Tuesday, May 18, 2010

The Whack-a-Mole Within

I spent the last two hours crying and reading What to Eat with IBD, a book by by Tracie Dalessandro, MS RD CDN (and IBD sufferer herself). IBD stands for "Inflammatory Bowel Disease," I think. Whatever, it includes Crohn's Disease, which was supposed to have much less control over my life after my surgery last August. I spent years of painful trial and error finding out which foods it was OK to eat and which exacerbated the pain and other symptoms of this puzzling auto-immune disease. Now there is this great book that distills everything I learned, and then some. I've tried for the last nine months to forget what I knew, but I was unsuccessful, and it's all rushing back.

"You have no restrictions on your diet now!" crowed the Seattle surgeon on my follow-up office visit after the surgery. He was SO wrong! Inflammation in the digestive tract can show up anywhere at any time when you have IBD. Even removing badly affected areas doesn't mean the inflammation won't just whimsically pop up in that very spot. It's Whack-a-mole, only I don't have a mallet.

Since August I've been joyfully eating things you probably take for granted but that I had not experienced in years: grapes, peas, big salads, sesame seeds, berries, whole grain foods--in short, most of the foods that have been found to be healthy for most of you. I thought they were now healthy for me as well. It's been so nice not to feel like a freak waiting for the Mother Ship to come take me home. I started having pain and fever about six weeks ago. My new desert gastroenterologist informed me on Friday that inflammation has shown up in places it never was before, that I need to stay on medication for the rest of my life--which may be shortened if I don't take meds--despite the fact that I have severe reactions to almost every medication the ingenious drug companies have devised to save your lives.(Would it be bad form to call that Northwest surgeon and tell him just how wrong he was? Yes, I know it would. I just want to yell at someone.)

I've been feeling sorry for myself for three days now. I think that's enough. It's time to go back outside at night and look for the Mother Ship. At least the nights are warm here in the desert, so keeping a lookout isn't such a chilly business. And now I'll slip back into restrictive eating patterns that will lessen my symptoms. Yep, I'm taking responsibility for myself instead of railing at gods and doctors (who sometimes think they are gods.) Maybe it's because I'm old and too tired to make a big fuss. Maybe it's because feeling better is more important to me than insisting I don't have to follow ever-changing rules. Or it could be that I finally recognize that I'm blessed in all the ways that count, among them good health care, caring people in my life, and so much food to chose from that I can eat healthily, no matter what my dietary restrictions.

Actually, this is progress. Only three days of whining and self pity! When I first found out I had Crohn's Disease about 25 years ago, I went into denial and didn't give up foods that hurt me (tomato-based foods, nuts, pepper, spicy foods, etc.) for three years. I was cocky for 20 years thinking I was getting away with something because I didn't seem to have many symptoms without medication and I didn't have to have surgery. But chronic inflammation is insidious and comes after you with quiet persistence until one day it leaps up with a "Bwah hah haha!" and drags you into the hospital.

I thought my reward for going through surgery was that I would get to eat berries again. I guess not. ("No, no, my Sweet--you get to do all that hospital stuff and you still don't get berries and fried chicken! Bwah hah haha!") Actually, the reward was that the doctor was able to remove enough damage to keep the Whack-a-Mole creature from shutting down my digestive tract completely. I could have had the wailing ambulance experience and emergency surgery--which I may or may not have survived. (OK, maybe I should be calling that Northwest surgeon and thanking him.)

Well-intentioned people have been sending me articles and news blurbs and suggesting alternative medicines since I was first diagnosed. I actually tried some things before I realized that natural or synthetic, most of the treatments involved ingesting something--and they all made me sicker. I thought I'd learned not to get my hopes up. But did get them up this time around. Having them dashed hurts. And yet...and yet...these nine months have been glorious. I had a reprieve. I savored the giant, juicy strawberries of California spring. I reveled in blueberry buckwheat waffles. I felt happy and hopeful that my life would be so very different. It was a good run.

Now it's likely that I'll have to eat the same few well-cooked foods over and over to minimize pain and inflammation. If the past is any indication, I'll spend about a third of my time too fatigued to do anything but move from the bed to the couch and the computer. That's just the way it is with auto-immune diseases.

It's not such a bad life, all things considered. Maybe I'll just lie back and read (or write) a good book while doctors search for a mallet to knock out the Whack-a-Mole.

Friday, May 14, 2010

Of Energy Shots and Smog Certs

In an amazing show of efficiency, the AAA -recommended gas station that Smog Certified my car completed the task within their 45-minute time estimate. Lucky for me, because they had no waiting room and it was 95 degrees outside. The guys from the garage graciously placed a folding chair in front of the boxes of beer inside the air-conditioned Mini Mart for my dog and me. They must not like unconscious clients littering the gas pump area.

