Archive | July, 2011

Something to Prove

29 Jul

“You cook like you have something to prove”

The sous chef and I were having a glass of wine after a busy Friday night in the small boutique restaurant at which I was an intern.

I surveyed myself, standing there at 24, moon-faced, a bandana covering my bald head, hips aching, covered in chocolate and goat cheese. Unlike my fellow externs, I came into school with a bachelor’s, but wasn’t old enough to have a mid-life career change. I held the same full-time development job throughout school and externship, going to work early so that I could both keep my job at the same level and go the 35+ hours a week at culinary school. It was only 16 months, after all. I could do anything for 16 months.

Saying things like, “I can do x for y period of time” is a very bad habit of mine.

People are surprised that I decided to go to cooking school *after* my Crohn’s Diagnosis. It wasn’t the plan, exactly, to go at all. I had always wanted to go, but my mom insisted I get a four year degree out of high school, and I relented. I did, got married, moved, got a real job. I got sick when I was 18, the summer after my freshman year of college, after a bout of particularly brutal mono. If I did the math, I could pinpoint the date of my last day of normal health. The time, even.

I bounced from health center to ER to doctor in college, each one not finding anything (because they didn’t test) and writing me off as an overscheduled basket case that drank too much. I put my foot down, finally, after I graduated, and a doctor found a marker for celiac disease. She discouraged me from seeing a specialist, so it was another year before I learned that the marker can also be positive with Crohn’s Disease, further tests were done, and the rest is history. That was in November, I started school in January, and a biologic shortly after that.

Signing the loan papers and getting my knife kit was an expensive and self-destructive flip-off to my body electric. You’re going to attack me, immune system? Et tu, digestive system? FINE. I’m doing this anyway. WATCH.

It was an interesting time. I would come into class with bruises from a botched IV and the inevitably tragic and clueless drug addict suggested to me discreetly that I shoot up behind my knee, so you couldn’t see it. Thanks.

The biologic didn’t work for me, and it kept not working for me. Timing, dosage, adding another drug, everything was tried. It’s a miracle drug, but it plain didn’t agree with me. I was symptomatic the whole time, but I powered through. I can do anything for sixteen months. I honestly thought Crohn’s was just an annoying thing I had to deal with. No big deal. To say that work didn’t suffer would be to lie, and to say that my home life didn’t suffer would be a lie, too. But when it came to cooking, when it came to being a student, I rocked the house.

By December, it started to unravel. My long, signature red hair began to fall out in patches and was replaced by a crusting rash, and I had do do creative styling to cover it. I started getting these weird rashes everywhere the sun hit. The Crohn’s symptoms got a little worse. My hips started to ache, my fingers got swollen and achy. No one knew why all of it was happening.

Ah, Dear Reader and Google MD, you’ve probably just diagnosed me with lupus. You would be half right. A rare complication of some biologics is a “drug-induced lupus-like syndrome”, and I hit the jackpot. I went to doctor after baffled doctor. Slightly positive lupus panel, an odd non-lupusy pathological report on a scalp biopsy, but no other evidence. I had an infusion one day, and then two days later my hair came out in handfuls. Everyone connected the dots at that point. It was February again, and I was halfway through my externship.

I switched biologics, was put on steroids and methotrexate to get the arthritis and fake lupus under control, and the Crohn’s flare too, while we’re at it. Frankly, I just wanted my hair back. I cut my hair short some time in January, and just shaved it off entirely when too much fell out to be able to not notice. I lost around 80% of it, and being bald made the dozen or so of weekly cortisone injections into my scalp easier.

If you’re wondering if I quit at that point? No. I still worked full-time, I finished my externship on schedule. By April, my hair was starting to grow back and the arthritis wasn’t so crippling. The other biologic started working and I was able to come off the other heavy duty drugs. I graduated second in my class.

“You cook like you have something to prove”

Yes. I do. I cook, like I do many things, like I am proving the universe wrong. It’s a chronic disease, not a death sentence, and if I go down, it will be fighting like hell. I will live normal, better than normal, and it’s balls to the wall from here on out.

I don’t cook for a living, now. I’m still in development. To paraphrase Anthony Bourdain, cooking is a young man’s gig. In the end, it’s better for my health (and my bank account) to not be professional chef, not full-time, anyway. I may get there one day, but for now, I’m happy working for the greater good and being very impressive at parties. I still win.


This Day in History

16 Jul

Six years ago today, I got married to Dr. (then Mr.) Horrible. We were wee babes. We were very happy, and we still are. Strategically, I also planned the wedding to be on my half-birthday.

Forever and ever, amen.

One year ago today, it was D-day. Five year anniversary. Mr. Horrible’s dissertation was due, and I had risky surgery to fix everything that went wrong after Anna was born. I was utterly non-chalant until in the prep-room, where I clutched a rosary, trying to remember the Hail Mary, and trying to extract life-force itself from it. The anesthesiologist, who looked fresh off a peyote ranch, was the catalyst. The reminder that you should not get sick in July didn’t help, and being introduced to the resident that would be in on the surgery. The beloved surgeon assured me, repeatedly, that she would be watching only. The last thing I remember, loopy on the versed they just dripped in before putting in the epidural, was telling them that the tattoo is intentionally funny.

Today, Crohn’s gets in the way of our anniversary yet again, but under much happier circumstances.


I am not running, but I’m cheering on those that do, and I’m so SO proud of what they do. The new normal works.

Still Life With Claims

1 Jul