Five Things on a Friday

So, I blinked and weeks have passed since my last post. The usual spin cycle—mothering, writing, being sick, tending to a sick baby—is the culprit but we’re all on the mend and enjoying summer. (The parks! The playgrounds! The beach! So many new things for little eyes and hands to explore…)

(And, somehow, the chapters are slowly coming together. Time is not my friend these days, but such is life, right? There is nothing as clarifying as a deadline, there is nothing as clarifying as a deadline…)

With lots to write but scattered focus, here we go—five things I’m grateful for this Friday.

1.Friends. I know that might sound trite, because really I’m always grateful for my friends, but more specifically, I am grateful for the chance to see my friends. Between a hectic schedule, illness, and in a lot of cases, geography, I don’t get to see a lot of my long-time good friends as often as I’d like. Recently we all coordinated schedules and met up for a quick weekend in Washington, DC, home to our alma mater, Georgetown. Husbands came to help with babies, babies met friends from afar, and it was great. I’ve had to miss the majority of weddings, reunions, trips, and other events over the years because of being sick, and it was so nice to have everything work out this time. (Special thanks to T for being an amazing hostess!)

2.Flying. Again, let me be more specific—I am grateful I was able to fly. It has been years since I’ve been on a plane, between the usual illnesses, plus the high-risk pregnancy and germ lockdown, bed rest and then having a newborn and young infant with some health problems. And while I always come home from a plane trip sick, it was so worth it to get a brief change of pace. (Plus, Baby Girl’s first flight went so well—she smiled away and then slept the entire flight, both ways.)

3. Food. Specifically, feeding Baby Girl food. When she turned six months old, we started solid foods and a sippy cup, expecting both to take awhile to catch on. However, within a couple weeks, she was on to three solid meals a day and using the sippy cup exclusively, save for one bottle at bedtime. She had feeding problems as a newborn, has reflux, and has multiple food allergies and intolerances at this point (hoping she outgrows them all!) so it is amazing to see her enjoy eating so much and thriving. She is small for her age but one look at her chubby cheeks and thighs and it’s clear she is doing great. Everything we’ve tried with her she loves, from chickpeas, spinach, and broccoli pieces to steak, sweet potatoes, and rotisserie chicken (her favorite!) (Next up? Quinoa!) We’ve made all of her food from the start, which is super easy and a lot of fun, and since she’s been feeding herself with her pincer grasp for so long, she can pretty much try anything at this point. If she ends up with long-term food allergies or is celiac, I want her to know so many good foods exist and I don’t ever want her to feel hemmed in by dietary restrictions. While so much can change, for now she is an adventurous and happy eater, and I hope it lasts.

4. Flexibility. I admit, the spring semester kind of chewed me up and spit me out. There were too many major things to juggle, and my body paid the price. I love what I do and really enjoy my students, but I have never been more grateful for the summer break than I am this year. Working on my book full-time and having the flexibility with my daytime hours to do a lot more with my daughter is wonderful. It’s an iteration of the semester: if I am willing to do a lot of work late at night, early in the day, and any spare time, I get to do so much more with my girl—and while the book situation is pretty intense right now, we are having so much fun, and I am really looking forward to the rest of summer and watching her grow and discover new things.

5.Facebook. There are a lot of things I don’t like about FB and I have my personal page fairly limited in terms of access, but there is a lot I find valuable, too. My book page is a good way to connect with readers and have an ongoing conversation, which keeps things dynamic and relevant. I like the power of FB to harness people together for a cause, which is what has it on my bullet list today. My husband’s company, The Well Fed Dog, is supporting dogs/animals displaced by the recent tornadoes in our home state of Massachusetts. For every new FB member who joins/likes the Well Fed Dog Facebook page, we’re donating to the Dakin Valley Humane Society, which suffered significant damage in the storms. So if you’re on FB, click on the page and help the WFD assist these animals in need!

And, because it makes me smile and it’s Friday so why not smile, a recent pic of Baby Girl:

Food Allergy Love Stories...and a Giveaway!

So, remember when I talked about striving for balance just a few short weeks ago?

Ha!

Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.

Everyone's a Critic

Before my daughter was born, I bought all kinds of books: infant development, breastfeeding, sleeping, etc. I pored over various titles online, reading through reviews and comments, and dog-eared pages for information I thought might be important.

And then she was born, and aside from the basic medical and developmental stuff, I rarely looked at any of them. Instead, I focused on getting to know her, and figuring out her cues so I could respond to them appropriately. All the books on sleep methods? Not nearly as helpful as paying attention to when she was getting tired versus overtired, and facilitating her in getting rest when she needed it. She naps well and naps regularly, she has a regular bedtime that evolved based on her signals, and she sleeps through the night in her crib. She loves her sleep, and thankfully for us, that’s always been part of her disposition.

With sleeping, feeding (I could write a whole post on the immense challenges of feeding this child), and other basic stuff, we figured out what worked for her and for us, and how we do things might not work for other families and other babies.

But with babies, sleeping and feeding are two of the most heated topics, and everyone has an opinion. From co-sleeping to cribs to bottles versus breast, the comments, opinions, and “advice” abound. Recently I read Natalie’s post where she reflected on the judgment/surprise people had when they heard about her particular sleeping arrangements. Her methods aren’t what would work for my family or my child, but they suit her baby’s needs and her needs as well.

