Post #54: In good company

Dear diary, today I pooped and ate some pumpkin bread and pooped and felt sick and took a nap and pooped again.
xoxo, AAC

Lately I've been keeping a "symptom diary" again, which makes me feel like an experiment in progress, which I guess I kind of am at this point. There's no accounting of my day-it's strictly a record of symptoms and side effects. This is not a food journal, or a feelings journal-it's a color coded data set. I can scroll through it and notice trends without reading the details. I realized after this latest round of doctor's visits that I needed concrete proof about the goings-on of my AAC so I could answer the myriad questions I am asked with specificity. When you have an, um, active bowel such as mine, the details tend to blur together. Now, however, I can tell you EXACTLY what went on in my colon on, say, September 19th in the afternoon. I was feeling fatigued and bloated, btw.
 
Having the raw data is depressing, but it answers a lot of lingering questions. Yes, I am still having side effects and symptoms. Yes, the nausea from the meds is better.....but No, these current medications aren't really controlling my Crohn's. Yes, I still spend a significant portion of my day feeling sick, tired, and uncomfortable.
 
You can't explain away or minimize your symptoms when you have so carefully and faithfully recorded them each day. They exist, despite any fancy metal acrobatics meant to obscure their existence or deny their impact. Maybe this data is what I need to move along to the next step. I don't always believe my doctors, but I can believe this. It's what happened to me, according to me. Incontrovertible proof.
 
I do have a tendency to minimize things, or deny how much of an effect they are having on my life, and I'll say or think just about anything to avoid making scary or difficult medical decisions, but then-I look at the "diary." I think that's the wrong word, for something so clinical-Bridget Jones keeps a diary. There is no Colin Firth up in this mother (bastards). This is more like covert colon surveillance. Whatever you call it, I can see how little energy I have, and how much time I spend in the bathroom or feeling nauseous or having cramps, and it's something I can't argue with.
 
When the doctor asks me questions, I think I'm answering honestly, but then I go back and take a look at the log (there we go) and realize I'm under reporting my symptoms.  
 
The waiting has been wearing on me lately. I'm waiting for next steps, for side effects to decrease, to taper medication, to take blood tests, for The Talk to come on (there's not a lot going on in AAC land, ok?!). I'm waiting until the last minute to take my meds. I'm waiting to eat in case I have to go somewhere/do something. I'm waiting to take a nap until I have to, because I'm just really tired.
 
Do you know what makes this so much more bearable? Surrogate grandparents leaving sunflowers in a watering can in front of my garage, because they know how much I love them. My neighbor insisting on walking with me a few times a week because it will make me feel better, with the promise that "we can make fun of other people's yards." Friends who call to check on me and drive me to do fun things and let me play with their dogs. Family members who let me break down a little, and still love me the next day.
 
While I wait, I am constantly humbled by these gestures. My diary/log/journal/data set may be bleak, but at least I have some good company during the down times.