"What?" I said, "I can have my dog in a food mart?"

"Yes," reassured the clerk, "because we don't have any open food here" (Or anything that can really be classified as food, I thought. But being old and finally getting wise, I said nothing.)

Little Oliver was content with his head on my shoulder and I was left to admire a wall. As I sat there, bemused as usual, I realized what an amazing wall it was. On five 5-foot shelves and three rows of hooks, this wall held pretty much everything people need to live their lives--or survive a disaster. It even had four rows of baseball caps up by the ceiling in case said disaster was a big wind that knocked everyone's USC and UCLA caps clear into Arizona. Instead of getting an earthquake kit, I may just take up residence in the Mini Mart.

The bottom shelf held cans of something called "Energy Shots" (clarify this for me, anyone who has been brave enough to ingest one of these), instant lunches and packaged meals that require no refrigeration. The shelf must have sagged dangerously at some point, because someone cut a broom handle off and nailed it to the center of both lower shelves with its tip resting on the floor. The second shelf had all the things you need but don't think about until you don't have them: toilet paper, bar soap, feminine hygiene products, eye glass repair kits, baby wipes, dish soap, and hand lotion. The largesse of comfort items made the mom in me practically giddy.

Lighter fluid (a must in disaster situations--especially if you have a lighter), pocket tissues, shampoo, mousse, shaving cream, teeth whitener, and toothpaste filled the third shelf. The fourth and fifth shelves were a miniature pharmacy, with cute little packages of everything from band-aids and eye drops to aspirin and every non-aspirin pain reliever known to man. My admiration for the person who stocked these shelves grew by the minute.

The three rows of hooks above the shelves were masterpieces of architecture and ingenuity. Hanging from a variety of industrial and homemade fasteners were knit gloves, playing cards, extra brushes for electric toothbrush thingies (well, what do you call them, anyway?), batteries, lint removers, fun cameras, razors, condoms, hand sanitizer, and something called "Stain Gone."

All this, and beer too. My, my. I was having a great time imagining people gathered round my little wall after a disaster, eating packaged meals, shaving, and listening to battery-operated radios while drinking beer and waiting for FEMA. But then the guys in the garage called my name. My car was ready and it was time to relinquish the folding chair and the great view of the wall.

With many thanks for the great hospitality, I paid my bill and drove out of there in search of a place with real food that isn't preserved in fat and salt for posterity--and future archeologists. The wall is great, but it didn't entice me to buy and consume anything on its shelves. I think it might take a good strong disaster to make that stuff look more attractive to the average female shopper.

BTW, my car passed the smog certification. Just one more step in my metamorphosis back into a Californian!

Energy Shot, anyone?

Saturday, May 8, 2010

Gorgeous Trumps Cranky

When the winds started about two weeks ago, I was enchanted each morning to find tiny yellow Palo Verde flowers and magenta bougainvillea blossoms floating in my waterfall pool. It was as if a hostess with a flair for beauty had decorated for a garden party. All it needed was a few floating votive candles. The next day, however, when the soggy flowers faded and sank, creating sort of a dirty looking flower soup, I was less enchanted.

Just now, with the thermometer in the shade of the covered patio reading 90 degrees, I was downright cranky as I scooped the soupy mess. The only thing that can make me crankier is having to replace the $85 pump--again--if the flowers clog it up. It didn't help that the plastic scooper--which resembles a flat butterfly net with no deep pocket--started bending and threatening to fall apart, and the 32-gallon can I got for the yard was too big for my 30-gallon bags. I clamped the bag onto the side of the can with one hand as it grew progressively heavier with the wet mess. I leaned forward to push the scooper across the top of the water with the other hand while being dive-bombed by various buzzing (and perhaps stinging) bugs. I was getting a new and very unappealing perspective on home ownership. Damn, I thought--not for the first time--I'm going to get this waterfall shut off. I thought about calling the City of Indio to trim their stoopit tree that leans over my back wall directly over the little pool.

Then I looked up. Graceful slender green branches with glowing yellow flowers backlit by a brilliant blue sky greeted my gaze. They swayed gently in a small breeze. A smear of white cloud that looked like a giant paint brush stroke added artistic contrast. Damn, I thought, this is glorious. OK, all is forgiven. Gorgeous trumps cranky every time.

I'll get new bigger trash can liners. I'll get a new scooper. And I'll fight the City of Indio to the death if they try to lay a hand on "my" backyard Palo Verde Tree!