Thursday, July 20, 2006

Garlic and Gluten-Free Guts

I just finished reading Ruth Reichl’s memoir, Garlic and Sapphires. The former New York Times restaurant critic’s sumptuous details and rich descriptions lured me in from the start, and I couldn’t help but think she had the best job around—and that no one in her position could ever be celiac.

I immediately decided I would one day add “four-star celiac food critic” to my list of professions. After all, I’d already become a natural at the art of mainstream fine dining, celiac style. I wasn’t about to let my condition scare me away from the champagne taste I somehow managed to keep up on my decidedly less sparkling budget.

When I first got diagnosed, I worried my dining out options would be permanently limited to plain grilled chicken and brown rice. I’d always been a healthy eater in that I avoided fried food, full-fat dairy, and starchy, processed carbs like white bread and sub rolls, but I was still an adventurous eater. The spicier the sauce or more exotic the marinade, the better.

Did this mean saying goodbye to piping hot Indian food, delicate Vietnamese soups, rich French sauces, authentic Italian entrees, and hearty Irish pub food forever?

So I did what any newly-diagnosed, slightly obsessive/compulsive celiac with a photographic memory would do—I immediately memorized the extensive list of “forbidden” foods I found online, learned how to scan ingredient lists in under 30 seconds, and road-tested the quickest route to Trader Joe’s I could find. I experimented with new recipes, and, most importantly, I learned from my mistakes.

Some people around me are still terrified to serve me food—eschewing a lifetime of tradition, my Italian grandmother won’t even cook for me, and my brothers still precede a visit of mine with several phone calls of the “what can you eat? Can you have X?” variety, but I am over it.

I’d always been the type of customer who hated to make a fuss—if my chicken was pink, I’d gingerly eat around the undercooked parts rather than send it back. If I got the wrong side, I’d pretend I genuinely liked brussell sprouts. But now that I knew I was celiac, I couldn’t be meek.

Preparation was the key to successfully dining out. When possible, I checked out menus online beforehand, making a shortlist of items I thought were “safe” so I could inquire about them. Sometimes I even called ahead to make sure accommodations could be made for me. I learned to be upfront from the beginning of the meal and wasn’t afraid to ask a lot of questions. When a waiter replied “I’m pretty sure it doesn’t have any flour,” I wouldn’t order until he’d physically gone to check into it.

I am pleasantly surprised by how many kitchens and servers are familiar with celiac disease. It’s music to my ears when a waitress says, “Oh, you’re celiac? No problem. I’ll show you the four entrees I know are safe, and can talk to the chef if you’re interested in something else.” A few times, a chef has gone as far as personally marking the menu so I’d know all my options. I remember the places like that and talk them up to everyone I know, and like Ruth Reichl’s focus on good service for every customer, famous or not, I also remember the places that couldn’t be bothered to answer my questions.

Wednesday, July 19, 2006

Why I’m No Prada-clad Devil—And Never Will Be

In an attempt to beat the sweltering heat and clear my mind of the (productive and meaningful) clutter that accumulated at the fellowship program I am in, I went to see the Devil Wears Prada last night. For a movie based on witty chick lit (as witty as chick lit can be), the film did not disappoint. I laughed at the appropriately snide comments and hapless “why me” moments.

But mostly I stared at Anne Hathaway. Tall, lean, runway-ready Anne Hathaway (well, after her character Andy finally gets a makeover). She was a goddess.

I watched her race down the street in skinny boots, clatter up and down stairs in stilettos, and traipse around New York and Paris in the highest of Jimmy Choos. Ouch. All I could think of was how sore and achy my joints get from one afternoon of very (very) low heels. Between joint problems (bad ankles and inward hips) and adrenal failure (which makes most of my major muscles weak and sluggish and incredibly painful even to the touch), fashionable shoes are not for me, however much I love them.

