All posts by esammarie

I was diagnosed with both celiac disease and dermatitis herpetiformis in 2009 and have been strictly gluten free ever since. Even my cats are gluten free. I love life and I love sharing new ideas, experiences, insights, successes and lessons learned....even if they have nothing to do with gluten or being gluten free because life is a series of research trials and you never know what you'll discover!

Morality and Medical Issues, Part 2

Tuesday’s post challenged the notion, debunked by gobs of science, that illness and disability somehow are the results of moral failing. After I posted, I went running–it’s my primary treatment for fibromyalgia and for guarding against a host of other ailments–but I couldn’t escape a nagging feeling about the post.

A few blocks into the run it hit me: I feel guilty about being sick.

Again.

Still.

Damn.

I really do believe the God of my understanding isn’t doling out diseases and disabilities as punishment. I absolutely can’t get behind a god who zaps a beautiful baby/child/youth/adult/mother/father/sister/brother/friend/foe with ___ (insert name of a disease or a disability) because he or she or his or her kin didn’t read the bible enough/didn’t attend church enough/wasn’t pure enough/wasn’t repentant enough/ committed some litany of sins. I’d like to think God has better things to do than play whack-a-sinner, although whack-an-a*hole has a certain dark appeal, at least in the abstract.

The problems with the illness and disability as moral failings theory are legion. First, there’s the scientific evidence, which I discussed in yesterday’s post.

Next, I don’t know about you, but I can’t keep track of what’s considered a sin and by whom. I think the biggies are pretty universal, like murder, and yet, there’s war and the death penalty so there’s even grey area with this one. That’s the problem with concepts like sin and morality: there are all these grey areas, all these rationalizations, justifications, conditions. Murder’s wrong, except when it’s state-sanctioned, some say. Others say murder’s wrong unless it’s in self-defense and then others say even that’s wrong.

Some folks think it’s a sin to eat meat on Fridays while others say the sin is eating meat at all. Some say alcohol is sinful while others insist on imbibing it as part of the sacrament of communion. Some folks think premarital kissing is sinful while others say kissing is fine but anything more could land you in spiritual hot water if you aren’t married.

Marriage. Now that’s a subject that can land you in a pickle, but the kind of pickle differs according to which piper’s playing the pickled pepper tune. Sinfulness lurks in every matrimonial corner, begging a host of questions. How many times can you marry or remarry and who can you marry and who can marry you? What has to happen during the ceremony to ensure you won’t end up on the no-spiritual gifts list? What about your intentions regarding offspring, especially if childbearing might not be in your–or the child’s–best interest? The questions go on and on and the answers are as plentiful and as diverse and as controversial as the questions themselves. One man’s happily every after could be another woman’s death everlasting.

Plus, when it comes to linking illness with immorality, what’s the degree of sin required to yield disability? Are the wages of sin paid on a sliding scale? Is every person with cancer a super sinner while those with recurring infections frequent delinquents? Can you do enough to atone for your sins and thus be cured or are some things etched in permanent marker?

It’s all so grey and plaid and cross-hatched and full of one side versus another. It gives me a headache . . . and a heartache. And it makes me disbelieve the folks who say people who are chronically ill are spiritually unfit.

And yet, here I find myself wondering if even a little bit of my health is linked to a less-than sinless past, and if so, which one of my sins is responsible for the celiac disease and which sin’s fruit is fibro? They have to have different sources, I’m thinking, given the diseases activated twenty-plus years apart. Or, maybe they really are because my grandfather ran rum for the Mafia during Prohibition in Jersey City or because he and his father beat up a priest. (They had good reason: the priest locked my grandfather’s little brother in the basement of the church for several hours as punishment for not knowing his Catechism. When my great-grandfather confronted the priest and demanded the little boy, who had missed dinner by this time, be freed, the priest refused so my grandfather and his father knocked sense into the cleric. The little boy finally was freed but my grandfather had to quit school before he finished the 4th grade. Who’s the sinner here?)

The current uproar about repealing and replacing the Affordable Care Act is taking a toll on me in ways I hadn’t recognized until now. It’s personal. Those elected officials and pundits bloviating about who really needs health care and what’s wrong with those of us who can’t seem to get it together enough to stay healthy are talking about me. I’m one of those people for whom the Affordable Care Act was a real game changer. It enabled me to get medical treatment I otherwise couldn’t afford. I still had to pay thousands of dollars out of pocket for said care, but thousands are more manageable than tens of thousands. When they talk about “those people,” judging “them” for their moral failings and laziness, they’re talking about me.

