Post #68: I am not FB friends with my AAC

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 



You went out for "thirsty Thursday" with your friends?! You have opinions about the election?? GET IN MY PANTS NOW.



Today's prompt: Should people post about their (or loved ones) health on Facebook? Why/why not?

 

Oh, Facebook. Home of sunny vacation pictures, carefully staged food photo ops, and babies of varying degrees of cuteness.

 

I was a latecomer to the FB game; I joined after the initial frenzy, and as a result I have a reasonable number of "friends" (i.e. not over 500). I can't imagine broadcasting news of my AAC to even that pared down list, let alone a collection of hundreds of virtual strangers. I'm not going to judge people who do post about their IBD, but I am not comfortable talking about mine on FB. I don't even "like" Crohn's organizations or blogs. I don't want people to know that way.

 

Here's the deal: FB is mostly about three things. First, it's where you go to show how awesome your life is. People post engagement pictures, wedding pictures, new baby pictures.....FB has replaced old timey life cycle announcements in newspapers (unless you are super fancy/loaded, in which case you will always have the New York Times wedding section). In my baby book, my mom cut out my birth announcement from the local paper; that was how her friends knew I had been born. Today, she would post a picture of me in my little hospital blanket and baby hat on facebook minutes after I was expelled from her womb.

 

Second, Facebook is also the home of the "humble brag." I was reading an article in a lady magazine when I first encountered this term, and it's so freaking applicable. A few examples:

 

1.) My back is so sore! Loading those pallets of diphtheria vaccines for Doctors without Borders can sure tire a girl out!

 

2.) Marathon training is hard, but I'm doing it for cancer research! It's a good thing my new boyfriend Steve, the doctor, is there to help bandage my wounds and rub my bloody feet. Thanks honey!

 

3.) Wow, my new job is hard. I don't have time for a social life, but I guess traveling the world for the Gates Foundation and ensuring that all of the earth's children have access to clean drinking water is worth missing a few happy hours.

 

People have become MASTERS of the humble brag on FB; it's natural to want to share the details of your fabulous life/job/relationship, but you don't want to be an asshat about it. What you realllllly want, of course, is validation about your (awesome!) life experience in the form of a virtual thumbs up.

 

Finally, FB is the place to demonstrate your highly attuned social consciousness or offer biting tidbits of social commentary. It's the new place to show off your smarts. This became glaringly apparent during the elections, when suddenly every single FB friend turned into Thomas Friedman, offering solutions to fix the economy and bon mots about the quirks of the American electoral process.

 

So. If FB is about sharing awesomeness or humble-bragging or proving that you read stuff, how exactly does Crohn's fit into that mix? Here are things you will never see me post on Facebook:

• Going in for my colonoscopy-who spent 18 of the last 24 hours having explosive diarrhea? THIS GIRL!
• Just got back my weekly blood work-I am the inflammation queen! #blooddrawallstar
• At least all of this medication related hair loss is making my hair easier to style! (SMILEY FACE)
• Had to cancel lunch plans -sticking with toast and Gatorade today! Whooooooo!
• 3 doctor's appointments in one week? How did I get so lucky? AWESOME SAUCE!

 

Ok, I don't really talk like that, but you get the point. These are not momentous life events that I want to share-these are frustrating, everyday occurrences that don't merit posting on the FB wall of awesomeness. Unless my AAC wins a Nobel Prize while vacationing in Tahiti with Colon Firth (ha!), you're not going to hear about it.

 

When I first got diagnosed, I briefly toyed with the idea of making some grand announcement on FB, because I knew my friends and "friends" would offer kind and supportive words, but ultimately I decided that this was one thing I was going to keep private. I choose to do my over sharing on an anonymous blog. A few friends know about it; if they want to know how my AAC is faring, they can come here. If not, they can read my status updates about the election. It's their choice, and that's important.

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.

Post #14: Colon Firth

Someone nicknamed their AAC "Colon Firth." I am ridiculously jealous that I didn't think of this first.

I was just re-reading my post from yesterday, and......sorry, got distracted for a moment by the dreaminess that is COLON/COLIN FIRTH. gah.

Anyhoo, I was thinking about it, and I realized one of the things that sucks about waiting: the utter passivity of sitting around, or putting plans on hold, while you wait for someone (the doctors!) or something (my AAC!) to make important decisions about your life. This passivity sucks for several reasons, which I shall now list:

1.) I try not to be passive. It makes me feel like I don't have options/a voice.
2.) There is no endpoint for all of this waiting. There is not a clear timeline for action of any kind.
3.) Eventually, being passive about this makes me more passive about other things in my life.
4.) Human beings are adaptable, and this passivity feels normal. I'm in kind of a holding pattern here, and I've become used to it. I don't think I'm as concerned or angry or aware of things as I should be.

I just got my work schedule for the fall, and while it sounds manageable in my head I'm completely freaked out about making a commitment of any kind because I just don't know what my situation will be like in three or four months. I don't know if I'll be able to teach morning classes. I'm scared of getting sick there, of getting overwhelmed, of causing or having to work through a flare.

During the whole diagnosis process earlier this year, as my symptoms were getting worse, I basically held my work life together with Luna bars, lemonade Gatorade, and denial. I was slogging through three hour classes where I often felt dizzy or sick. I didn't have the energy to deal with my students. I couldn't remember details, and my mind didn't feel sharp. Eventually, after many sick days, I was at work and almost passed out in a computer lab. That weekend, after a visit to urgent care and three liters of fluid, I still felt sick, and I knew it was time to take a leave of absence. Everything just caught up with me at once. It was a crappy decision to make, but I had to do it. I don't want to put myself in the same situation again, even though I have more information now and some new medicines to throw at my AAC if things get out of control.

But what I'm realizing is that I am going to have to be the one to make decisions about what happens next, and I feel like I'm throwing darts at a dartboard. I don't have a crystal ball up my ass that can tell me what comes next. Which would be awesome.

In other news, even before I got my schedule, I was apparently more stressed out than I thought. My stress level has a direct correlation to the thinness of my brows, and last night I plucked those mothers into a fine, fine line. It's not a cute look. With my glasses, I think I look owlishly surprised all the time. I am calling a moratorium on plucking for a good two weeks, b/c at this point I may as well just shave them off and draw two wonky lines that aren't level BECAUSE THAT IS WHAT IT KIND OF LOOKS LIKE ANYWAY. The right eyebrow is higher....it's a thing. Luckily, there is a Clinique bonus going on, and besides being a bonus whore I now have a sudden need for emergency eyebrow resuscitation products. Silver lining!