I marveled at the hours our dork-cum-party girl Andy kept. She complained about the late hours and early mornings, the events that lasted far longer than she planned and the trips that sprung up at the last moment, but frankly I was jealous. Even if I got offered the job “a million girls would die for” (like Andy did), I’d never be able to accept it. One day, and I’d be done. Whether I am tired from not getting enough oxygen or tired because my adrenal depletion is particularly bad, I am always tired and always pushing my body to get through the day.

The movie came at an especially interesting time for me since this week is the first time I have been in a 9-5 routine in three years. Ok, to be fair, my fellowship runs from 9-3 everyday, so it’s not even the full daily grind. But for someone used to a more erratic schedule—teaching and attending courses later in the day and writing all day beforehand—it is an adjustment.

The last time I was a 9-5’er was the year after college when I worked at a publishing company, and that was in the WA Era—the With Adrenaline Era. It’s only Day 3 of my fellowship program, and already I am seriously dragging. As in John needed to help me get dressed and drop me off just so I could attend and I am in intense pain dragging. I have a feeling tomorrow may be one of those days where I can’t move my legs enough to get out of bed.

Clearly, I am not made for the 9-5 world anymore. Even when my adrenal condition improves, with all of my lung and immune problems, I doubt I ever will be.

Overall, my more flexible schedule is dictated by what I do: teaching at the college level doesn’t require me to be present on campus 9-5, though certainly a lot of the prep work and grading takes place when I am not in the classroom. And the beauty of freelancing is that as long as I have my laptop, I can do my work anywhere. It’s not as if this was all b y accident, though. On some level, I knew I’d never quite have the stamina to run the rat race and stay out of the hospital.

A lot of people envy telecommuting, and for the most part, I love it. I am at my computer by 8:30 every day like everyone else, and I stop only for a lunch break. I don’t have to deal with the hassle of an early commute and when I am having a bad day, I can pace things accordingly.

But the downside is that there is no “off” switch for me, no way to leave work at work because my office is in my home. Compulsive by nature, I feel really guilty if I am at home and not working, whether that’s a Saturday afternoon or a Thursday night. It’s not glamorous, but it works for me.

So I will never be someone who totters around in Minolo Blahniks until 3 am. But I’ll probably always be the girl who clatters away on her keyboard in her pajamas.

Tuesday, July 18, 2006

When the Therapist's Away, the Dog Won't Play

My beloved therapist Steve is away for the week. Considering the guy sees at least three patients a day for chest physiotherapy on top of a full-time job, he deserves way more than a week's vacation. Selfishly, though, I am glad he never leaves Boston for too long.

Anyway, I can (and will) write at length about my unique relationship with Steve--besides my husband, no one sees me more regularly and no one has that much pysical contact with me--but today what's on my mind is the state of affairs when he's gone.

I recently purchased a contraption called The Vest. I always feel like there should be some segue into that, like Dum Dum Dum..THE VEST. It's an interesting (bizarre) contraption consisting of a generator that forces air into two tubes that attach to a vest that I buckle myself into snugly. When I rev up the frequency and speed, the air fills up the vest (I inflate like the Marshmallow Man) and vibrates rapidly, theoretically shaking the lobes of my lungs and loosening mucus that gets trapped there because of my PCD and bronchiectasis.

And it does--but it rattles everything else, too. It makes my arms and legs jiggle with every passing second (no amount of gym-going would protect me from this ugly scene), and when I try to speak, I sound warbled and almost like I am sitting on top of a washing machine moving at jet-engine speed.`

I don't know about any of you out there, but I find The Vest effective. Not nearly as good as the sturdy clapping Steve gives me, but it makes me cough often enough to feel like it's working at least somewhat. And failing everything else, it's a great party trick. I can't tell you how many friends of mine think it's really cool...until I strap them in and they realize it's actually not that cool to feel like the breath is getting squeezed out of you. They say it hurts, but by this point, I just find it uncomfortable.

