blog food: thoughts on asthma – before diagnosis

Oh my gosh!  What’s that up there?  Blog food?  What’s that?

Oh, come on.  You remember blog food!  When I would ask you, the lovely readers of this blog, for stuff you wanted to read about from my perspective.  Ringing any bells?  Good.

Elisheva gave me the idea to write about what my thoughts on asthma were before my diagnosis.  This is a really interesting topic to write about—thanks Elisheva!

From my earlier years, I don’t remember much about having any sort of thoughts on asthma until I was in grade five.  One girl that I became friends with that year had asthma.  This was my first introduction to the AeroChamber, which she carried around and used religiously.

However, I was still one of the ones who thought asthma was just a blue inhaler.

Once I hit my teen years, I kind of determined that I wanted to do something-or-other involving healthcare.  At this point, I kind of learned a bit about a lot of different medical conditions, everything from asthma, CF, diabetes, allergies, eating disorders, etc.  But, still, you don’t really know anything at all until you deal with it every single day.

I think my revelation about the real treatment of asthma was probably some sort of simple sentence in a family studies textbook.  Probably a sentence like “Asthma is treated with reliever and controller medications to ease symptoms”.  Because, nobody knows about controller medications unless they really hunt out the information.  I mean, why would they?  Not really necessary unless you’re an asthmatic or a caregiver of an asthmatic.

So, I was uneducated about that, as well.  Blue inhaler, spacer, and take a couple of hits when you’re having trouble breathing.  Not such a big deal.

 

If back then I could have spoken to my current self, this is likely what my current self would scream in response to that:

“There is WAY more than a blue inhaler.  There are various other inhalers.  And inhalers that don’t even look like what you’ve seen before.  And there might be pills.  And there’s way more than the medicine.  There’s a whole other emotional side of having asthma that nobody really talks about.

There’s frustration.  Lots of frustration. It seems like you and your body (who, are supposed to be a team, I might add) are suddenly against each other.  Your lungs try to gain control, and the rest of you tries to gain control over them.  And, it’s a never-ending battle.  You have good times, and you have bad times.

However, the bad times?  They make you appreciate the good times even more.  You will gain perspective.  And ultimately, you can do it."

Your doctors will frustrate you, because they don’t get it either.  Prepare yourself.  They’ll say things like ‘anxiety is causing your dyspnea’ and ‘there’s nothing else I can do for you’ and ‘you’re on a lot of medication right now’.  And, they too, don’t get why you’re the weird mild-ish asthmatic that has symptoms way more than most other mild-ish asthmatics they’ve encountered.  They don’t know why your lungs are so quirky, but they are.

Your asthmatic friends?  They respond so well to little medication, that you’ll feel strange that you’re on so much, and still flaring more often than they do on their limited medication.  You’d think it would be easier to take your medication around your asthmatic friends?  Wrong.  Because you don’t want to seem like the sick one in comparison. 

Your parents don’t get it either, obviously, and can be less than sensitive when you’re flaring. 

Be ready for all this stuff.

But, you will get through this.  You’ll start a blog to get some of that frustration off your chest (No pun intended!)  Way cheaper than therapy (and way cheaper than all the drugs you’ll end up putting into your body every, single day for the rest of your life.  That is, if you didn’t have pharmaceutical coverage.)  You’ll meet people, lots of awesome, caring people, who will support you, celebrate with you, and share in frustration with you.  And you’ll appreciate them so much, because after your first handful of frustrating months where your lungs aren’t happy, and you’re not happy with them not being happy, you’ll need support that people in your life just don’t know how to give you, because, despite how common asthma is, if you don’t fit the asthma-mould, people just don’t know what to say.  And you need someone who, even if they don’t know what to say, that allows you to vent to them.

You’ll connect with them on Twitter, too, for nearly instant support.  Oh, what’s Twitter?  You’ll figure that out in about six months . . .”

 

So, y’all, it’s your turn!  For those of you who remember pre-diagnosis, what were your thoughts on asthma before you were diagnosed?  And, what should I write about next Sunday?  Leave a comment below answering both!