Fair/Beginning of Invisible Illness Week

Yesterday was a big day! Doug and Jacob and I went to the Allegan County Fair. Doug’s work has a picnic at the fair every year. Last year Jacob was still a bit too small for rides, etc. He was still in the stroller most of the time, and not terribly interested in much.

Oh, what a year can do.

The child is fearless. He went on the HUGE Ferris wheel with Doug. He was WAY more excited than Doug was, for sure. He kept saying, “I want to go on the Ferris wheel!” the second we told him we were going to the fair. So they did, and he loved it.

He also rode all the little kiddy rides, much to my germophobic chagrin. I went through a LOT of wipes! I really can’t think about how many disgusting things could be one those rides, or my child would never leave the house without his protective bubble. Doug and Jacob went in the spinning apple thing, and there was another little kid in there that wanted to spin. Shocker of all shockers, he actually ASKED Doug if it was okay to spin with Jacob in there. (Kudos to those parents, wherever they are!) So they went really slow, and my son is like "faster, faster!!" Anyway, he had a WONDERFUL time. Doug, on the other hand, was a bit sweaty and more than a bit green when he got done. : )

Today kicks off the beginning of Invisible Illness Awareness Week. Yesterday at the fair, I wasn’t sure if I wanted my illness to be more invisible than it was at the time…. I mean, I always have the trach, so mine is more visible than some, but most people just assume that I had throat cancer (at the ripe old age of 29 when I first got the trach??), and that I’m fine now, because I look okay. I don’t go out in public when I’m doing really bad unless I go to the hospital or doctor or something. So when I"m out, my hair is done, my make up is one, etc.

Yesterday, however, at the fair, I was walking with a cane. I’ve been having hip pain, as most of you know. I have to call later this morning about an MRI. They are still looking at avascular necrosis. No fun. So I have a cane, a trach, I’m limping, and it was horrible. I almost think I’d rather have people make assumptions. I was very self-conscious, which I suppose is my own issue. And even though in the shade it was fine, in the sun (where we were most of the time) it was HOT. I got in the car and just bawled. Then I got home and bawled some more.

It’s SO frustrating dealing with a chronic illness on days like that. I just want to be normal and walk around with my husband and child and ENJOY a day at the fair. I guess part of me was just feeling sorry for myself because I was hot and tired, and it’s easier to fall prey to the “if only’s.”

And I have to admit, I’m freaked out about this avascular necrosis (AVN). I mean, I know I can’t change anything by worrying, and I’m MUCH better than I used to be, but I just do NOT want to deal with this. Enough already.