how are you?

I’m fine.

As I lay in bed yesterday having my monthly pity party, I realized that I am definitely not fine. I’m so tired (prolly because I’m chronically ill). I’m in so much pain (prolly because my gallbladder and liver are fucked). I feel so guilty (prolly because I have a healthy 10 year old daughter and an even healthier 30 year old husband and I have no energy to be good wife/ mommy).

I have many health issues, this is no surprise. I have a permanent ileostomy (google it- it’s pretty fantastic). I have been recently diagnosed with Triple A Syndrome (it’s even more fantastic than the ileostomy). All of my issues first presented as problems with swallowing food- it would get stuck, hurt, and I would have to make myself throw up to relieve the unpleasantness of the whole situation. So, for the past 3 years, every 6 months or so, I go in for a routine esophageal dilation. After I have the procedure done I can swallow my meds, my food, hell, even a whole rotisserie chicken. Unfortunately last year my normal GI doc left UT Southwestern and I am currently stuck with some asshole who doesn’t believe that the dilations are helping and refuses to do anymore. His suggestion: liquid diet. I’M 32 YEARS OLD. I have liquefy everything I eat? Seriously? This is so not ok.

The other “issue” I am having right now is my stoma. It’s long. Like, flaccid penis long.

Remember this guy? This is my stoma.

Unfortunately my stoma is working. Mechanically speaking, it’s perfect. I may be picky, but

I want it to at least look pretty and be shorter so I don’t have to change my bag ev.ery.day. And we aren’t even to summer- last year we had a record breaking heat way- my bag didn’t stay on 12 hours. It is exhausting.

Am I ok? Nope. But, I hope someday I will be- because I cannot live for 50+ years like this.

“Oh dear.”