As I read it, a post from Gluten-Free Girl and The Chef was still fresh in my mind. In it, Shauna discussed how critical we can be of one another’s food choices, how convinced we can become that our way is the right way, the only right way, instead of accepting that there are many, many “right” ways.

How many times have people told you what you should eat, or how you should cook it, or what you should avoid consuming? (Never mind what you should feed your kids!) I don’t mean the friendly advice we get, or the tips we get when we solicit help or feedback, but the unsolicited comments that really seem to imply we are doing something wrong by doing things a different way.

Sometimes when I read the comments section on online newspaper articles, or the back and forth on popular blogs, I am aghast at how judgmental people can be. Even the online reviews of the baby books I looked at were antagonistic, as if we are divided into non-attachment parenting types or attachments parenting types an never the two shall meet, as if breastfeeding versus formula feeding was somehow an indicator of maternal worth, as if how and where and for how long babies sleep is a measure of parenting success.

It boils down to lack of perspective, I think. Part of that is human nature and inevitable, but part of it is an unwillingness to see things from other points of view. In the spheres of chronic illness and infertility, lack of perspective and its close cousin, competitive suffering, are common:

People who don’t live with constant pain don’t always get why people living with pain can be unreliable, or doubt their pain altogether. People who are healthy don’t always understand how physically and emotionally draining chronic illness can be, and don’t think to check in on that. As a recent tragedy with someone I care about illustrated, people who do not look at life through the veil of depression might not see why things could look overwhelming to someone else.

We all judge sometimes…perhaps too quickly and easily.

People who have gone through multiple reproductive interventions might not have patience for people who think a few months is a long time to not get pregnant. People who are always in and out of hospitals might not see why a short hospital stay or simple procedure is a big deal to someone else.

We all compare sometimes …perhaps without considering that someone’s pain is big and real and present to them, and it does not matter what our own take on that pain is.

There is always someone convinced that if we eat this, or try this treatment, or follow this protocol, or read this one book, our problems will be solved.

We all think we have the answers sometimes…perhaps without considering that there really are many ways of doing things “right,” and what “right” constitutes varies so much depending on background, lifestyle, religion, family, etc.

The first time I had to supplement breast milk with formula was really hard—in my head, my body was letting me down, I was letting my baby down, and so forth. The amorphous “they,” the peanut gallery that dwells in the recesses of my brain, was working overtime. But as my husband pointed out, the most important thing was that my daughter was adequately fed so she could grow healthy and strong…and whatever combination of nursing, pumping, and supplementing that took was the “right” way for us to feed her. I think a lot of us can find similar parallels with this situation in the ways we negotiate and accommodate illness.

Sometimes the biggest challenge isn’t simply what others say, but having the confidence to carve out a different approach in spite of it.

Seeking Simplicity

I’ve been quiet lately, but I want to thank everyone who has continued to check in on me, leave comments, and send e-mails. Your ongoing support and encouragement means a lot!

So, I’ve been working on this post on dealing with the medical establishment and being an active participant for a couple of weeks now. It has languished three-quarters of the way complete for several days, yet I just can’t pull it together.

For one, I’ve never found it useful or interesting to write about not feeling well or detail a list of what’s wrong. If I can take those illness experiences and draw something larger from them, great, but short of that, those kinds of posts don’t do much.

But there’s something else going on. I’m at the hospital several times a week for tests and appointments. I’ve spent too much time on the inpatient labor and delivery floor for someone who has not yet delivered.

I have participant fatigue, people.

And if I’m this sick of the medical establishment, that definitely won’t make for worthwhile reading.

So, I’m writing about blueberries.

Yes, blueberries. Aside from a brief flirtation with clementines in the first trimester, blueberries are my biggest (and really one of my only) cravings this entire pregnancy. It’s like Christmas morning to me when my husband comes home from the grocery store and tells me it was “buy 2, get 1 free” day for blueberries. I eat them by the handful when I need a snack. I eat them on cottage cheese for breakfast or lunch. I never tire of their crisp, sweet, yet pleasantly tart taste.

They are so simple and refreshing, a one-ingredient snack I just need to rinse and eat.

And simplicity is more important than ever when you’re gluten-free and pregnant. After all, being celiac has a lot rules and restrictions, and the dietary guidelines for pregnant woman are not insignificant.

The way I look at food has changed over the past 33 weeks. There is a lot more compromise and negotiation. I started eating (some) dairy again, trading off the phlegm-producing effects for the calcium-rich benefits for the baby. I never drank juice because I don’t like consuming a lot of sugar, but now I mix cranberry or orange juice with sparkling water and know that the baby loves it because she kicks vigorously.

There is also a much bigger desire to follow the “less is more” mindset when it comes to ingredients, and the negotiations continue. For example, I was thrilled to find a popular brand of yogurt that labeled several flavors “gluten-free.” I didn’t have to scour over ingredients, check corporate statements, etc to get some calcium (and coat my stomach for the many pills). Yet these flavors also included a lot of additives and two types of artificial sweeteners, which while cleared by the American Pregnancy Association, are still things to watch.

So what’s the lesser evil?

Spend some time clicking through the Center for Science in the Public Interest’s guide to food additives, and you’ll start reading those labels more carefully.

It’s a tough balance, because I am loath to obsess over every single recommendation and guideline, and I want to enjoy healthy food, not be scared or overly limited by it.

