I had not seen this sad little chart before this morning.
I was searching for a photo, minus the classic ulcerated & inflamed intestinal mucosa shots, that would help to illustrate my 0500 today.
Crohn’s disease is insidious by nature. This I know intellectually, academically, historically. And yet, time after time, this disease brings me to my knees, and I am brought back to this bewildered, painful space:
Really? Really? I repeatedly ask myself, my body. Then I move to: “Oh, holy hell! What did I do? What did I eat?!” My mind frantically searches through every morsel of food, every sip of fluid from the previous days… what did I do? I’m a nurse; I, like anyone else, desire a solution. A fix, preferably a quick one. I just started reaccumulating my sick and vacation hours at work, for pity’s sake!
But I know, in my heart, in my educated nurse brain, that I did not “do” anything. This is not a punishment for my snarky nature, this just IS.
Yesterday was my Wednesday off. I woke with some ankylosing spondylitis symptoms that I’ve been struggling with: hip pain that can make it difficult for me to walk. But I’ve been able to manage that with stretching and tylenol. Not an enjoyable addition to my crappy body’s needs, but manageable.
So this morning, I rise at 05-something in the wee hours. I head to the kitchen to start some eggs boiling, and notice that I have some painful indigestion. Notice that my skinny belly is hard and distended, swollen so high that it’s pushing up into my ribcage. I shrug, I think, huh… that’s odd. But my goal is to get food packed and get a shower, catch the 0615 bus to OHSU.
I head into the bathroom… and within moments the storm unleashes.
In the end, some of the exploding insides have made their way to the outside, and I’m lying on the bathmat, sweating with a fever. I have now 7 of the 9 symptoms listed on the sad little toilet-man chart above.
No work for Nurse Apple today.
Well, the work of tending to the insidious lurking beast that resides somewhere between my mouth and my large intestine.
My little inner growling demon. Is it a he? A she? Or is it simply the armies of inflammatory cytokines? In cancer, in autoimmune diseases, we always used to say “Blame it on the Cytokines.”
Either way, just like blame and grudge holding in larger life, it doesn’t help with my disease(s).
Today I will sleep, I will drink fennel tea. I will let my husband dote on me. I will try, as I tell my cancer patients, “try to be gentle on yourself today.”