On my way home from Nashville I still felt a little defeated about the ostomy. A quick (but actually rather long) stop at a gas station proved why having that purse with ostomy supplies was 100% necessary as my sister and I changed my appliance in a bathroom stall (all while muttering “wtf has my life come to?”) Due to high humidity and an excessive amount of sweat, the Eakin rings were warped and the appliance was having a hard time adhering to my skin. But that’s besides the point…
” I don’t know how you deal with this.”
“I complain so much and this is what you’re dealing with.”
“You’re so strong.”
“I can’t imagine going through what you have.”
These are some of the all the very kind words I hear from friends, family members, nurses or strangers. And although they are nice to hear and I am forever appreciative, I must stop them and remind them that we are all human, and we all have our own shit to deal with.
I quickly learned the importance of a good support system. At first I really struggled with the idea of inconveniencing others. I know that at a staff meeting my boss doesn’t mind ordering me a different meal because I can’t eat pizza. But I minded asking. My best friend understands when I say I can’t go to the Junos with her. But I cringed at the thought of breaking the news. My Dad enjoys watching the basketball game on a tiny old TV in the hospital because he’s with me. But I know a big screen and recliner are nicer. And my mom is okay when I charge the hospital Wi-Fi to her visa… Well I was actually okay with that too. But one of the biggest things I learned was to give people more credit. This is what they are here for. If your friends and family cant bring you bags of 2-ply toilet paper then who else can? I don’t know if there is any other disease that is more vulnerable than Crohn’s or Colitis but when your support system says they don’t mind helping you in some way, believe them. Be selfish.