It’s 12:25, Thursday morning. My last post was sometime before Thanksgiving. And now I write from the late night/early morning hours. Not because of inspiration or because I have something profound to say. No, I am in just too much pain to go to sleep and, well, I missed you all. Why have I been so silent? Simple. I’ve been ill. Sure you see me around sporadically with my tweets and instagram posts. But if I poured out on this blog what was going through my head at that time (which is what you get from me when you read The Chronicles), it may not have been so uplifting. My “cure”, the J-Pouch has been resisting my need for it to be healthy and well.
I spent most of my Thanksgiving forcing myself to eat so that I wouldn’t alarm my mother or son. And the weeks between Thanksgiving & Christmas I spent most of those nights in tears from the pain of pouchitis, uveitis, joint pain, nausea, scalp pain and dry skin. I missed my nephews birthday party Christmas day because I used every ounce of energy I had to make the annual Christmas Day gumbo for the family…because Jax wanted to make it this year. I have felt completely defeated by my disease and quite frankly, I didn’t want to admit it. I was also sick of hearing able bodied, well people tell me how to manage around my pain and infections. How certain things “only take 5 minutes” or how they “never see you do anything to help out”. If people only understood what it takes for me to stand up to get my son’s breakfast sometimes. Or dropping cups of coffee simply because my fingers stopped bending for a second. Or my favorite, intending on running into the bathroom to pee and then not being able to leave for 5 minutes and having someone make fun of you with, “I thought you only had to pee!”.
Yea, it’s been a bad couple of months. Now I sit up in pain with a sick Hippo who only wants to cuddle and I’m afraid of catching something before my next infusion treatment. I could start off with New Year resolutions for the blog and everything, but the fact of the matter is, life is constantly changing in my world, led by a child and two autoimmune diseases. Instead I’m gonna say this, thank you for continuing to tune during this break in our broadcasting. Radio Silence has been revoked. Stay tuned more tales of my Hippo and my fake colon.