5. How I combat anxiety from living with a rare lung disease

With my history of lung collapses due to a rare lung disease, LAM, I now have a very real fear of another collapse, especially when flying.  Cognitive reasoning tells me that the chances of a collapse are very low now that I have most of the surface area of my lungs firmly attached to my chest wall and that if there were to be a collapse, it would be minor, say 15%.  But there’s no room for reasoning when anxiety takes over, which is why I’m armed with Diazepam (anti-anxiety medication) when I fly.

Last summer, my family and I were at Charles de Gaulle airport in Paris, waiting to check-in our suitcases at Delta, when it occurred to me that I had packed my bottle of Diazepam in one of the suitcases instead of my carry-on backpack.  I could feel my anxiety creeping in.

It just so happened that Delta pilots were set to go on strike the next day, and with summer holidays in full swing, the airport was very crowded.  So in other words, I now had a very large audience who was about to witness an anxiety attack.  I starting feeling a little unsteady as I leaped over our collective carry-ons stacked on the ground in order to get to the suitcase, which was being prepped for check-in near the conveyor belt, otherwise known as the point of no return.  I pulled the suitcase off the scale as the Delta employee waved her hands at me.  Did she say something? Or was that my husband? It all sounded like white noise as I frantically laid the suitcase on the floor and attempted to unzip it.  Where the heck was the zipper? Breathe.

So if you’re anything like me, the contents of your suitcase on the way back home from a trip are in a state of chaos.  There’s no separation of clean versus dirty, no ziplock compartmentalization of items, souvenirs are wrapped in local newspapers, socks and underwear are everywhere, you get the idea.   I had to sort through all that in order to locate what felt like a needle in the haystack and in fear of those odds, I ripped apart the contents of my suitcase with no regard to modesty.

I eventually found the ziplock bag with my Diazepam – sweet triumph – and while I stashed it away safely in my backpack, I looked up to see all kinds of eyes on me.  Some looked amused, some were curious, the Delta employee looked annoyed, my kids looked embarrassed, and then there was my husband, who looked concerned because this was the first time he caught a glimpse of my anxiety.  “It’s all good” I said, and I meant it as I picked up the contents off the floor and stacked them back into the suitcase in their rightful state of chaos again.

Aside from flying, I don’t get too many episodes of anxiety any more.  I think it’s because I’ve gotten better at tuning in to what’s happening around me that’s causing it.  Sometimes just acknowledging the fear or uncertainty and then putting it to words makes it a little better.  So here it goes.  I’m afraid of my lung collapsing mid flight, especially a transatlantic one.  I’m afraid my oxygen levels will drop and something unknown, possibly horrific, will happen to my body in reaction to it.  And I’m afraid my kids will have to witness it all.

Outside of flying, I’m afraid of what the future holds.  Many women with LAM have tumors on their kidneys and fluid build up in their chest and abdomen.  For some, their disease progresses fairly quickly, causing them to require supplemental oxygen, and even a lung transplant, which in my case can be tricky given that my lungs are attached to my chest wall.  And while there is an FDA approved immunosuppressant drug now available to stabilize lung function, there is a percentage of women with LAM for whom this drug has no effect.   Plus, this drug has numerous unpleasant but tolerable side effects and patients have to be on it for the rest of their lives.  At the end of the day, there is no cure for LAM.

And if putting expression to the fears and uncertainty doesn’t help talk me off the ledge, then I dig deep into my bag of tricks.  I go for a walk with my dog, or if my body is cooperative, I run, or kayak or bike, or anything to get me moving, even if that means vacuuming the house.  Because you see, in that space where I’m moving and pushing myself to my physical limits and sometimes beyond – and gasping for air – is where I’m most reminded of the gift of breath and feel immensely grateful to be living despite all my fears of what the future holds.  It’s also where I feel a little defiant of LAM.  And there’s no room for anxiety in gratitude or defiance.

 

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