And that’s how we get back to the blueberries. We’ve always had a household low in processed foods but that’s more important to me now than ever. It is easier to eat fresh fruits and vegetables, all-natural peanut butter (nothing but peanuts on the ingredient list), freshly popped corn on the stovetop, and lean meats, chickpeas, and other legumes than it is to navigate multi-syllabic preservatives.

Plus, if you’re watching sodium intake like I am, the sky-high sodium levels in processed foods are another turn-off.

My life is completely overrun with complications and competing health priorities right now. I don’t need to deal with them when it’s time to eat a meal.

Simplicity wherever and however I can find it is so important right now. Luckily for me, my cravings seem to get me just what I need.

A High-Risk Pregnancy by Trimester

We last spoke about chronic illness and weather, and then it went and got all humid on me and I fell into a black hole for a spell.

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester*
*I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester*
*Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

Gluten-Free and Pregnant

I’m being totally honest when I say that I am glad I was diagnosed with celiac disease. When you live with a lot of conditions that are hard to treat and manage even with lots of medications, knowing there is something wrong you can manage through what you eat alone is a liberating, empowering thing.

Most days, I barely even think about being celiac. The way we prepare food is now more of a lifestyle than a dietary chore. I know what questions I need to ask, I know the ingredients to look out for, and I know the best places for me to eat. I am always vigilant, of course, but it’s not like I wake up and think about eating gluten-free as a challenge or as deprivation.

I realize not everyone feels the same way, and I totally get why people take awhile to adjust and grieve over many things they can no longer enjoy. But for me, the diagnosis was a turning point, and brought about many positive changes in my attitude towards food.

I’ve always been ridiculously conscious of what I eat. Spend a lifetime (literally) on steroids, and you spend a lot of time passing on birthday cake (at your own birthday), sticking to the salad bar, and wondering at what point a diet consisting of 95% vegetables and chicken/fish will work for you. (You also break tons of bones, destroy your adrenal system, and have lots of other fun side effects but I digress.) In those days, though, I was focusing on calorie content, not necessarily quality.

All that changed when I began eating gluten-free, and I now find satisfaction in knowing how few ingredients are in each of the meals I eat, not how many calories are there.

I’ve noticed a further evolution in my attitude towards food since I became pregnant. On the one hand, I am more vigilant than ever about cross-contamination and accidental “glutening.” Coupled with the dietary restrictions all pregnant women are encouraged to follow regarding caffeine, certain fish, shellfish, lunch meat, soft/unpastuerized cheeses, alcohol, etc, there are certainly many things to keep in mind and avoid.

And I’m not going lie—with weeks and weeks of violent and long-last morning sickness (at one point I was conducting virtual office hours with a bucket in one hand and typing with the other), the idea of a simple saltine was (is) appealing.

But I don’t find the dietary limitations, well, limiting. I feel really good about what I put into my mouth. You see on message boards sentiments like “whatever you eat the baby gets first” and my doctors tell me the baby takes what he/she needs from whatever I eat. I’ve gone back to (limited) dairy consumption for more calcium, and started eating breakfast every day. Knowing the bulk of what my baby gets comes from cottage cheese, vegetables, nuts, yogurt, and lean proteins makes me feel like no matter how wacky my body is and how medically intensive this pregnancy is, I am doing something right for this kid. No processed food. No junk food. Nothing overly salty or fried.

Sometimes it is challenging to balance my (many) medications with prenatal supplements and vitamins since some need to be taken on an empty stomach and others on a full stomach, but I’ve incorporated smaller snacks throughout the day and have found somewhat of a groove.

Because I had to go back on steroids at one point in this pregnancy, and because of my history of steroid use and related problems, I am at an increased risk of gestational diabetes. We’ll see what the test reveals, but in terms of what I eat, I know I am doing what I can to set us both up for a healthier outcome.

Why I Participate in Medical Research

Um, it’s March.

How did that happen? In a blink, the late classes that used to start when it was dark now only end in the shadows of dusk, and tiny shoots of early spring flowers are poking through slushy dirt.

It’s been awhile. Actually, it’s been the longest stretch of time in between posts I think I’ve ever had. Usually, silence equals bad news in my world, but thankfully my absence is not the result of acute illness and fragmentation like it was when I made my confessions here last March.

Instead, it’s just a lot of medium-sized things piling up, leaving me standing in a pile of excuses and hating hearing the words coming out of my mouth.

You see, I meant to write a post this weekend in honor of Rare Disease Day, a cause that means so much to me. But I was out of town and then I got glutened, which totally threw me off my game. It’s a few days late, but my meek attempt at fulfilling an obligation I feel strongly about is to instead point you to my Rare Disease Day post from last year, since all the points still ring true.

(How ironic is it that on the heels of my last post on restaurants doing more to accommodate food allergies I went and got glutened for the first time in quite awhile? And this was after speaking with both an employee and a manager and being assured beyond all doubt the marinade on the chicken did not have wheat. Super. I know it wasn’t the lettuce underneath the chicken that made me wretchedly ill…)

And I meant to write and submit a post for this edition of Patients For a Moment that answered the questions: What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

But I didn’t, because each night that week I came home with the best of intentions but by the time I battled traffic and had chest PT it was already 8pm and I hadn’t started dinner and my work inbox needed me and man, my brain was tired. And as much as I wanted to elegantly dissect the ramifications of being a lifelong patient and never knowing what it was like to live without illness as my near-constant companion, I couldn’t get the words from my brain to the screen.