I’m not perfect. I have made mistakes, some pretty major ones, but I don’t think I’m so sinful I deserve to suffer for the rest of my life, and I don’t believe you deserve to suffer, either. We don’t deserve to be sneered at by suits who think they’re better than us because they clutch more cash in their claws and can spit specious soundbites deep into the shadows cast by a gold-plated dome.

I am doing my best to do as much good as I can with the gifts and talents God has given me–illnesses and disabilities included. I know you are, too. When it hurts too much or I’m too sick to work, which happens, when I’m splat out like a dark-furred cat on a hot July day, it’s not because I’m lazy or I’ve been struck by the devil. It’s because I’m sick and I hurt too much. My gut is twisted not because I’m immoral, but because I’ve been glutened–again–and my intestines are being attacked and damaged in an uncivil war scientists still don’t completely understand.

If morality and health are to be connected at all, let’s remember that we are each other’s keepers, and that whatsoever we do to the least of us, we do to ourselves and we do to the one who created us. Instead of questioning the morality of those of us who are sick, question the morality of turning your back on us. We are you.

 

Illness Is Not A Moral Failing

Screaming loudly from more than a corner of the quest to repeal and replace the Affordable Care Act is this notion that moral, upstanding people take care of themselves and do not get sick; therefore, they do not need guaranteed health insurance or subsidized premiums to make insurance affordable. This line of thinking suggests we who have chronic illness somehow bring the malaise upon ourselves. We don’t lead clean, healthy lives; instead, we make bad choices which lead to our illnesses. If we put our money on organic food instead of smartphones, I’ve heard said, we’d be healthier. If we pulled ourselves up by our bootstraps and worked to become wealthy like regular Americans, rather than laying around bemoaning our ailments, we’d stop being a drain on the economy . . . and we wouldn’t need to see the doctor so often.

The trouble is, science doesn’t support this kind of thinking. Having a chronic autoimmune disease like celiac disease as I do, or Sjogren’s as my sister does, or ankylosing spondylitis as my other sister does, is more a fuction of genetics plus environmental risk factors than of moralilty. Continue reading Illness Is Not A Moral Failing

Gut Instinct: Finding Stealth Gluten

I’ve delayed writing this post because I wanted a big reveal. Last post I talked about the surprising news from the gastroenterologist that my serology showed evidence of ongoing gluten exposure. I’ve been reeling, trying to find the source. Where is the stealth gluten?

Where, oh where, is the stealth gluten?

After emailing several manufacturers to get reassurances on some beloved faves, and getting no reply from a few (I’m talking about you, Dial soap: just because you’re my husband’s fave doesn’t mean I can’t kick you to the curb), I put my new Nima sensor to work. Continue reading Gut Instinct: Finding Stealth Gluten

Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

Continue reading Gut Instinct: In Search of an Answer

Complicit in Oppression: What I, a White Person, Must Do to Stop It

I have not written for this blog in the past year because I was busy being a newlywed. That silence ends today with a post that doesn’t talk about gluten. It talks about something even more sickening.

This post sprouted from a conversation I followed on Facebook. The conversation was started by a beautiful woman I had the privilege of learning from when she was a student at the university that employed me (and also is our alma mater). I still learn from her, ten years later, as she challenges white people me to understand and confront our own racism and its crippling, killing effect on her and all people of color.

She said she doesn’t trust white people. A large number of her friends admitted their distrust, too, a distrust we white people have earned with our mercurial support for civil rights and equal rights. We show up when it suits us, and when we show up, we twist the whole thing to suit us. We want “credit” for supporting Black Lives Matter with our signs and bumper stickers but where were we in the demonstrations and marches against racist police brutality? We marched en masse for women but our pussy hats all were pink (didja think about the colors of women of color down there?)

Continue reading Complicit in Oppression: What I, a White Person, Must Do to Stop It

Accessorize Snow Wise

There are so many pretty ways to realize your theme for a wedding without causing yourself to cringe when you later look at the photos. I’d be cringing right now if I’d gone all out, say, with a wedding gown or even bridesmaids’ gowns embroidered with snowflakes. I did investigate options for about a day before deciding classic with a sprinkling of snowflakes was the much better way to go. Looking now at the pix, I am glad I did.

I can thank my my dearly departed mother, who had strong and wise opinions about how far to take a theme. I remember her planning a Halloween-themed birthday party for my sister one year when we were kids. She went all out on the decor but drew the line on serving guts in blood (spaghetti and sausage in tomato sauce). It’s all fun and games, she said, until a kid runs home crying about being forced to eat a bowl of guts and a piece of bone meal cake. Who wants to answer that call, my mother asked, especially if the little party-goer ended up barfing on the new sofa once she got home?

I never forgot that bit of advice and it’s served me well.

