firm’s work makes me so excited), being a mom and a business partner and all that jazz, and I’m confident that we’ll get to the bottom of this eventually. I’m stubborn but an informed patient with amazing friends and family to support me, I feel largely pretty okay, and I’m determined not to quit until I know what I’m up against, whether we can fix it, and if not, how I kick its ass into submission and work it into the background of my daily life. I have stuff to do, dammit.

So if you see me out and about carrying my oh-so-awesomely-stylish oxygen thingie like a boss, come and give me a hug and a high-five. (I also accept donations of aforementioned wine).  I’m not contagious or breakable, just a little defective right now.

With a little luck, we’ll get all the parts in working order very soon, and I’ll keep y’all posted on our progress.

Thanks again for all the concern and well-wishes. I had no idea you people paid so much attention to who was or wasn’t on Facebook these days. Jeez. I’m not judging. Really. I swear.

Until the next time…

Love and rockets,
Amber