Kerry

“I'm free to move about without help, or me trying to push myself and drag a pole.”

We recently had the opportunity to talk with Kerry. Kerry told us, “Before I was diagnosed, I wasted away from 190 lbs down to 93 lbs. It was terrifying and horribly painful. No one could help me. All the tests were normal. They said my vitamins were normal. I couldn't understand how I could barely eat or keep anything down. Once I finally had a doctor order a gastric emptying study, it showed that I had severely delayed emptying.”

Kerry has Ehlers-Danlos syndrome, a central cord injury that's been progressive. “I’m still an incomplete quadriplegic. I have use of all four limbs but they are all affected. They all work(ish) basically. Somehow that affects even my gut. I have idiopathic gastroparesis. It works when it wants to, so I can eat for comfort and to get some vitamins that I can't get in other ways.”

After this diagnosis, Kerry had a feeding tube placed. They tried bypassing the stomach and discovered the delay went beyond the stomach as well. Feeds were constantly painful and they couldn't be sped up. Kerry wasn't able to maintain the tube or enough nutrients so the switch was made to TPN. “I had loads of infections until IVIG was added to my treatment. I've been infection free and thriving since. TPN has helped me so much, especially combined with IVIG”

Kerry’s attitude towards the medical supplies and illnesses has changed over time. Kerry said, “When I was young, I hated looking hurt. I was accident prone. So I was teased about that. I would sprain my ankle and force myself not to use the boot and walk right off if anyone was looking. That not only physically harmed me but it took a piece of my soul.”

Kerry since, has started to see things in a new light. Kerry likes to personalize medical supplies. “I absolutely love when there's customizable colors because it's less labor for me to 'fix it' myself. So much of my life is medicalized; the stuff we wear and use every day. It's an extension of myself. I absolutely want it to fit in with the rest of the look.” Kerry loves color coordinating, blue FreeArm, blue wheelchair, blue supplies cart… It adds a fun pop of color!

“I would tell myself I love all of me. I would say learn about ableism. Lean into your community. It's okay to let go of friends and family that can't be there for you. There's a whole community waiting for you. Social media can be a friend, but take breaks.”

And any advice for newbie Tubies? “I would like to tell other wheelchair users and Tubies, this life can be so hard, but tools like the FreeArm can really bring so much freedom. I can't get over the difference it's made in my life. I'm free to move about without help, or me trying to push myself and drag a pole.”

Kerry is attached to infusions 18 hours a day, when asked what’s the best part about the FreeArm, Kerry happily said, “It allows me to go everywhere!!

Thank you Kerry for sharing your journey with us. We are so happy that your FreeArm allows you to express your fun style and be on-the-gooooo.

You can follow along with Kerry at Disabled in Massachusetts.