What Kind of Rose Blooms in October?

Today I had the amazing opportunity to meet and have lunch with author Wade Rouse (At Least in the City Someone Would Hear Me Scream, 2009) and his partner Gary. Working at a bookstore does have it perks to be sure!

Having lunch with these two hilarious men was an experience in its own, but what it has to do with colitis and gluten intolerance is that Wade and Gary have a close friend with colitis and a relative with Celiac disease. Once again proving my point that everyone knows someone with IBD and now I'll add Celiac and/or gluten intolerance.

Gary made the point that their female friend with colitis would go out to dinner with them, eat something obviously G.I. destructive, and then be horribly sick.

I've never met this woman, I don't even know her name, but I get her already. I know exactly why she did it. The desire to be normal and healthy is so strong that you can't help but time and time again do irrational things in order to maintain a pretense of health. The worst thing is that afterwards I'd always blame my sickness on something else e.g. food poisoning, over eating, fine ground razor blades mixed in the spice, you name it I've blamed it.

The crazy part about colitis is that I'm not an unusual case. At the time I was being treated by my Marquette gastrointerologist (2001-2003) I was the fourth case of colitis that he'd treated that had all followed the same pattern.

Four young woman ages 20-21. All with a severe colstridum difficili infections that within one year developed into chronic ulcerative colitis. Three of the four cases of chronic ulcerative colitis were unable to be controlled with medication and resulted in total colonectomy. Two of the three colonectomy patients had a colonectomy within two years of contracting the initial colstridum difficili infection. The remaining colonectomy patient (me) was able to hold onto her colon for three years. One of the four of us was able to gain control of her colitis with medication.

I never knew any of the other patients my gastrointerologist treated. But when I was first diagnosis I desperately wanted to meet them. I wanted to touch them, see that they were normal. I needed to know that I would be okay. I did briefly go searching for others, but all I found was a support group full of 40 year old + patients, mostly men. I didn't even attend the meeting and instead pretended I was lost.

During this time I did have one close friend with colitis- B.J. He'd been diagnosis with UC when he was 15 and had his colonectomy at 17. From the first day of my diagnosis he told me to get it taken out, so I could move on with my life. As I grew more sick I stopped talking to him, I didn't want his advise to be true. And he was a guy, he didn't understand me when I was healthy, how could he understand me when sick?

Now nine years later I want to connect with other women IBD patients. I want to touch them and laugh about bathroom habits that only a female IBD person gets. I'm not Joan of Arc and I don't want to be an Army of One. But I don't want to be part of a group of woman who lament their loss either.

I want laughter and joy.

And beauty.

And hope and healing.

And support for a cure. Lots of support for a cure.

Because now I'm going to have a child. I need to know that other woman have gone before me and it's all going to be okay.

Stallside Manner

I figured taking pictures in a public restroom ran a high risk of me being arrested, so today's photo is a random shot I took at the Wheatland Music Festival.

I have to admit there is a part of me, and I'm not sure how big that part is, that desperately wants to flush every single toilet in a public restroom, when someone is in a stall next to me on their cell phone.

Seriously.

The first time I heard a Stall Talker was at Meijer. And in that particular case I have to admit the phone call sounded really important-- the Stall Talker needed to pick up more ice cream. As a frequent user of public restrooms I'm overheard various conversations ranging from critical importance, e.g. we need more toilet paper at home, to the completely inappropriate, e.g. I think my husband is cheating on me. Come on people-- it's called text messaging for a reason-- it's silent.

My experience with yesterday's Stall Talker has by far been the most informative conversation I've ever eavesdropped on. Apparently, there is a medical terminology instructor at Baker College that is heinous! She makes you actually know how to spell words-- correctly! Big words. Words like radiculopathy, pregnancy and enema! How horrible. Seriously, I'm glad that I'm not studying to be a nurse, and neither will the Stall Talker after this class.


I don't really feel bad for her though. Call me crazy, but I think nurses should be able to spell words like anemia and enema. Having had and experience each word, I can tell you having those words inverted on your medical chart would be... inconvenient.

Before Any Long Journey, Always Use the Bathroom First

Week 15, Day 5

So it's pretty obvious that I haven't been blogging for the last month or two. Part of it is because my life has taken a bit of a turn, but the other, bigger part is I've had no idea what to write about.

Seriously, who wants to ready about another pregnant woman's journey to birth? Only grandmothers-to-be and some close friends who feel guilty or are pregnant themselves. Truth be told my experience is not really all that unique or interesting. Exciting, yes! Interesting, not so much.

Even more uninteresting, my first trimester has been relatively easy. Yes, I was tired and slept 10 hours a day, but who wants to read about me sleeping? Other than a few bouts of nausea I didn't have any morning sickness. In fact, the opposite happened for me-- I didn't want to eat or drink anything. That feeling did get me into trouble around Labor Day and I had to have a couple of bags of IV fluids pumped into me. But after that I've been fine.

It's still too early to tell if Amberic is going to be a little Ambrose or Ericka. I'm not showing, but my butt and boobs are getting huge along with my waist, but everything else is shrinking. The biggest decision we've made is not to repaint my former office, which is going to be Amberic's room. Right now it is a dark Merlot red. Amberic won't be able to see color, much less have an opinion about it for several months, so why waste the money changing something we already like? I'd rather save the money and time for when Amberic can say, "Mom, I hate my room. Can we paint it pastel green with a Noah's Ark theme?"

In fact, the most interesting part of my pregnancy is that for the first time in over 9 years I spend more time in the ladies room peeing than pooing.

So I'm going to be honest here. After the initial thrill of finding out your pregnant, and with the exception of some milestone events like hearing the heartbeat, pregnancy is turning out to be a very long, long waiting game.