Saturday, March 12, 2011

Living with a chronic disease

I was diagnosed with asthma at around six years old.  From everything I was told back then, I would most likely never outgrow it.  The doctor's told us that you have a much better chance of outgrowing asthma if you are born with it, then if you develop it later on in life.  This is true for me.

Growing up my asthma would flare up constantly, especially in the winter months.  As soon as that first blast of frozen winter air hit my lungs they shut tight.  I always had to cover my mouth and nose with a scarf or high collar on my jacket and breathe in the warmed air.  I remember one time my family was ice skating on a frozen pond across from my grand parents house.  My cousins and I were flying all over the place and I was breathing heavily from the exercise.  My jacket collar got wet from my breath constantly being blown against it and I didn't like the way it felt on my face so I did what any stupid kid would do.  I said "screw this!" and I unzipped my jacket letting the cold air blast me in the face and lungs.

Within minutes I couldn't breathe.  I was wheezing, coughing, and struggling to take in a breath, but I was stuck all the way on the other side of the pond.  I  remembered that my mom had made me put my rescue inhaler in my jacket pocket before I had taken off to skate, so I grabbed that, put it to my lips, pressed down on the button and sucked in, but nothing would come out.  I tried again and again getting more panicked with each try, feeling hot tears come from nowhere stream down my cheeks.  The winter air had frozen the inhaler and prevented it from working.  Crying and gasping for air, I slowly made my way back across the pond and saw my mom and uncle smiling and waving at me, thinking that I was having the time of my life.  As I got closer they realized something was wrong and hurried onto the frozen pond to help me.

I gasped out to them over and over, "I can't breathe, I can't breathe, my inhaler won't work!"  My mom made me sit down on a tree stump and my uncle took the inhaler and started shaking it and rubbing it briskly in his hands, blowing his own breath on it to warm it up.  All the while my mom is trying to calm me down telling me to relax and try to take slow breaths.  (On a side note here: for people that don't have breathing problems, telling someone who is in the middle of an asthma attack to calm down and breathe slowly is like telling someone who has just fallen from a building to just calm down, flap your arms, relax and you'll fly.  It doesn't work.  They will never understand just how scary that feeling is.

 For those of you who would like to do a simulation exercise, try this sometime:  put a plastic drinking straw in your mouth, close your lips around it making a tight seal so that the only air you breathe in and out comes from the hole in the straw.  Start walking around like that breathing in and out.  Now take it up a notch.  Go outside and start to run, keep breathing in and out through that tiny little opening in the straw and see how long you make it before you spit that stinking straw out and draw in a nice big gulp of refreshing air for your now burning lungs.  That my friends is as close as it gets to understanding what an asthmatic could feel like at any given time, and without being able to get immediate relief.

My uncle did eventually get my inhaler warmed up to the point where it would work again and I took several puffs over and over which helped relieve the feeling that I had a ton of bricks sitting on my chest.  My mom dried my tears and told me everything was going to be just fine, but damn it, I was pissed!  I couldn't even enjoy skating with my family without looking like the freak who had to come running back.  I don't even remember if I went back on the ice that day.  I just remember sitting on that stupid tree stump feeling embarrassed.

Over the years we were sent to various pulmonologists, allergists, pediatricians, you name it.  My poor parents spent a small fortune on my asthma medication.  I remember my mom devoted an entire kitchen cabinet to house my meds alone.  The worst part was that the treatment of asthma is not a sure thing.  What works for one person might not work so hot for another.  It is a constant, EXPENSIVE,  trial and error type of treatment plan.

We learned that I was allergic to pretty much everything,  all animals, trees, grasses, pollen, ragweed, dust mites, mold, you name it, I couldn't be around it without it triggering my asthma.  I can't tell you how many sleep overs my poor dad had to come and pick me up from in the middle of the night because I just couldn't breathe. (Thanks Dad!)  After a while I just gave up trying to see if I could make it through the night.  After  every sleepover invite, I  followed up with, "Do you have any pets?"  And depending on the answer, my decision had already been made for me.

Despite taking daily preventative medication, I did end up in the hospital on several occasions.  The first time was very scary, but the the trade off of being able to breathe was better, so I sucked it up and got through it.  After that I just got used to it.  I even knew when I would be hospitalized.  There they would load me up on IV steroids overnight and from there I would miss a few more days of school at home sucking on my peacepipe, (aka a Nebulizer), every couple of hours to try to keep my lungs from closing up on me again.  At one point I came home from the hospital on so much medicine that it was actually making my physically ill.  I was afraid to go to sleep that night because I thought I wouldn't wake up.  My dad sat on my bed and told me everything was going to be ok and that he never would never have let me come home if he thought my safety was in jeopardy.  He told me to close my eyes and trust him, that I would feel a lot better in the morning.  I remember closing my eyes, thinking, "God I hope he's right" and then I fell asleep.

To be continued...

1 comment:

  1. Thanks for this post! My daughter has asthma (age 7), and we are *struggling* through managing it.

    I admit we try to tell her to calm down in the middle of a fit, but I know that it is so hard! Ack...

    Anyway... I found you through the blog party, and I"m glad I did.


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