The real issue with The Vest is that is it loud. LOUD. And my dog Sasha is a complete basketcase when it comes to sound. Seriously. She knocked over pans in the kitchen and went on a two-week hunger strike just to avoid being anywhere near the pans again. It was so bad we took her to the vet, who diagnosed her with doggie PTSD (post-traumatic stress disorder) and told us to put flower essence into her water to calm her down.

So, put a loud and potentially scary machine in the same tiny living room of my condo, and it's a bad day in Sasha's world. When it's turned off, she slinks by it, giving it dirty looks. When it's on, she dashes out of the room and cowers into the bedroom. After that, it takes her a few hours to even come near me again, and even then she somehow manages to give me a withering look.

Steve, come back home! As much as I miss you, Sasha misses you even more!

Sunday, July 16, 2006

What Bridal Boot Camp Didn’t Teach Me: How to be a Chronic Wife

When I got engaged, my mother gave me her yellowed copy of the Better Homes and Garden’s bride-to-be handbook. It was a nostalgic gesture since her mother had bought it for her, and much of the advice was charmingly anachronistic: gelatin molds were not in our meal plans, and I didn’t see myself having time before we both headed out the door each morning to arrange a multi-course breakfast, complete with freshly-cut flowers.

So the hardcover handbook made its way to bookcase, and a slew of bridal magazines soon took over the coffee table. I had no end of advice on how to choose dresses, where to go for a honeymoon, and what I should look for in florists. At my church’s marriage prep course, we spent a few evenings with strangers discussing our finances, spirituality, and sexuality. Slightly awkward, yes, but helpful.

Armed with all this engagement ammunition, I thought I’d covered all the bases. But what I didn’t stop to think about was exactly how I would approach being a Chronic Wife, and all the adjustments that entailed—and of all the roles and responsibilities my new life would demand, this was one of the most significant.

I’d gotten the role of Chronic girlfriend down well. There had been the initial hesitations—will he get scared off by all this?—and the pivotal breakthrough moments—realizing I liked having him there when I recovered from lung surgery and didn’t need to hide my realities from him. I loved that I had found someone who accepted me, medical calamities and all.

From the beginning, illness was a part of our relationship. Sounds obvious, yes, but it wasn’t always that easy to be forthcoming. Before we’d said “I love you” we’d battled through some scary infections and complicated procedures, so I knew we had what it took to face things together in the long term.

The hard part for me was that I was used to being the one in charge of my health, whether that meant deciding when to call the doctor or go to the hospital, deciding how many work-related projects to take on, or dealing with a new diagnosis. I turned to my family when I needed support or advice, because both my parents had been sick my entire life and understood my situation so well and my brothers were more than used to thinking in terms of chronic illness.

But now I needed to work John into this equation, terminally endearing and shockingly healthy John. On one level, I needed to break away from my habit of dealing with issues or making decisions on my own or with my parents. As my husband, he needed to be the one I turned to for this, just as I turned to him with everything else. He was willing and able, and I had to trust him with that one last piece of vulnerability.

But this was about more than whom I should consult when faced with a medical decision. On a deeper level, it meant realizing that each decision I made affected him, too. It wasn’t just about me anymore, or how much I wanted what I did to define me, not what I had.

If I took on too much work and my adrenal depletion worsened, he was the one who had to pick up the extra slack, whether that meant folding all the clothes I’d meant to finish, ferrying me around to do errands when I was too weak to drive, or skipping events we’d planned on because I couldn’t get out of bed. If I didn’t slow down when I had a respiratory infection and it lingered, it was John who spent nights sitting in a chair next to my hospital bed, sick with worry and exhausted.

Of course, I can’t always control when I have bad days—they are simply part of chronic illness—or when I get infections that won’t respond to medications and I need to be hospitalized. My husband understands that, just as he understands my need to keep pushing. But he’s helped me find a balance between the two.