See? Excuses. Valid and truthful, yes, but in the end, meaningless.

But there’s something else I’ve been doing the past few weeks (months, really) that I don’t need to make excuses for, something that relates to the Rare Disease Day and to our identities as patients.

I’ve been participating in research studies. From broad public health studies launched in the ER to short, three-week surveys to long-term trials with blood work and follow-ups, I’ve jumped in whenever I’ve been approached by a research assistant. Sometimes, the studies have little value to my personal situation but are part of worthwhile projects in communicable diseases or prevention. Other times, the studies are directly related to what I live with and am going through.

I am not exaggerating when I say I wouldn’t be alive and certainly wouldn’t have the quality of life I do have were it not for medical research, for the thousands of participants or “subjects” who have volunteered for studies before me and for the researchers and scientists who launch these investigations.

From my point of view, any time I can participate in a research study it’s a tiny way of giving back, and of hopefully contributing to something that will positively impact other patients down the road.

For rare disease patients, the need for research is especially critical. So it may be a few days late and it may not be an official Rare Disease Day post, but consider this my public service announcement for the week.

And at least this is something I don’t have a lame excuse for these days!

Gluten-Free Dining, With a Side of Controversy

A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

Thyoliday Blues and Truths

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you've been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.


Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

Grateful...

Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

Are We Being Too Tolerant of Gluten-Intolerance?

“Are we being too tolerant of gluten-tolerance?” is the question Slate’s Daniel Engbert explored earlier this week.

Now, I have a lot of thoughts about the points raised. However, I also have a lot of thoughts about another post I’m writing on disability vs illness, the interviews I’m doing today, and all the stuff I’m supposed to pack for a “working vacation” that starts tomorrow, so I’m going to tackle some of the major ideas briefly.

Honestly, based solely on the headline I thought the piece was going to antagonize me (proof it’s a smart headline, no?) but I found myself agreeing with some of it. Of course, where I found myself nodding in agreement were the most obvious distinctions, but they’re important ones nonetheless. Using Elisabeth Hasselbeck’s best-selling book The G-Free Diet and the booming gluten-free food industry as context, Engbert establishes that:

“The lavishing of attention on wheat alternatives is wonderful news to the sufferers of celiac disease, for whom any amount of dietary gluten can inflame and destroy the lining of the small intestine." Naturally I agree with this; in the five years since I was diagnosed, both awareness and availability of GF products has really increased. More restaurants have GF options, labels are more clear, and more GF alternatives line the grocery store shelves.

(As an aside, does anyone with celiac disease actually use the term “G-free” in public? No seriously, I’m asking.)

Yet I don’t think I’m the only one out there who has witnessed the downside of the popularity of eating GF. For example, because it is known that people without celiac are opting for the GF lifestyle anyway, there can be less urgency about making sure meals in restaurants are actually GF—the occasional eye roll or dismissive glance that means the person I’m talking to half-wonders if I’m avoiding gluten simply to lose weight or something.

I should add here that Engbert makes the distinction between celiac disease and gluten-intolerance pretty explicit; it’s the people who reside on the spectrum of intolerance who don’t have the full-blown autoimmune response to gluten but feel better when they remove it he’s worried about:

“I'm all for people eating what they want, but lately I've started to wonder how gluten intolerance might relate to a more general anxiety about food… Any kind of restrictive diet can help alleviate gastrointestinal distress. If you're paying more attention to what you eat, there's a good chance your symptoms will lessen.”

He goes on to say, “It's well-known that our digestive system adapts its secretions (rather quickly) to whatever we're eating.” By extension, then, removing all products with gluten and then consuming some after a prolonged period could make you feel sick, thus enforcing the idea that you are gluten-intolerant.

(I can vouch for the fact that my husband went GF for a month to see what it was like and when he gorged on starches his first meal “back” he felt awful. Was gluten a shock to his system, or just a sign he overate in a way he didn’t when he was eating GF foods? I’m not convinced either way, but I know he felt pretty miserable.)

I know a type 2 diabetic without celiac who removed gluten from his diet and experienced dramatic reductions in his insulin needs—was it because he was somewhere on the sensitivity spectrum and removing gluten improved his digestion and absorption of foods and that somehow influenced his metabolism of insulin? I’m not an endocrinologist, so I can’t say. But could it be something as simple as removing gluten meant removing the more processed white starches and carbohydrates that spiked his sugar?

I don’t have the luxury to “slip up,” nor am I qualified to dissect those who are gluten-intolerant—we face many of the same challenges and gains in eating GF.

I guess my point is, to me, it doesn’t matter—in my example of the diabetic, the end result was that he felt better and needed less insulin. That’s the important part. If the gluten-intolerant have their own health improvements, that's a good thing.

I live GF and have no regrets—I eat whole, fresh vegetables, complex grains with plenty of fiber like quinoa, and consume no processed foods. It is not without sacrifice or expense, but in many ways, I see it as a much healthier way to prepare and consume food. If others choose to do the same and experience the same benefits, that’s great.

