When you live with chronic illness, you have an extra set of unknowns in your life. You can’t reasonably guess how you’ll feel. You don’t know what symptoms will pop up. You never know when a crazy new symptom is going to make its way into your life. At that point, you have to decide if it’s anything significant and 99% of the time, I’ve found that it usually isn’t.
One thing in particular bugs me though. It’s funny how the success of a ketamine infusion and good epidural catheter placement will dictate how my life plays out. That’s a tough pill to swallow. Sometimes the epidural catheter placement isn’t solid and I don’t get a good block. Therefore, I am ultimately left with higher levels of pain. These infusions dictate whether I’m bed bound or doing typical teenage things. At 18 years old, this shouldn’t have to be a concern. I should be able to go to school, hang out with friends, ski, do Taekwondo, and all of the other outdoorsy things I love to do. I spent my 11th, 13th, 16th, and 18th Birthdays at Children’s Hospital getting treatments or going to appointments. For my 18th birthday, my doctor gave to me 29 trigger point injections in my back and neck. No one deserves a life of uncertainty and no one deserves a life full of chronic pain and illness. Until everyone is freed of hospital bracelets, we must continue to fight like a champion!