What are you grateful for?
I’m thankful for good doctors, medication that works, for my husband Seth and for a loving family who always believed that I could survive and thrive with Crohn’s Disease. I’m thankful to be able to eat and enjoy good food. While my list could go on and on, this Thanksgiving, I’m most thankful for a 12 year-old named Johanna.
At the beginning of the year, one of the dancers in my middle school Israeli dance troupe was having hip problems and couldn’t dance. Her mother informed me that she was being seen at Children’s Hospital and they didn’t know when she would be able to dance again. The dancer insisted that she still come to rehearsal to watch to keep up with the choreography. During one of the dances, I looked over and saw her crying. I went over and gave her a hug. “I just want to dance.” Her words were all too familiar to me. I remembered being in a hospital bed at Children’s Hospital, a 15-year-old feeling absolutely heartbroken after being told I couldn’t dance.
I emailed the mother after rehearsal and shared my story, hoping it would bring some comfort to her daughter. The mother, upon learning that I have Crohn’s Disease, asked if I knew about another dancer who had been recently diagnosed with Crohn’s and was having a tough time. I corresponded with the mother of the dancer and learned Johanna’s story.
Johanna was recently put on the Specific Carbohydrate Diet (SCD). In the world of a teenager, that means no pizza, candy, soda. Can you imagine? Her mother spends countless hours a week making dishes that Johanna can eat. Johanna brings her own food wherever she goes. At parties, she’s the only one eating different food. She dressed up for Halloween and went out with her friends but couldn’t eat any of the candy they collected. We have chatted a lot about how frustrating and socially limiting it is to be on a diet like the SCD. The social aspect is frustrating, but the important thing is that the diet is making her feel good. She is finally pain and symptom free.
I have been talking to Johanna about strategies to deal with the foods she misses. I’m hoping she will collaborate with me on some future blogposts (stay tuned!). Maybe we will even cook together. I want her to know she can survive and thrive with Crohn’s Disease. I’m hoping we can get the entire dance group to raise money and participate in a Take Steps walk in June. Johanna will be our team lead and hero.
Johanna has taught me that no matter how old you are, you have a voice. On November 1st, she started her own blog called 1,2,3, SCD! where she shares updates about life with IBD and her favorite SCD recipes. I asked her what motivated her to start a blog and she said “I thought it would make it easier if I felt like I was talking to someone else. It made me feel like I was helping people. It makes me feel strong.” Strong indeed!
It’s scary to be put on a new diet or medication and not know if it is working. Johanna’s doctor recommended that she stay on the SCD diet for a few months before they check her inflammatory markers. She and her family have been holding their breath hoping that the diet might bring down the inflammation in her body. She recently had the routine blood testing done and the results were incredible. Johanna and her family have a lot to be thankful for. Johanna’s journey with SCD and Crohn’s Disease won’t be easy, but she’s got everything she needs to succeed. I can’t wait to watch her journey unfold. Please join me in following her blog.