And here’s where Engbert’s argument gets a bit more interesting. He parallels the rise of eating GF with other diet trends, like Atkins, at the same time admitting he doesn’t think people who choose to go GF are simply secretly trying to lose weight:

“When a restrictive diet becomes an end in itself, we call it an eating disorder; when it's motivated by health concerns, we call it a lifestyle. It might also explain the relationship between food sensitivities and fad diets: People who are intolerant of gluten or lactose get a free pass for self-denial.”

Not to use the word “sensitive” too much, but I am particularly sensitive to this association between elimination and health. After all, I chose to go dairy-free even though I’m not lactose-intolerant because it helped decrease mucus production. That got a few eyebrows. And when I eliminated sugar and yeast for nine weeks due to my intense antibiotic regimen that wreaked havoc in my GI system, I got more eyebrows.

I consider these moves wholly health-motivated, so my choices would be classified as “lifestyle” ones by Engbert’s definition. But from the outside, perhaps they appeared otherwise to other people?

At the end of the day, I can’t worry about or judge the dietary choices others make or what they think of mine, so I’ll leave this where Engbert does—all this awareness is truly a good thing for celiacs, as well as the people who have celiac but have not been diagnosed yet but have a better chance of it now.

Do I think we're "too tolerant?" No. Do I think extremes exist in every situation? Sure. Is that a reason to decry real progress for so many people? No.

On Listening and Judging

I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.

Making Gluten-Free Eating Easier

My recent foray into eliminating sugar and yeast from my diet have me thinking a lot about what I choose to put into my mouth. As an almost six-year veteran of living gluten-free, I’m used to doing that, of course, and I’ve written before about how I view my celiac diagnosis as full of opportunities, not restrictions.

While there are always occasional missteps or awkward experiences, after all this time I don’t stress too much about what is safe and what isn’t. I have my regular favorites recipes and my grocery store routine down pat. I’m comfortable asking questions in restaurants, and know to look for the “secret” sources of gluten that can make me sick. At this point, I think one of the more challenging parts of celiac disease is making other people comfortable and familiar with what I can and can’t eat. I don’t want relatives needlessly worried about giving me roast potatoes or rice (for some reason, the fact that they are starches used to make them think they weren’t safe), and I don’t want to cause extra work or concern for them.

I’m fortunate to be able to say that my friends and family are wonderful—they want to include me, and often branch out into things they might not have cooked before because I’m around, like risotto or polenta. They do their best with what I know is a steep learning curve.

That learning curve—the same one newly diagnosed celiacs also face—just got a little easier. I recently had the change to speak with the lovely people at Zeer, which is a “food information resource that makes it easy to find safe food. It helps people save time, stay safe, learn particular diets and live better lives.”

In response to the active, passionate gluten-free community on their review site, Zeer created Zeer Select, a subscription services for gluten-free shoppers that launched just a few weeks ago. The services includes a database of 30,000 food grocery products (a number that will keep growing), each labeled with a gluten-free safety status. (Not to worry—each product is evaluated by a team of physician and dietician experts to verify the safety and accuracy of the labels.)

Products are coded as either being gluten-free (safe), appearing to be gluten-free, or containing gluten. The ingredients for each product are included, so if a product is not specifically labeled gluten-free by the manufacturer but none of the ingredients are known to have gluten, the consumer can read them and make the decision to purchase it or not. Of course, for products that are not safe, the actual source of the gluten is noted. Users can search by food type, brand, or UPC code, and features like a list of suggested alternatives for “unsafe” foods are really helpful.

First of all, I always like to hear when a company pays attention to its customers and responds to their needs. Zeer did not start out customizing in gluten-free services but saw how engaged its gluten-free members were and things emerged organically from there. Secondly, Zeer Select fills a void in the online gluten-free world. Often, when you Google gluten-free foods, lots of recipes, blogs, and commentary pops up—which is great, but if you’re looking for grocery items, it is much more difficult to isolate the answers to your questions.

I spent some time on Zeer Select, searching for specific brands and specific items, like salad dressings, and found it really easy to navigate. If you’re interested, click on over and you can take a tour, too. The service is $14.95 a month, and they plan to build out the intelligence to include other specialized plans, like dairy-free, casein-free, and vegan diets.

If you’re newly diagnosed and not sure what you can and can’t put into your grocery cart, you will learn a lot from this service. But as I think about the ups and downs of the past six years, I realize it’s not just the newbies who benefit—the people around us who want to learn and cook for us and with us do, too.

(Food Allergy Buzz wrote about the launch, too—check it out to hear what others are saying.)

While we’re talking about celiac disease, Scientific American just published an in-depth article about celiac disease and autoimmunity—definitely worth the read!

Don't Know What You've Got Till It's Gone

I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

When the Familiar Becomes Something New

We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I'd spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Thank Goodness I Like Vegetables

I realized just how much my lifestyle has changed over the past few years when a recipe for a weekend dinner party called for sugar, and I didn’t have any. Nor did I have artificial sweetener, artificial sweetener that looked and tasted like sugar, or anything else sweet, save the maple syrup we bought for when my niece slept over several months ago.

On the one hand, I felt a bit domestically delinquent. We usually had some on hand for company, but beyond that, isn’t sugar one of those staples every kitchen needs? Then again, we don’t usually have flour of any kind, either.

As I’ve written before about the evolution of my gluten-free life, I’m more the “explore naturally gluten-free foods” type of girl than I am someone who looks for gluten-free versions of “normal” food—but I recognize that’s just personal preference and that each person needs to do what makes the most sense for his/her circumstances.

