Tuesday, May 22, 2012

My True Story

Several years ago I once went nearly 6 months without seeing, calling, or talking to my doctor. Now, for a normal person this probably doesn't sound like all that big of a deal -- maybe it even seems like a relatively short period of time to coast along without care -- but for someone with CF, and particularly for an adult with CF and only moderately high lung function, 6 months is a HUGE deal. Even now, quite a long time later, I'm still not exactly sure how this happened. When I try to piece it together objectively my brain comes up with about a million wholly unsatisfying and inadequate justifications, ranging from the fact that I was busy with other things to the fact that I was moderately confused about how to handle this new experience known as "adult cystic fibrosis care."

And yet, when I'm being wholly honest with myself, the real fact of the matter is that there was no one simple answer for why a smart(ish), well educated, generally responsible young woman would make that sort of bad decision and take such a huge risk with her health. It was actually more like a nasty cycle of bad decisions and worse responses that ended up looking something like this:

Step 1: miss doctor appt for some relatively forgettable reason or another;
Step 2: procrastinate rescheduling appt to the point where rescheduling becomes embarrassing;
Step 3: start to feel sick because of lack of care;
Step 4: buy into ridiculous logic that things can and WILL get better through sheer force of magic -- decide it will be less humiliating to show up at doctor's for missed appt if you wait until you start to feel better;
Step 5: willfully ignore symptoms while trying desperately to regain ground by, say, adding in extra vest treatments;
Step 6: feel like utter failure, get scared, and procrastinate making appt because of such;
*repeat steps 2 through 6 as needed.*

Looking back at this list even years later still leaves me feeling incredibly frustrated. For those who might be wondering, no, it didn't end well. In fact, it ended with me in the hospital, on O2, terrified, angry, and generally as sick as I had ever been in life. Luckily, through a grace I'm still not sure I deserved, I managed to regain the lung function I lost during that period. Even luckier, and through a grace I am absolutely positive I did NOT deserve, my doctors decided I was still worth their treatment, their time, and their trust. Just another reason out of many that I adore my medical team.

Less lucky, however, is the fact that patterns have a way of repeating themselves.

No, don't worry, I'm not saying I didn't learn my lesson and learn it well -- I think I could count on a single hand the number of doctor's appts I've missed since that time, and each of those was for a very legitimate reason. I know mistakes happen and I've done my best to forgive myself for that one, but you can be darn sure I'm never going to put myself, my team, or my family through that again. Even thinking about missing an appt with my transplant team leaves me literally itchy at this point, no joke.

What I am saying, though, is that I still find myself occasionally trying to run away from my mistakes, my procrastinations, or even just my own humanity rather than pausing long enough to admit I was wrong and fix the problem. Whether it's a friend I neglected to call back or an unforgivable length of time between blog posts (ahem, ahem), I sometimes find that once I make a mistake it can be oddly tempting to look the other way -- to chalk it up to a busy schedule or a lack of time or even just something as simple as writer's block -- even when I know that by doing so I'm only going to dig myself in deeper.

So I'm choosing right now to end this latest cycle. And granted, there's a huge difference between a blog post and a doctor's visit, but I'm guessing the principle is broadly the same. My hope is that by admitting my problem, facing my fear, and sharing my story I can, at the very least, manage to find my way back to everything I love about this blog. My even greater hope is that you all will stick around with me to watch it unfold.

Mistakes and all.

xoxo beautiful people,


  1. I needed to read those words tonight. Thanks and welcome "back" ;-D

  2. Wow, your story is my story, right down to the neglected blog. I call it my Scarlett O'Hara syndrome, "I can't think about that today, I'll think about it tomorrow."

  3. I'm here; will stay here; and so glad to have you back beautiful and smart person.

  4. I do this all the time. Calling people back. Making non important appointments. I forget and forget and then remember and then feel embarrassed and then procrastinate and then finally suck it up and give in because waiting even longer is just not an option.

  5. Um yeah slacker. Kidding. I'm way overdue on the blogosphere too. Thanks for the reminder :) Hope all is well with you Piper!

  6. Thank you, Piper, for that inspiring story. A lot of people consider their health to be least of their priorities because they are burdened with work, expenses, and other things. But we must remember that we should take care of our bodies. Heed the warning signs and symptoms. And don’t be scared to ask for help especially, if it’s about your health. Trust your doctors. They know what’s best for you. Good luck, and I pray for a smooth and quick recovery.

    (Chalice Lindgren)

  7. I must say I have repeatedly checked your blog for a recent post and finding none was beginning to worry that something was seriously amiss. Glad to see that you are still going strong and attempting to be more current. Take care.

  8. eel like utter failure, get scared, and procrastinate making appt because of such;