Back in 2013, just before I was diagnosed with Rheumatoid Arthritis, I had decided (with absolutely no medical know-how and with the help of webMD) that I had lupus. We joked that, sans a real diagnosis, I had proto-lupus.
Now it's 2016 and I've decided I've got proto-Crohns disease. I've got severe abdominal pain, nausea, vomiting. No other troubles, just that. No diarrhea, no bacteria, no appendicitis, no cancer, no ulcers upper or lower, no internal bleeding. It seems to respond to stress, which indicates it could be autoimmune. In my flailing around to find what the heck this could be, I think Crohn's seems most likely. (Meanwhile my doctor is working on an actual diagnosis. It's just a matter of time and tests, tests, tests.)
This pain absolutely makes me non-functional. It's pretty ridiculous. Chances are when you see me I'll be doubled over. Do me a favor and tease me about being an old crone, or whatever; make me smile. I'm sick of misery. I'll probably make some bad jokes that you'll laugh awkwardly at, or better yet, tease me for making terrible jokes. It's all good. Let's just at least try to be bright about this misery. That's my goal; fight misery with bright-ery.
Speaking of brightery. As I lay clutching my heating pad and writhing in pain the other day, my littlest, who is now four years old, came up to me and said, "You don't look good."
"You look pretty good, though. What's your secret?"
He ran off.
He came back with a stick of gum.
Without a word, he handed it to me.
"So this is your secret, huh?" I asked. He pressed the gum into my hands.
I tucked it under my pillow to save for later.
He came back later that afternoon to check on me. He looked somber when he saw I was still in bad shape.
"Where's your gum?" he asked me. We checked under my pillow; it wasn't there.
He ran off and came back with a new stick of gum, and told me firmly to take it, and stayed to watch to make sure I did so.
*-*-*
I spoke with my seven-year-old not long ago about this pain, and my frustration that the doctors had not found what was wrong with me yet.
My son got a little excited. "Maybe it's a brand new disease," he said, "and you get to name it!"
We had a merry time thinking of good new disease names. Crushing Moon Breaker was my favorite. The second-best one was Poopypants Pain Disease. Sounds better than proto-Crohns!
*-*-*
The community around my son's school is pretty tight. I just adore it. The other day a mom sent home a beautiful hand made magnet with a tiny little acorn baby inside it. The detail is breathtaking and it warms my heart to see it. I treasure it. Thank you Andrea!
Many people have offered to drive for us or take us dinner. I can't tell you how supported I feel. It's good not to be alone in the world.
