Monday, February 7, 2011

After The Storm, Here I Am

As many of my recent posts reflect, I've been thinking back on the past year quite often. The word that most often comes to mind is chaotic.

cha-ot-ic (adj.)

1: lacking a visible order or organization [syn: helter-skelter]
2: completely unordered and unpredictable and confusing [syn: disorderly]

It felt like medical pinball last year...the ups, the downs, the never knowing when pain would hit, the inability to plan ahead. For the first time, I was completely at the mercy of my disease and entirely dependent on other people. I couldn't be too far from the hospital and on some mornings I'd wake unable to lift myself out of bed. I was scared, desperate, and losing hope - the same hope that had kept my head above water all these years.

Life is so much better these days. I still have pain, but it's nowhere near the same intensity. I'm able to do much more and, as I sit in classes or enjoy time with friends, I'm able to be truly present. Today I sit here with my pain as an after-thought...healthier, happier, and cautiously optimistic about the year ahead. Today I'm preparing to get my sixth IV dose of  Orencia. It honestly seems like yesterday that I was skeptically sitting down to my first infusion with a swollen and sad amazing mom by my side. Although tomorrow might prove me wrong,  I do know that today I'm okay. I'm able to participate in my relationships the way I want to and, once again, I'm able to consider my future again. I'm not living pain pill to pain pill, nor am I having to plan everything around my lack of energy. I'm really living and happy to be doing it.

RA guy - a favorite blogger of mine - recently wrote a post entitled Emerging From My Worst Flare Yet. He always seems to have the right words. After going through a long and debilitating period, he discusses the strangeness that can accompany post-flare life. It can often feel as if the world has somehow grown without you. With so many choices, possibilities, and decisions to make - all things that weren't available during a time of profound sickness - it can also feel overwhelming. I feel blessed to be overwhelmed by my choices: places to visit, people to see, and plans to keep. My world feels bigger and my future feels brighter.

With my 25th birthday approaching this week, I'm taking my friend Jodi's advice and compiling my first "annual bucket list" - a list of 25 things to do before I turn 26. I'll make the most of this year, whether my body cooperates or not. In fact, 2011 already feels like a turning point. I'll soak up experiences and make memories whenever and wherever I can. I feel like the luckiest girl to love the people I love and for the knowledge that they will be there, even if things get bad again. Finally, I'm pursuing a career that will bring profound purpose to my life; a career that will make sense of this suffering

...and there's nothing chaotic about that.



  1. You are by far one of the bravest people I have been fortunate enough to know. Love you, lady.

  2. Wow Kayla, you have no idea what that means to me. I hope you know that you dealt with your heart problems like a true warrior as well <3

  3. oh, maya, i am SO glad that you are feeling better. and i am very much looking forward to an early birthday celebration tomorrow!! xo