Lately, it seems like celiac disease is popping up everywhere. Of course, there’s a certain celebrity’s newly published book stirring up a lot of comments, but there’s more to it than that. The other day at Gluten-free Girl, Shauna mentioned how many new products and companies are now on the market offering gluten-free baked goods, mixes, etc. In my own area, I’ve recently discovered that restaurants like Papa Razzi and Charley’s offer gluten-free accommodations, and I love hitting up regular spots like Jake’s Dixie Roadhouse, which has a GF menu and strict cross-contamination measures.

What’s more, the amount of people around me who know what celiac is or have just gotten diagnosed with it is growing.

“Do you think it’s like food allergies, where more and more people get celiac now?” someone asked me.

“Honestly? I’m no expert, but celiac is so often missed because it is so tricky to diagnose. I think the reason more people are now told they have it because awareness has grown; patients think to ask their doctors about it, and doctors think to check for it, even when “classic” symptoms might not be there,” I said. These are people who may have suffered for years without knowing why.

Anyway, all this is to say that much has changed since I was first diagnosed five and a half years ago. I can’t believe it has been that long. I’ve learned how to make a lot of new foods, I go out to eat without fear or hesitation, we’re growing our own vegetables in our yard, and I’m even in a supper club whose members view the challenge of GF cooking as a good one.

But now there’s a wrinkle. No, it’s not dairy; I cut that out two years ago. No, it’s not processed food; that went out the window a long time ago.

I’ve mentioned before what an soul-crushing, lung-battering winter I had this year. (Okay, maybe slightly dramatic, but it was Not. Good.) As a result of that seven-month siege, I am on a very aggressive, very long-term suppressive course of rotating antibiotics. I don’t talk about it much because there are so many strong opinions about these medications out there, and yes, they are overused by people with colds and yes it’s a problem…but for people like me, they are, quite literally, a lifesaver. Not only do they save lives in acute infectious situations, but they can also help slow down irreversible lung damage. If it’s a choice between several weeks a year as an inpatient and trips to the ICU and suppressive treatment that actually gives me some quality of life and helps control the many infections I get, it’s a no-brainer.

But my aggressive treatment is not easy on the body, most notably the stomach. As evidenced by lots of GI issues and a lovely film on my tongue, my long-term use of these meds has given me candida, an overgrowth of yeast in the intestinal tract (it happens when meds kill the healthy gut bacteria) that spreads throughout the body. Lovely.

The treatment? Well, coming off the meds isn’t an option right now, so I’m trying to follow the candida diet, which essentially means eliminating all sources of sugar, yeast, and fermentation in the diet. Now, clearly I don’t eat a lot of sugar but it’s more complicated than that: naturally occurring sugar in fruit is out; vinegars, salad dressings, honey, tomatoes, white starches…all out. The list goes on, trust me. Again, not the biggest deal since I don’t eat some of this anyway, but if you’ve read Life Disrupted you know how I feel about my honey mustard dressing.

Now, my lunch of green beans and chickpeas is a bit sad and lonely.

“Um, so what do you eat?” a friend asked, knowing I limit animal protein to once a day.

The list is short.

When I was first diagnosed with celiac, I never went through an angry stage or mourned all the things I couldn’t have; I was ecstatic there was something wrong with me I could actually fix. (This doesn’t happen often in my world.) I’m channeling that sentiment to this latest dietary challenge—I feel pretty crummy so if taking these steps can improve things even a little, it’s totally worth it to me.

But if you have any pointers, I’m listening.

What You Eat and How You Feel....

What’s your cooking personality?

I took a quiz in the NYT’s Well blog recently and my results were a mix of healthy and innovative, meaning I like to experiment and rarely use recipes, I enjoy using fresh ingredients and spices, and I rely a lot on fresh vegetables and healthier proteins. The point of the post was to discuss how strong an influence the person who buys and prepares food has over household consumption, which I find interesting as well as totally logical.

(I should add here that several days into a lingering stomach flu, I am taking a huge leap writing and even thinking about food. Pedialyte and tea is more my speed right now.)

Anyway, in my more normal solid food state, we have a team approach to buying and preparing food because we both enjoy cooking and we each have complementary goals: I want lots of greens, lots of fiber, and a lot of heat; my husband is especially particular about preparing quality proteins and is always looking to try new preparation methods and new combinations.

Our meal planning has evolved a lot since we first met and started cooking gluten-free; since then, I’ve eliminated dairy and gotten a lot more adventurous, and we’ve both become committed to eliminating processed food. If I think about that in terms of the article on cooking styles, I’d say we’ve both influenced each other’s meals, though in different ways.

I realized our overall grocery store expedition can be boiled down to “Lean proteins, preferable whatever’s on sale, and vegetables.” In addition to lots of herbs and spices, we have lots of vegetable and chicken stock on hand, as well as bulk quantities of quinoa, brown rice, polenta, and risotto. As long as there’s some olive oil and garlic in the house, we’re set for the week and can do many different things with these core ingredients. (Of course we buy other things to supplement breakfast and lunch, but this is the crux of it.)

I found myself telling one of my doctors this last week after a strategy session to map out a way to control my dubious immune system and lungs these days. He was very interested.

