One year later

March 06, 2017

I have distinct memories about my life one year ago.

One year ago in January I was on a train to NYC midweek trying to get into a Fecal Microbiota Transplant (FMT) clinical trial- it turned out to be poorly run and not a good match for my needs, so I didn't participate.

One year ago in February I visited my parents in Florida. On my second day at the beach instead of adopting the "Sanibel Stoop" (seashell collector position) or watching the pairs of dolphins play, I whipped out a printout of the detailed medical option flowchart I had been obsessively working on and asked my parents to help me work through my options. I was sick and feeling desperate.

One year ago in March I was low energy, not sleeping well, stressed at work, and spending my free time cooking SCD-legal meals since that's all my gut could tolerate. Despite being on a rainbow assortment of medications, herbal supplements, and vitamins, I was suffering on a daily basis.

And then, exactly one year ago in early March, despite being totally run down, I became filled with hope. What I had been doing hadn't been working, so we made a new plan. My sister launched an online fundraiser to help me go to Taymount Clinic in England to receive FMT. We raised more than $13,000 in about a week thanks to all of you. I was floored. I don't think I will ever cease to be comforted by the generosity and support I experienced last March. This fundraiser also pushed me to be vulnerable and open up about my severe long-term and daily struggles with Ulcerative Colitis to a much broader circle of acquaintances and colleagues.

... fast forward to one year later ...

My plan from a year ago had always been 1) Try FMT 2) Have surgery, if needed. As it turned out, step 2 was needed, so here I am. Here we are.

If you've been following my blog you know that even 2 months post-surgery, this is not easy. I have unpredictable pouch leaks. I have stinging skin around the stoma site. I have days when I just want to "be normal."

HOWEVER, unlike one year ago, I am energetic, I sleep 8 hours a night, I have super low stress levels (!!!), I cook with enjoyment and buy packaged goods to help make meals easier (ie: I buy yogurt instead of making it), I am not taking any medication, and I'm not having bowel pain/urgency!

Since I'm not working right now, some people have asked me what I do with my time. Short answer: not much. When I lived in New York and friends would visit, we would go see the sights, trekking all day uptown and downtown, finally crashing on the train ride home to Brooklyn. At my apartment, they'd shake their heads and rub their aching feet saying they could never live in New York, asking me how I did it. I would laugh and tell them that my normal weekends without visitors did not involve schlepping all over the city. Maybe I'd do one or two special things, but mostly I did laundry or went food shopping or realized it was 2pm and what had I been doing all day, like everyone else.

All this is to say, I currently live like a local, not a tourist. I do laundry. I go food shopping. I go on long walks. I do yoga. I putz around the house. I go to doctor's appointments. I see friends and family. I read. I watch Netflix. I call my senators. I take naps. Sometimes I change out of my yoga pants and try to do something "ambitious" (a movie, a museum, a restaurant). Sometimes it's a success and sometimes it involves poo leaking all over my jeans: another reminder that it's ok to stay close to home and this is medical leave, not vacation.

As I think back to one year ago in March, so much has changed, but there are still some things that remain the same. Last year I was filled with hope from having a plan of action and people I love supporting my choices. Today I feel the same way.