Sunday, July 28, 2013

If we could...

I think I'm a tad late to the party, as I'd seen this video posted a few times and hadn't taken the time to watch it myself (who has four + minutes these days?)

But... I finally did. And it is so worth posting here.

Why? Because I live parts of this every day. And if I'm not living it, someone I love is. I was a bit shaken at how many of the scenarios I am intimately familiar with... or have considered, or will have to consider.

One thing you can't escape about this disease is the humanity of it all. And I feel that those on the clinical side miss that sometimes. I don't blame them, actually. It is exhausting as a patient. I can only imagine that as a professional dealing with us you must shut yourself off from crisis after crisis at some point, and just respond to the routine with precision, maybe even a script.

But the person on the other end of that script and protocol? That's me.

So I really want to sit every medical professional, care provider, and industry person down who has treated me like one more on a list for the day and remind them... it's me. Whatever you say... I am going to hear terrible news that is going to wreck me for a week, or wonderful news that is going to keep me floating for days. What you say is going to matter. A lot.

Whatever it is, I'm going to be in front of you with a straight face, jot some notes, ask some questions, and then I am going to go into the parking lot or hang up the phone, and really feel what just happened, and over the next several days, I am going to re-live it, and maybe wish I had reacted differently.

I have my major check-up coming up this week. Just a half day at the hospital for a round of tests - not much compared to what some go through. But I can tell you right now - I probably won't sleep much the night before. I never do. Anxiety? Anticipation? What will it be this time? More good news (gosh, I hope so), or bad news I wasn't expecting? What will the following days and weeks and months look like? Because everything that happens in those few hours will set the tone for what I experience next.

Wednesday, July 17, 2013

Then and Now

Sometimes it is hard to remember my world before I had a growing list of friends waiting for lung transplants because the disease we share took too much of a toll.

What was life like before I (willingly) dedicated hours to fighting different fronts of this disease, the personal and the ones that impact my community? What was life like before I had to take medication four times a day, constantly having a near-miss on a dose as hours speed by, as only they can when you're on a tight medication schedule (Four hours gone by already? Crap!).

Was there a time when exhaustion wasn't the big thing I simply can't overcome on some days?

I'm not sure I miss those days, exactly. Life is still oddly charming. I say "oddly" because... well, this whole journey is in fact crazy.  I guess with a different response, I could loose sight of the many charms and blessings that still come in spades. But, I'm sitting here tonight with so much on my mind, most of it pretty stressful and PH related, and realized I barely remember life "before". Before PH.

I don't think I'm the same person now - for better or for worse. A shorter fuse sometimes, maybe. My tolerance for bullshit is remarkably lower. And a much deeper sense of peace on other things. Because, let me tell you, "2 - 5 year survival rate" puts things in rather quick perspective... you learn to let the little things slide. And the big things? Well, those feel really big.