“Do you notice you feel better when you eat certain things and worse when you eat others?” (Keep in mind, “feel better” in a lung doctor’s office means, “How is your breathing?”)

I mentioned that I gave up dairy voluntarily to cut down on mucus congestion and that I could tell it made a difference on the very rare occasions I’ve eaten it since: I am much more wheezy, and I cough a lot more. But beyond that, I haven’t really thought about how specific foods may or may not influence inflammation in my airways. I’ve been so focused on the macro—put good things into your body, and hopefully good things will happen.

So my new challenge is to be a more conscious eater, to slow down and think about how I feel and how I am breathing after different meals. It takes time and effort to eat gluten-free, whole foods and keep it economical; if I can parse out added benefit for my lungs themselves, then that’s great.

What about you? Have you noticed you react differently to certain foods (excluding any food allergies/intolerances, of course)? And if you take the quiz, don’t hesitate to share what your cooking personality is!

* * *

In other health-related news, I’ve written before about the effort America’s Agenda Health Care Summit Conversations is making to bring consensus to health care reform. Now, there’s a way you can participate in the movement as well. They are sponsoring a virtual marchto let Congress know how health care costs affect your daily life. You can join the Facebook page, send a photo of yourself, and tell your story. We can’t all be in Washington, but this is one way to get your voice heard. Check it out!

Food Matters...

This was the post I planned to write:

“I have to confess, I haven’t read Mark Bittman’s Food Matters yet, but I am intrigued by what I read in this review. A 'Guide to conscious eating' seems especially appropriate this time of year, when we tend to focus on eating well and starting new habits.

As a celiac, I am gluten-free by necessity, and as someone with chronic, progressive lung problems, I am dairy-free by choice. As I’ve written before, I no longer see this lifestyle as one of food exclusion but as one with a different set of possibilities. There is no question I feel better without gluten, and if the removal of dairy has made my congestion even a little better, it’s worth it to me.

I don’t plan on altering this combination too much, but I’ve thought a lot about how I want to embrace the spirit of change in the New Year. Over the past few months, I’ve shifted towards less animal protein and more plant sources, until somehow I found myself not having any animal protein until dinner, and sparing amounts at that. When I read how Bittman and a colleague embarked on a 'vegan until six' endeavor with limited simple carbohydrates to improve their health (there are lots of environmental reasons behind his choices too but I am focusing on health), I thought, 'Huh. Who knew it had its own catch phrase?'

It’s really not too much of a shift from what we’re already doing in our household—planning meals in advance, making things from scratch in larger quantities for later use, shopping the perimeter of the grocery store. In essence, I’m continuing to swap out my midday protein for a plant-based one. But the difference is that now I am doing it more consciously. High cholesterol and cardiovascular disease run in my family, and I figure I have enough issues as it is.

I know many of you out there have made lifestyle changes and dietary changes that aren’t necessary for medical conditions (like going gluten-free if you’re celiac, for example) but have made a big difference in your health and in controlling chronic conditions. What has made the biggest difference, and do you have any regrets?”

So that was the post I had set in my mind until I received an e-mail about Share Our Strength’s “Operation No Kid Hungry” campaign to raise funds to help end childhood hunger and encourage Americans to hold food drives within their own communities. According to Share Our Strength:

“This campaign responds to President-elect Obama's call to
action for corporations to serve our nation's communities and builds on his commitment to end childhood hunger by 2015.”

I got to know this organization when I wrote a newspaper article on Operation Frontline, a nutrition education program for low-income families. It was then that I really started to see that conscious, healthy eating can be affordable and manageable.

Share Our Strength is running the campaign to coincide with Martin Luther King, Jr. Day, and there are two ways we can all get involved:

1. Text "SHARE" to 20222 on your mobile device to donate $5. AT&T will match all text donations up to $100,000.

2. Holding food drives within their communities beginning Monday, January 19th, which is Martin Luther King Day and a national day of community service.

Visit Share our Strength for more details.

And then I thought about how much food really matters, and how lucky many of us are to have the luxury to decide just how conscious our eating can be.

The Evolution of a Gluten-free Thanksgiving

This is the week of food posts, no? This is also the first time I’ve had any real interest in the actual meal part of Thanksgiving in years. We’re hosting it, and even before we pick up the turkey and other fresh ingredients next week our pantry and refrigerator are already getting full…and I’m really excited to prepare it all.

Honestly, not being able to eat a lot of traditional holiday dishes has never been a big deal to me. I ate my plain turkey, my peas, and called it a day. I didn’t compare gluten-free stuffing recipes or gluten-free pie ingredients, and I didn’t ask for or expect special dishes. The stuffed mushrooms I always make happen to be gluten-free, and even though I’m now dairy-free and they’re no longer safe for me, I make them anyway—they are a crowd favorite.

From feedback I’ve heard from other celiacs, it seems like the hardest Thanksgiving meal is the first one after diagnosis when you’re still getting used to the gluten-free diet and missing favorite foods. I got diagnosed right before Christmas and spent that Christmas in the hospital, so I didn’t have option of acclimating my condition to holiday traditions—clear liquids are neither festive nor gluten-y. By the time the next Thanksgiving and Christmas rolled around, I was so focused on keeping my lungs stable and my body out of the hospital that what I ate seemed inconsequential. I get the frustration or even anger people may feel when they need to give up certain foods, but for better or worse, that hasn’t been my experience.

