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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.

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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.

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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.

The Loneliness of Soup

27 Jun

People talk about the first time they feel like a grown up. Getting married, having a baby, buying a house, bailing yourself out of overdraft fees, indignation at the state of young people, etc.

For me? The moment of adulthood came with the first miserable cold and the realization that if I wanted soup to make me feel better, I was going to have to make it myself.

You can’t get Jewish Penicillin out of a can, you can kind-of-sort-of-not-really get it from a deli, the Kosher New York deli notwithstanding. It’s not the same as the chicken cooking in your pot. The fumes are part of the magic.

It probably goes without saying that I’m the alpha and omega of cooking in this house. Dr Horrible could cook if he wanted, but the litany of questions would not be worth it.

How much water?
How do I cut up this onion?
What knife do I use?
How high do I turn the burner?
Do I add salt?

Bless his heart, or bless mine, because I just shoo his brainy butt out of the kitchen, through actual ignorance or artful manipulation, OUT OUT OUT.

Also? Few things make me more miserable than a cold. Having wound vac dressings changed and the Atkins diet are the only worse things I can think of right now. I can play through almost anything, but the damn rhinovirus knocks me on my ass.

So it was with snuffly, red-nosed misery that I came home and redistributed my chicken spaghetti ingredients to soup form, even on this 463 degree day. I could only perceive the salt and heat levels to be correct, but the family ate it. I guess it worked.

Mostly? Even now as a grown woman, when I’m snuffly sick, I don’t want to power through. I want my mommy.

And if the conclusion doesn’t make sense, it’s because I gave into Lady Nyquil halfway through. I’m so congested, I didn’t even notice it was licorice flavored until a couple minutes later. WHINE.

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Winning.

18 May

“You’ve got to work though, right? Or else the disease wins.”

I can’t find the words to express the rage, indignation, frustration, and helplessness I felt when my beloved doctor said those words to me about a year ago. I went into his office that day begging, pleading to write me off for disability. I was just sure I’d never feel well enough to work again. I was still working full-time, limping-along, really. As far as I was concerned, the disease had already won. I was so incredibly angry with him. I thought bitterly of the summer house I was sure he was paying for with my repeated visits and unrelenting suffering. Fuck him, I thought.

I found myself having to make the choices that are common for people with chronic disease. Do I make dinner or bathe the baby? Do I fold towels, or do I wash my hair? Do I play with the baby and hold off on taking the drugs that will alleviate the pain but leave me an unsafe solo caretaker, or do I get relief and hand her off to her dad for the night? My dressing is leaking, how do I take care of it at work? Where is that extra pair of pants I tote around?

Most of last year seems locked away in a very fuzzy place. Most of the time I’m still surprised it’s 2011.

You know what, though? He was right. He’s always been right.

Soon after that desperate visit, one of many I had between October and July, my second surgery was scheduled to close the fistula that had formed at the incision site. They would also go in and remove the ovary that had gone AWOL and “clean up.” At the time, it was an incredible relief, and I didn’t really appreciate the gravity of what exactly would be going on. Having to coordinate between several doctors, I should have. That was not a routine operation.

I was in so much pain by surgery day that I was taking the maximum possible doses of prescription painkillers, and they still barely touched it. I was seeing ostomy nurses at the hospital a few times a week to get the skin breakdown under control so that the surgeon could get a good closure. I think that was a low point, I would cry at the pain and the humiliation of having to drop trou in front of them without even the benefit of a gown and the pain of dressing and washing, because everyone has a breaking point. They chided me, telling me that people lived with ostomies their entire lives. I didn’t have an ostomy, I reminded them. It’s different when the body creates one on it’s own. In an incision. That sort of folded in on itself. In an awkward place to dress.

I was happy when surgery day came, and didn’t have the sense to be too scared. It took them around six hours to fix me. The ovary, fistula tract mess, and sigmoid colon had all stuck to my duodenum. If my abdomen was a map of the United States, Florida Nebraska, and Arizona were stuck to Oregon. I lost the ovary, of course. I also lost another six inches of small bowel, along with my sigmoid colon (I was told I wouldn’t even miss it – LIES). I got lucky he was able to keep the duodenum intact. He stitched in the staples on my intestine. My skin was closed with countless internal stitches and fifty-four staples.

Another nine days in the hospital. Better pain management, and when I went home, I felt better in those nine days than I had felt in the nine previous months. Not to say the road wasn’t hard, it was. Not to say I don’t have lasting daily inconveniences, I do. Not to say I don’t have periods where it becomes REALLY inconvenient and hopeless, I do. Not to say I’m not in remission in spite of all of that, I am.

After nine months at home with the baby, recovering fully, I went back to work. Petit Four and I were both pretty ready. It was to a point where I was no longer enough stimulation or entertainment enough for her during the day. I was starting to go nuts.