What I can control are things like staying on top of my daily chest physiotherapy, making realistic decisions when committing to events or making plans when I am not feeling well, and pacing myself when it comes to figuring out how many writing classes I should teach each semester or how many freelance gigs I can juggle at once. The “old” me jumped at every opportunity without thinking, so eager to prove to myself that being sick didn’t mean I couldn’t do everything I wanted to do, and the old me often lived with the serious consequences of that.

I wasn’t going to drag John into that same old cycle.

The married me still has that impulse to jump each and every time I see a great writing gig, another section of a class opens up that I can teach, or I think of some new independent project I just have to start. I’d be lying if I said I didn’t. The difference is now I actually stop to consider the ramifications on my health and my marriage.

It’s good to turn to him when I make a decision, but even better to consider what my decisions mean for him before I make them at all.

Friday, July 14, 2006

It’s All Relative: Gaining Perspective in Maintenance Mode

After twenty-odd years of respiratory emergencies, bizarre infections, and multiple body systems going haywire at the same time, I am used to crisis mode. I studied for finals and wrote newspaper articles from the ICU in college, backpacked through Europe with a broken ankle and torn ligaments, and taught undergraduate writing classes so fresh from the hospital that I still had an IV in one arm and a hospital bracelet on the other.

My attitude matched my actions. During ambulance transport, I cracked jokes through an oxygen mask. I referred to spells where I was too run down to even leave the house as my “Boo Radley” days, and when innocent phlebotomists entered my hospital room to draw blood, I serenely offered them my ankles since they’d be hard-pressed to find a vein anywhere else.

And then something happened.

I got better diagnoses, more targeted treatment plans, and doctors who managed to unravel the thorny mess known as my medical history. I entered a hitherto foreign place known as maintenance mode. I wasn’t healthy in maintenance mode, but I was stable. Instead of the cycle of crisis-recovery, crisis-recovery that had shaped most of my life, I had series of so-so days punctuated by the occasional really good or really bad day. The difference was that the really bad days were not nearly and difficult as they had been, and the really good days were markedly better.

Sounds great, right? And it was. But it was also hard. I simply didn’t know how to exist without a constant barrage of setbacks and calamities, and I’d never had the downtime to evaluate how my baseline health status had changed over the years. While it was wonderful to not be in and out of the hospital as often, it was almost as tough to see for the first time what “everyday” health meant for me. Most days, I did have a hard time breathing, and that was never going to change.My energy level was still pretty low, but I began to see that the more carefully I planned my activities, the more successful they were. I stopped looking at life in terms of "getting back to normal" and realized that this new reality was my normal. There was no drama to eclipse the hard facts anymore.

It took awhile for me to relax enough to start making weekend plans with my friends again and be confident I'd feel well enough to attend. Slowly, I went through "re-entry" into the world of the healthy, and found my position within that world. While the wheezing and congestion had worsened over the years, they now fit in around teaching, writing, and getting to the gym. My daily chest PT visits were no longer my only contact with the outside world but were routine activities I scheduled into my busy days.

Maintenance mode, then, was largely about accepting realities that were so easy to ignore in the flurry of ER visits, CT scans, and IV lines. It was also the first time I’d really seen how skewed my understanding of “crisis” was. If I wasn’t turning blue from lack of oxygen or having some sort of cardiac episode, then that meant there was nothing really wrong, which I now see is a dangerous lack of a middle ground.

Luckily, I have an exceptionally healthy husband who helps in the ongoing process of defining things for me. Things like bronchitis, pneumonia, or kidney problems don’t faze me, but they certainly faze him. Somewhere in between my laissez-faire attitude towards anything short of near-death and his usual interaction with sickness—a seasonal cold or allergies—is the common ground I need to survive as well in maintenance mode as I do in crisis mode. The choices I make for my health no longer completely usurp the choices I want to make for my spirit and because of that, I no longer resent them.
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