Down the Wrong Path

I didn’t doubt the asthma diagnosis for a minute. In fact, I had secretly suspected asthma was the issue.  Having asthma made a ton of sense, I have a family history of it and, well, my current issue involved difficulty breathing.  The confirmation of my asthma suspicion was a bit disturbing; a chronic disease is never good news, but then again sometimes just having an explanation for how you are feeling can be somewhat comforting.  With a diagnosis you have the chance to work on a solution and to improve things, hopefully.  Maybe get back to my past life of being winded walking up stairs rather than from sitting and reading a book.

After deciding upon an asthma diagnosis, Dr. B put me on some asthma medication, and prescribed an emergency inhaler.  Now that I think about it, Dr. A in the Midwest gave me my first emergency inhaler.  She was an allergist (she was actually many allergists, it was a training hospital so I saw a different doctor each appointment.  In my mind they have all sort of blended together into this harsh-speaking, intimidating yet exhausted looking, brunette woman) and when I complained of difficulty breathing when I would run or climb stairs, she said that there didn’t seem to be anything wrong with me breathing wise, but that perhaps it was an allergy issue because I would only run outside in the park.  The inhaler never really helped so it ended up at the bottom of my sweaty duffel bag forgotten.  Anyway, Dr. B put me on some asthma medication and gave me an emergency inhaler and sent me on my way. 

I tried the medicine for a few months, knowing that these things can take time, before I decided that things simply weren’t getting any better.  In fact, they were getting much worse.  Dr. B decided that we should try some different medicine.  This medicine ended up not working so well because not only did my breathing not seem to improve at all, I also became depressed and stopped caring about schoolwork.  Or leaving the couch.  Luckily it was not around final exams and after forgoing the medicine I was able to catch up on my studies.  I went back again to something new.  This time I saw Dr. C because Dr. B was not available.  Dr. C tried yet another prescription.  It maybe sort of felt like it was working.  I guess sort of.  I wanted it to work really badly, particularly because I was told that it was the best option that existed, and sort of the last line of defense.  And, on a side note, did you know that best options are quite expensive?  They are.  Very expensive, even with insurance, particularly with crappy insurance like I had.  As an unemployed student living off of my savings account, paying for high-end, fancy-pants asthma drugs wasn’t really something I could afford, but I paid the money without hesitation.  I wanted so badly to be able to breathe.  

The Back Story

So I should really start by explaining that I’m one of those kids.  You know.  One of the classic nerd types: near-sighted, allergic to everything and wheezy.  I’m also the type to read textbooks for fun (which is awesome when they are later assigned for a class) and spend hours building the best spreadsheet ever for [insert topic here].  So basically I’m doomed to the full lifetime nerd experience.  Except, I wasn’t always someone who had difficulty breathing, that nerd characteristic grew with time.

 I don’t really know when it started to become an issue.  I mean, though I would never have qualified as a particularly athletic person, it always seemed that I ran out of breath way before my the rest of my body was feeling tired.  I’ve always been drawn towards activities that were individual and allowed for me to go at whatever pace I could handle.  During undergrad, seven or eight years ago at this point, my roommate would tease me for being winded and always coughing, clearing my throat.  While I can’t tell you when it started, I can tell you when it started to really impact my life. 

About three years ago now, I worked in an office building on the fourth floor.  I would make a point to take the stairs rather than the elevator, but it always seemed like I was painfully winded by the time I made it up the four flights.  I assumed it was due to being out of shape, but no matter how often I took the stairs, I was terribly winded by the time I got to my office.  So winded that other people would look at me with concern and I couldn’t speak for several minutes.  That was when I first heard the wheezing sound.  No one else could hear it. I’d try to point it out to people, but everyone just assumed I was being dramatic.  Which I don’t blame them for because I am the type to spontaneously burst into song and prance around the cubicles.  To me there was definitely a wheeze, though I now know it is called “stridor breathing”.  It happens on the inhale more than the exhale.  It feels like breathing through a plastic bag, like there is a film you are trying to breathe past.  Then you clear your throat with a cough.  It is a vain attempt to clear a passageway because you can’t get the plastic to go away.  The sound is how I imagine the plastic taut against your windpipe sounds as air passes around it.  I use a plastic film as a bad analogy, but I have yet to come up with anything better.

Wheezing while walking up four flights of stairs is annoying, but it isn’t really an impact.  An impact on one's life is living less than half a mile from school, an eight minute walk, and taking fifteen minutes sitting on your couch gasping for air to recover.  That started to happen about a year and a half ago.  At that time I had moved from the Midwest (I love you Motherland!) to the Pacific Northwest.  I’m very allergic to grass and have always had intense seasonal allergies.  Well, apparently, I moved to the largest grass production area in the United States.  When I was first told this, I assumed they meant grass as a slang term for marijuana.  Which isn’t my scene so I didn’t think much about it.  I later learned they meant your standard lawn, Kentucky Blue sort of seed.  This is relevant because my new city also has the prestigious honor of being known for its high incidence of allergy-induced asthma. 

Again things are hazy.  I moved to the west coast for a grad program and immediately began lugging heavy books to and from school.  My allergies were out of control and I was rocking the runny nose and watery eyes that are oh so attractive.  And my daily walks just sort of got harder.  When I finally realized that there was a real issue, I went to the health center at my University for help.  I want to make perfectly clear that I received excellent care there.  Due to my allergies and the history of the area, it only made sense to diagnose me with asthma.  

Pay it Forward

Recently, I received a rather uncommon diagnosis.  One of those odd sorts of medical trivia that send you on a scavenger hunt of tests, diagnostic procedures, specialists (eventually sub-specialists) and an endless parade of waiting rooms with bad magazine selections.  I came home from my various appointments armed with what bits of the lingo that I could recall or at least had thought to scribble down in my ragged notebook, phonetically guessing at the spelling.  Ever the diligent researcher, I would immediately march over to my laptop and begin to google and wikipedia search every tidbit (because everything found on the inter-web is completely accurate.  Right?), looking for some information that would help translate the medical talk I had heard to something that I could identify with, a personal example of the situation.  Someone who could describe how things felt, physically and emotionally, beyond the carefully metered speech of my healthcare professionals.  Usually in my web searches, I would stumble upon some random website, or blog or other account of whatever I'm looking for.  These provide links to other sources, and my curiosity is eventually satisfied.  This time all I could find were definitions and textbook excerpts that left me with nothing. Well, nothing except for very graphic photos and descriptions of things gone wrong.  Not helpful.

But then I received an e-mail from a stranger.  Apparently, my mother's co-worker's child's teacher, Dee, had the same diagnosis.  Random.  Dee e-mailed me because she wanted to be resource for me if I should happen to have any questions.  We chatted on the phone and it made things a million times better because I had that first person story.  I had the resource of information that I could go back to if I have any questions.  That is a wonderful feeling.  Thinking about it, it made me want to be able to be there for someone else if they should be in the same situation.  But the chances of meeting someone by chance aren't super likely.  So I figured, for the first time in my life, I'd write a blog.  That way if someone else has sub-glottic stenosis, they can search google, and find a personal story mixed in with all of the medical definitions and kind of icky photos.

So, I plan on writing about my situation as things progress.  I suspect that the act of writing stuff down is somewhat therapeutic in its own right but I'm hopeful that it will be of actual use to someone else who is in a similar situation.  Um.  So I guess here goes . . .