So with fresh terror and enthusiasm, I’m back in the work force. I do what I did before, for another great organization exactly aligned with my beliefs and interests, only on a larger scale. The adjustment has been rough, but I once again feel human and whole. The disease part is what it is.

I can’t wait to go back to my doctor that wouldn’t let me quit and tell him he was absolutely right. As long as I’m working, there is no way for the disease to win.

And to tell him to enjoy that summer house, because he’s earned it.

Grandma’s Banana Bread

4 Feb

I come from a long line of good cooks. My grandmother was not exactly one of them. She was a pretty good baker, but her general cooking? Eh, sawdust pork isn’t my favorite. Her banana bread, however, was delicious.

She had  a habit of keeping little notebooks everywhere. In these notebooks were everything from phone numbers to measurements for a pattern to doctor appointments to recipes to anything. Often, she had more than one of these going at once. She didn’t have a central notebook or book where she kept her recipes. When she died and I went through everything, I collected the notebooks I could and scoured them for the banana bread recipe. I found every other recipe she ever used or clipped out of a magazine, but not that one.

I’ve been trying many banana bread recipes since then, trying to replicate Grandma’s. They all were good, but not the same. I knew the flavor and texture I was going for.

My mom recently passed along a couple of cookbooks, one of hers and one of my grandfather’s. There are recipes and stuff scrawled over the inside covers and blank pages of both of them, but imagine my surprise when I happened upon this in Grandma’s 70’s copy of the Joy of Cooking:

In case you can’t quite make it out, here is the simple recipe:

1 cup Shortening or 2 cubes margarine, 1/4 tea salt, 4 eggs, 2 cups sugar, 4 cups flour, 2 tea (baking) soda, 6 bananas, 1 cup nuts

Bake at 375*, 1 hour – Put all in bowl and beat hell out of it

When I read the instructions, I literally laughed out loud. These are the sort of instructions I write for MY recipes. I’m more, um, vulgar. My grandmother hardly ever swore, but when she did it was a terse and shrill “wellSHIT!” that meant your day was likely going to hell.

But! For the sake of family recipe preservation, I decided to make it exactly as written, going totally against all of my training and instincts.

First off, this makes a lot of freaking banana bread. Air Force wife, you know. I realized about halfway through that my two bread pans were probably not going to do the job, but went on anyway. Grandma always did two flattish loaves, but she must have halved it.

Also, I was taken aback by the sheer amount of fat and sugar just wantonly thrown into a quickbread. And that’s when I knew the crunchies were getting to me. It can’t all be egg-free, whole wheat, probiotic, rainbow spouting loving whole food, now can it? Sometimes we need some cake disguised as a bread for breakfast.

Moving on.

I did make one concession to culinary knowledge: I mixed the soda, salt and flour first and added it to the wet stuff.

My mixer, Julia, beating the hell out of it, as it were.

Yes, my mixer has a name. She lives on the counter, doesn’t she? It’s a place of honor.

I loaded two alarmingly full bread pans into the alarmingly hot oven. This is what I had after 20 minutes:

Shit.

I knew they were going to burn. Committed to my cause, I just threw foil over it and turned down the oven a touch. And hovered. And poked. And said “wellSHIT!” a lot.

Love you, grandma.

Yep, they burned. This is what I was left with at an hour and 20, when the skewer test finally came back clean. I had a childhood memory of always having dark banana bread. They were still perfectly edible, if not a bit dry.

So, changes I will make next time: Cream together shortening and sugar, then add eggs, then add bananas, then add a tsp of vanilla, then add the mixed together dry stuff, and beat it only until it whines a little bit. Probably then put into 3 or 4 pans, and maybe even bake at a lower temperature. I want to keep the integrity of the recipe I’ve searched for for years.

A word on whining

18 Jan

Humility is highly overrated.

I hate hate HATE when people hear of one’s misfortune and say things like, “at least…” “be thankful that…” “it’s God’s will…”  “Listen, when I did Unrelated Thing X, I handled it just fine…” All of those things do not help. There is a time for a good old-fashioned cowboy up speech, but for the most part, these things make people feel crappy. Guilty. Worthless. Weak.

There are instances where a good, solid whine is wholly appropriate. Sometimes the cards you’re dealt just suck. It’s ok to say it sucks. It’s ok for someone else to say to you, “yeah, that sucks.”

It doesn’t mean you’re dwelling on it, it doesn’t mean you’re not thankful for all of the great, wonderful things in your life. No one should have to be a hero in the midst of their turmoil.

When someone dies of illness or after a long struggle, so often people say, “he never complained”. I’m not sure why this is what we choose to brag about. Complaining is good, it gets out some of the gnarly feelings. It helps beat the guilt beast at bay. It makes having a good attitude that much easier.

