"Comfort Within The Uncomfortable" by Elena Goodrow

A growing list of symptoms, concerning test results, another round of antibiotics, insurance denials, and lots of sitting in city traffic… sound familiar?

Maybe not the sitting in traffic part, that’s just because my doctor’s office is in downtown Atlanta.

This has been my world recently and I know that many of you can relate. It’s also okay if you don’t relate at this moment in your life, because that’s the beauty (and fear) that envelops our lives. The fact that everything changes and will always be filled with uncertainty.

I have always felt unusually comfortable in medical settings. While my peers discuss their fear of going to the doctor or getting their blood drawn, I happily oblige and chat with the nurses while they poke me many times. Part of me even looks forward to it. Since I was little, my care team has been an important part of my life. My pediatric CF doctor frequently attended important events, such as my local theater shows. My care team feels like my family sometimes, with how much I see them I guess it makes sense. My relationship with seeing my doctor has changed as I get older, but that level of comfort remains mostly same. I have an immense amount of trust in my care team. I know that they will listen to me and help me when I need it most. I recognize what an incredible privilege this is and I am thankful every day that I get to have this experience.

Even though my care team plays a big role in my comfort within medical settings, there is an inevitable discomfort when it comes to the challenges CF can bring. I hold my breath as I open my most recent test result on MyChart and I feel my heart pound as I read messages from my doctor. No matter how comfortable I feel in a given moment, there is always the uncertainty of what happens next.

Lately, I have been battling a growing list of unusual symptoms. Some of them have been ongoing for almost two years but are now starting to worsen. My labs come back mostly normal, but with a few concerning levels. So my doctor sends me off to get more labs done at a specialized facility. After more labs and more concerning results, there is still not a clear answer as to what is going on. Next up: a CT scan. Only problem? My insurance said absolutely not. After a series of appeals, phone calls, and already spending $75 on the oral contrast… still not a clear yes. So we keep fighting and waiting, what’s new? This is the discomfort within this life. I will be forever grateful for the comfort that my care team can provide throughout it all. They give me jokes, laughter, meaningful discussions, and a listening ear.

Regardless of your feelings about your care team, there must be a source of comfort somewhere. Family, friends, music, doing your nails (that’s been what makes me feel better lately), or your favorite blanket. The only way to survive the uncomfortable situations that seem to love taking over life is by finding those pockets of calm, laughter, and joy. I hope each and every one of you has found something that provides this for you, and if not I encourage you to keep searching. It will find you.