Continue reading Accessorize Snow Wise

A Little Flakey on the Decor

With Winter Wonderland as our wedding theme, and our wedding scheduled for January 3rd, we made things easy (and inexpensive) on ourselves with respect to decor and accessories. Planning the wedding during the Advent season meant both online and bricks and mortar retailers were all flaked out, and willing to discount, for the season.

The ridiculous popularity of the Disney movie Frozen contributed even more snowflake-themed products to the marketplace, both a boon and a bear. Sure, there were  more flakes available in September and October, but the aqua and purple hues didn’t quite  complement our wedding palette of midnight blue, silver, and grey, nor did the ubiquitous character visages. “I do and Olaf does, too,” just didn’t seem romantic…or age-appropriate. Talk about the need to let it go.

A word about snowflakes. The snowflake seemed the perfect symbol for our wedding. Each one is special, with its own design and its own purpose. One snowflake by itself is nothing much but when it joins with another snowflake its power and purpose are multiplied. Like the snowflake, we are stronger together than we are on our own, yet we retain our unique purpose and design within the relationship. We are snowflakes and even when it gets warm and we might melt, we simply change shape and flow on. It’s an imperfect simile but it worked better for us than guns and grosgrain. Continue reading A Little Flakey on the Decor

Let’s Makeup

When’s a good time to try new makeup? A) When the dermatologist tells you the ridiculously itchy, scarring rash on your elbows, knees, shoulders and shins is dermatitis herpetiformis, an autoimmune disease linked to celiac disease; B) when the gastroenterologist tells you the DH diagnosis is spot on because the biopsies of your small intestine plus the blood tests all say celiac disease; C) it’s the holidays; or D) you’re getting married.

I go with E) all of the above.

When dermatologist said I had DH, I had no idea how radically my life would change. When the GI doc handed me the celiac disease diagnosis–wait, he didn’t hand it to me or even tell me face to face. I got the happy news in a form letter sent by snail mail: “the results are consistent of a celiac disease diagnosis. Start the gluten free diet,” was all it said.

Given no guidance by the doctor, I dug up everything I could about the two diseases on the Internet. I ordered books from IMG_7865Amazon. I subscribed to magazines like Living Without, the Gluten Free Living, and Simply Gluten Free.

I learned that I had to change not only my diet, but also every pot, pan, utensil, and dish with which I cooked and ate.

After a month of constantly being glutened and having no idea how it happened, I realized I had to change all my health and beauty aids, too. Some posts and pamphlets I read said not to worry about your soap, shampoo, body lotion, facial moisturizers and even makeup, except for lipstick, because you don’t ingest them. Others said absolutely be fanatical about them because, honestly, how many times a day do you touch some part of your skin or hair without even thinking about it and how many times do those same fingers put something into or touch your mouth?

Plus, how do you keep the rinse water away from your mouth when you cleanse your face or wash your hair? I can’t.

If there’s a chance that even tiny bits of something could end up inside me, it has to be gluten free. End of GF soapboxing. Continue reading Let’s Makeup

Gut Reaction to Fashion: Choosing a Painless Gown

Twenty-one days after my reproductive organs were yanked through my birth canal, I  accidentally went wedding dress shopping.

I don’t recommend this.

I don’t recommend any kind of shopping three weeks post surgery, unless you traverse said shopping emporium by way of velvet-lined, pillow-packed coach and are accompanied by people who fetch what you want and bring it to you. Bonus points if they pay for it, too.

I especially don’t recommend jamming yourself into couture created by camouflaging cinching corsets with swaths of satin and silk that some commission-currying consultant will clamp so snugly to your corpus you can’t cough, all to show you how to look like a million skinny bucks. Continue reading Gut Reaction to Fashion: Choosing a Painless Gown

Receptively GFree (No Cross-Contamination)

Finding a caterer who not only understands what gluten free means (it’s not, “just avoid the  couscous on the buffet”) but also has the knowledge and expertise to cook 100% gluten free is a challenge. Finding a caterer who can cook delicious AND affordable gluten free food–no $2 upcharge per GFree roll–sounds like an impossible task.

When planning my wedding, I queried a dozen independent caterers as well as in-house caterers at special events facilities in and around metro Atlanta. Several didn’t even bother to answer me. A few seemed to confuse gluten free with the Atkins diet. “We’ll do an all meat and no carbs dinner,” one offered.

Another said I could just take the rolls off my plate and they wouldn’t put gravy on my chicken breast but everyone else should have the gravy because not having the gravy would made the dish less spectacular.

Uh, no, thanks.

My favorite response was, “Well, the bride never eats at her wedding, anyway. You could just bring snacks for yourself and let us make an unforgettable banquet for your guests.”

Really? Continue reading Receptively GFree (No Cross-Contamination)