Next time someone tells you bad news, feel free to let them know you empathize that they got a bum deal. Let them get it out. You may be their only opportunity.

Gutsy.

14 Oct

So I have Crohn’s Disease. In case you don’t know what that is, it’s one of the most undignified of the auto-immune diseases. It doesn’t have the fame of arthritis, it hasn’t inspired one of the more asanine diet fads of the decade. [Sidenote: The gluten-free diet sucks. It’s hard to be nutritionally sound and you’ll someday miss pizza.] With Crohn’s Disease, for some reason your immune system recognizes input into the digestive system as poison, and narrows and ulcerates intestine (though it can happen anywhere from mouth to anus). Most commonly, it affects the terminal ileum, which is the last part of your small intestine.

They don’t know what causes it, there is no cure, and the treatments are underwhelming and dangerous. But less dangerous than the progression of the disease. Potentially. It depends on the severity of your disease.

I didn’t believe it until the last year, but Crohn’s Disease is a Big Fucking Deal. I thought it would be an embarassing inconvenience and maybe some planned surgery someday. Ah, the ignorance of youth and/or denial.

In my case, symptoms started after a monster bout of mono the summer after my first year of college. Just a constantly upset stomach, and I was always really anemic. I also lost a lot of weight, but that had a lot to do with the increase in activity level and gross dorm food. I kept my frequent bathroom visits a secret, no one knew. I once mentioned my frequent vomiting and bathroom trips to the health center doctor, and I was sent to the nutritionist for an eating disorder consult. 165lbs and complaining of frequent vomiting. Same doctor also suggested a rare red blood cell shrinking genetic disorder that affects primarily those of Jewish or Arab descent for my anemia. I’m not either. Clinical judgement WIN!  

Sometime during junior year, I got a stomachache that sent me to the ER. I can only describe the feeling as a crunching feeling, like my stomach was trying to eat itself. They couldn’t find a cause. Gave me some vicodin and sent me home. It happened a few more times and I was sent to a gastroenterologist. The gastroenterologist did an upper endoscopy, found an ulcer, and wrote me off as a hypochondriac student that drank too much. When I called saying the nexium wasn’t helping, the nurse wouldn’t return my call.

I went along, tra la la. Graduated, got married, moved to Texas. Visited a doctor who I now know immediately wrote me off as a hypochondriac, but seemed concerned enough at the time. I was given the blood test for celiac disease and one of the markers came back positive. She discouraged me from seeing a gastroenterologist to confirm it with an endoscopy since it was diet controlled anyway. I listened. I stayed on the diet nearly a year.

That marker I had was the least specific, and also shows positive in Crohn’s.

I finally went to see a gastro because I wasn’t getting better. He did a small bowel follow through, which showed narrowing in the ileum. I had a colonoscopy which showed inconclusive lesions, but the diagnosis of Crohn’s Disease was made after a gene test confirmed it. This was in November 2007.

He tried Pentasa, which failed. Then in February, he put me on Remicade, which will get its own post later. I got better then not, better then not, screwed with the dose, bla bla. Then almost a year later my hair started falling out and I was crippled with arthritis and yeah, no more Remicade. I was put on a trifecta of pharmaceutical awesomeness: Prednisone, Methotrexate and Humira. I was put into some kind of remission and ended up just on Humira and my hair grew back and et cetera. I felt well enough to get the blessing of my medical team to get pregnant.

Crohn’s was the least of my pregnancy risks, the clotting disorder considered to be worse, so I was seeing a high risk OB anyway. In spite of a number of perplexting but unrelated complications, Crohn’s wise? I felt pretty good. Better than ever.

The thing that we didn’t pay attention to, and didn’t and wouldn’t have been seen with testing, was that toward the end, the baby kicking really hurt. I chalked it up to a lowered pain tolerance, the doctors chalked it up to my guts being sensitive, and it hurts some people.

This will also be another post unto itself, but at 36 weeks pregnant (8 months) (pregnancy math is weird), my bowel perforated. Humira and the hormones had managed to mask what should have been the mother of all flares. Three and a half feet of diseased intestine was removed. What happened after that, another post still.

I had a brief affair with Cimzia, but the reaction was similar as with Remicade, so we broke up. I’m now on a high dose of Imuran, and we’ll see if it works. I have no idea as I can’t tell a flare from normal now, because normal is decidedly NOT. I’ll have another colonoscopy sometime soon to see, since my symptoms (ie: pain) can’t be trusted.

That’s where we are. Though I’ve only been diagnosed for three years, I’ve had the disease eight or nine years. I’m hoping and hopeful that the road ahead is smoother.