24 hours with: The cystic fibrosis advocate
Like many other young professionals, Katharine Scrivener wakes up at about 6 a.m., spends her days in meetings and sending emails, and comes home to make dinner, relax with her husband and work on freelance projects. Unlike most other young professionals, however, Scrivener bookends her mornings and evenings with extensive medication treatments.
- My day starts at 6 a.m., and while I’m not a morning person, I’ve grown to love the quiet that comes before the rest of the world is awake.
- Round one of my treatments. Pictured here are my nebulizer cups, the sterilizer I use to clean them, and the four meds I take each morning.
- More medical paraphernalia! Part of my daily regimen is to do some sort of airway clearance to help clear out some of the mucus. I use a machine called a Vest twice a day.
- Since my meds keep me seated, I often work on a freelance article or get a jumpstart on some work.
- Once that’s all over — it takes about an hour — it’s time to get ready for the day. And thus a bathroom mirror selfie.
- Now for what to wear. Is it fall yet? I’m ready for sweaters and cool weather.
- If the bed is made, the day is already a success. (Although bed making credit goes to my husband.)
- Breakfast of champions: Peanut Butter Puffins and milk. People with CF have to make sure they get enough calories because our bodies work so hard just to breathe.
- We moved to our neighborhood three years ago and fell in love with the tree-lined streets.
- I’m not fully awake until I’ve had coffee, and Koba Cafe is my favorite spot to get it. Adam, the owner, and the rest of the staff are incredibly nice — and make some darn good coffee.
- Almond milk latte, please!
- Since I do communications for the alumni office, I work in the actual alumni house on the edge of campus.
- I work in what we assume is the master bedroom, complete with a mirrored closet and a full bathroom. Not your normal office setup!
- Time to check my email! Only one meeting on today’s agenda.
- One of my meds has to be taken with a fatty snack at 10 a.m. and 10 p.m. every day. Today’s snack choice was some yogurt.
- Off to my meeting! Walking to campus from the alumni house takes about 10 minutes — which on a beautiful day like today is a nice little break.
- I have to include our mascot, True Grit, a Chesapeake Bay retriever.
- With UMBC’s 50th anniversary next September, we’re in the thick of planning and excited to get the community involved.
- My favorite part of campus, thanks to the canopy of trees (and the Chick Fil A nearby…)
- Go Retrievers!
- Today’s lunch is from a local sandwich shop. But I have to say that my favorite lunches are when my husband makes me a sandwich. Food made by someone else has a way of always tasting better.
- During my lunch break I take some time to work on my schedule, including when I’ll do my meds and any blog posts that need to go up. About five years ago I started writing about what it’s like to live with cystic fibrosis and it’s become a wonderful outlet for me, and a way to connect with others in the CF community.
- Heading home and … traffic.
- Home sweet home! But just for a minute before I head out to meet some people with the CF Foundation for dinner.
- The Four Seasons Lobby is always stunning and coming here is a nice treat.
- Wit & Wisdom is a must eat, and one of my favorite places to grab a drink and a bite. The side of corn was delicious, as was the chocolate souffle we ate too fast to get a picture.
- The outside patio has one of the best views of the water.
- Home again! And time for round two of my treatments, which can take another hour to an hour and a half.
- Tonight I watched a bit of the O’s game with my husband, followed by one of my favorite shows (I’m currently bingeing on season 3 of Orphan Black).
- Hypertonic saline is one of the nebulizer medications I take that helps to get some of the gunk out of my lungs.
- It’s 10 p.m. which means it’s time for my second snack and pill for the day.
- Tea before bed — especially with some honey — helps soothe my throat, which can get a little sore from coughing all day (or during my meds).
- I try to do some reading before it’s lights out for the night, but most of the time I only get a few pages in before falling asleep.
- Three friends from college — all named Kath(arine)(erine)(ryn) — started an online book club of sorts where we read the same book and write reviews. September’s pick is “Their Eyes Were Watching God” by Zora Neale Hurston.
- I love books and buy them faster than I can read them, so there’s always a “to be read” stack on my nightstand.
“It’s largely very invisible,” Scrivener said of cystic fibrosis, the disease with which she was diagnosed at age 16. The 30-year-old, who lives in Riverside, became an advocate “to put a face on it — to let people know what it does and what it’s like to live with it.”
The Maryland CF Foundation, for which Scrivener serves as a spokeswoman and board member, defines cystic fibrosis as “a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.” About 30,000 people in the U.S. live with CF, and Scrivener said much of the disease’s invisibility can be attributed to the fact that many people with CF, like her, look healthy.
In addition to her work for the Maryland CF Foundation, Scrivener puts a face on CF with her blog, From A to Pink. A communications coordinator in the University of Maryland, Baltimore County’s alumni office, Scrivener blogs and takes on freelance projects in her free time (she and her husband also like to walk along the water, grab a bite at Bagby Pizza Co. and see movies at Landmark).
Although she is vocal about the disease now, Scrivener was not always so open about living with CF. It took her a year of blogging about her life — leaving out a big part of it — before revealing her diagnosis online.
“I kind of had this unveiling of, ‘Here’s what my life is really like,’ and the response was just phenomenal,” she said. “It has largely become me talking about what it’s like living with this disease.”
Sixteen is late to be diagnosed with CF, Scrivener said, and it took her about eight years to come to terms with it. Writing and advocacy, however, gave Scrivener a voice.
“You would be surprised where support comes from, and I think that if you’re open and honest and make yourself vulnerable, the response to that can be really overwhelming in a great way,” she said. “You never really know who is willing to help.”
24 hours with is a series highlighting a day in the lives of Baltimore’s creatives and characters, from their perspective. Explore 24 hours with a professional drifter, a National Aquarium employee and the man who rarely wears pants.
If you would like to suggest someone to be featured, please email community coordinator Quinn Kelley at qkelley[at]baltsun[dot]com.