Ann Elizabeth Kay Marvin shared her thoughts with us about how she plans to participate in this year’s #duradash. Visit her page to see updates on her progress and give your support!
Ann Elizabeth, 34, has been living with spinal CSF leak for 11 years. Since then she has had three major surgeries and numerous epidural blood and fibrin glue patches. She is currently recovering from her most recent epidural blood patch.
What are you doing for #duradash?
My goal for #duradash is to paint and draw while I lay flat (I had a blood patch done just a few days ago). My activity is very low until I can sit up, but even then I’ll be moving slowly. So right now, I’m dedicating my activity to hydration, my art, seeing friends, meditation, spirituality, and being grateful for every day I’ve been given and for the opportunity to make my pain not be in vain.
What to you want people to know about your experience with spinal CSF leak?
Over the last 11 years with spinal CSF leak, I’ve ended up in the darkest moments of my life, which led me to my faith and 12-step recovery program and sobriety—and which led me, ultimately, to meeting my husband. Today, I’m still trying to treat my spinal CSF leak and now that I have a community and a healthy support program, I’m able to work with my doctors on moderate pain management. Unfortunately, pain is inevitable with a spinal CSF leak, but I want to be happy and help others, and I can’t do that if I’m numbed out. In some ways, my pain is motivating. I wouldn’t be raising money if it weren’t for my pain. And beyond that, a lot of the good things in my life stem from it. I know I’m a deeper, more compassionate person because of my experience with spinal CSF leak.
What research on spinal CSF leak do you hope to see in future?
I want to see treatment options that have higher success rates, and a cure would be ideal. I would like to see research into new treatment options for patients with connective tissue disorders because surgery and patching doesn’t always work for us.