Besides, going GF made me feel a lot better, and that trade-off was always worth it.

And in a way, not much has changed. Considering last Thanksgiving my jaw was frozen shut with an infection and I could only have broth through a straw, I’m happy just to be able to chew this year. I’ve always been a lean protein and green vegetables kind of girl, and that remains true on Thanksgiving. I know there are all sorts of approaches in terms of eating gluten-free and it’s just a matter of preference. Mine has always been to focus on what is naturally gluten-free and explore those possibilities. It’s not the only way, but it’s my way, and that’s the spin we’re adding to the traditional family menu this year.

I want my mother’s famous stuffing at our table, just like I want the derby pie my husband loves, the ricotta pie my grandmother makes, and the buttery potatoes my brother considers a deal-breaker. I want everyone to have their favorite things.

But I’ve started to make an effort to have my favorites, too. I don’t miss or resent what I can’t have but I do want to share what I can have, so we’re adding small touches to the meal. We’re making the roasted Brussels sprout hash we both love, and we’re adding cranberries and toasted almonds. We’re making naturally GF cornbread to go along with the rolls. There will be no GF dessert option because I don’t eat dessert, but there will be plenty of coffee and perhaps the port that several of us like to drink.

At the end of the day, what I can or can’t eat is much less important to me than being healthy enough to be at the table and enjoy my family. I said it last year but it’s just as true for me this year—it’s the people at the table who create holiday memories, not the food.

(I do hope they like the roasted Brussels sprouts, though!)

Looking for ways to customize your gluten-free Thanksgiving? I’m not much of a baker so don’t listen to me. Trust Shauna at Gluten-free Girl, who has compiled a list of sure-fire recipes.

Celiacs aren’t the only ones who face challenges in the holiday season—diabetics and people with other conditions that mean dietary restrictions have a lot to juggle, too. There are several people with diabetes in my family and lots of friends with food restrictions, and I know it can be a tricky time for them, too. Check out the holiday sweepstakesover at Diabetesmine.com. Share your diabetic holiday tips and strategies and you could win a ton of cool prizes.

Stay tuned for a post that’s less about what we eat and more about the giving thanks part of Thanksgiving…

Gluten-free Eating on the Cheap

I’ve been working on a project these past couple of weeks that has forced me to pay even more attention to the cost of food during these tight economic times. This article on what a modern depression would look like suggested a possible upswing in eating fast food and starchy, processed food because they are cheaper, and I couldn’t help but think even more about the future of healthy eating.

As a patient with celiac disease, I’ve grown used to the fact that eating gluten-free is expensive. Whether it’s dining out or cooking at home, there’s no way around the fact that many of the cheaper items out there are off-limits.

The trade-off, of course, is that fresh and/or whole foods are healthier, and my meals are higher in fiber, lower in sodium, and much more diverse than they would be were I not gluten- (and dairy) free. While sticking to this lifestyle will never be inexpensive, there are definitely lots of things GF shoppers (or anyone with a limited diet) can do to maintain their diets without breaking the bank. Here are some strategies to keep in mind as budgets shrink and costs increase—none of them are earth-shattering and they certainly aren’t the only ones out there, but they are things I think about and try to practice regularly:

1. Personally, I try to stick to foods that are naturally gluten-free, rather than buying specialty pre-made items (bread, pizza crusts, pasta, etc) that approximate products with gluten and cost more. I’d much rather buy a bulk bag of brown rice or risotto and have that with my stir fry or as a side dish. Same thing with polenta—it’s cheap when you buy it in bulk and is really versatile in terms of spices and mix-ins.
(Note: I’m not much of a bread/baked goods kind of girl, but I know celiac patients get good results with breadmakers, and that it’s cheaper than buying pre-made GF bread).

2. We like to make soups and turkey chili a lot, and buying dried beans and lentils makes a lot of sense if you’re going to use those ingredients often. Certainly store-brand canned beans aren’t too expensive, but they can have more sodium than I’d like and they’re still not cheaper than dried beans. (Just make sure you give them plenty of time to soak. The infamous “crunchy” turkey chili of July 4, 2008 taught me that lesson.)

3. Plan meals around vegetables in season—not only does it make for more creative meals but you’ll spend less. If your recipes call for vegetables not in-season, frozen vegetables are more affordable and have many of the same health benefits as the fresh kind.

4. Make the most of every ingredient you buy and purchase items that can work in several different meals/recipes. For example, we’ll buy a whole chicken when we see it on sale and roast it, using some meat for that night’s meal and setting aside portions to use in soup and on salads later that week. Then we take what’s left and make a huge pot of chicken broth out of it. We use some of it for soups that week, and depending on how much we make, we freeze containers of it to use when we make risotto or polenta and want the depth of flavor broth adds over water. (You can find store-bought broth that is gluten-free but it’s often too salty and I really prefer the taste of homemade broth.)

5. Lastly, it sounds obvious, but pay attention to sales and specials. If you’ve planned out meals with one type of protein and another is one sale, think about substituting. And of course if you see GF specialty items or proteins on sale, stock up on them and keep them in the freezer. Take-out can really add up and is often limited in terms of GF-availability, so give yourself options.

While they are not major changes they can really make a difference for anyone dealing with dietary restrictions. If you’re looking for more ideas, Gluten-free Mommy has a great post on eating gluten-free frugally.