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
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
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.
Continue reading Gut Instinct: In Search of an Answer
Apologies for the dearth of posts the last two months. I wasn’t sick or in jail, thank goodness. I was super busy planning a wedding. My wedding. Yes, I planned and pulled off an entire wedding—from appetizers, bridesmaids, and cake to tuxedos, underthings, a veil and white gown…and everything in between—for 100 guests in four months.
It wasn’t that hard. I mean, what else is there to do while recovering from surgical removal of one’s womanly innards and resulting complications thereof?
Sure, I could have wallowed in self-pity: woe is me (or, more correctly, I) for being in pain for five months and counting (I have gotten a bit peevish about the pain on a few occasions). How awful to be in menopause when I’m not even fifty (I got over this pretty quickly). Rue that I’ll never have children of my own (this does prickle me with sorrow from time to time and then I think of all the kids I’ve helped as a teacher or adviser in the past twenty years plus being an aunt is pretty danged awesome). Wallowing is boring and surprisingly exhausting. I prefer to look on the bright side of things.
There were and are a lot of bright sides to the surgery. Number one, I don’t have cancer. We can end the gratitude list right there. What else do I need to feel immensely grateful? The surgery and cancer scare reminded me that life is unpredictable and short. There are no guarantees that I’ll have next year or any years after that, or even next week. Life can change in an instant. The doctor could have found cancer and I could be dying or dead right now.
Given that uncertainty, as well as the good news that, at least for now, I’m not dying, why not go for it and get married to the most wonderful man in the world? And why not do it sooner than later? Continue reading Planning a Gluten Free Wedding on a Budget
Contrast tastes terrible. Flavor it berry, banana, vanilla, even Thanksgiving Dinner, and it tastes like, well, nothing like berry or banana or vanilla or anything remotely like food. It tastes so terrible, it makes one hate berry, banana and vanilla, which is not fair because berry, banana, and vanilla are quite tasty as ice cream or pudding and don’t deserve such bilious wrath. It’s liquid chalk, aptly named contrast because it contrasts starkly with anything you want to put in your mouth and swallow.
Okay, the gallon of saline laxative you have to drink in preparation for a colonoscopy is worse, so I’m grateful that this is only a pint of berry chalk. Continue reading Drink This
The slanting of five o’clock sun through the branches of trees with turning gold and red leaves pings the bowl of my soul with hollow sadness. I love autumn with its crunchy ground and vibrant sound, the textured weaves of color wound in scarves around craning necks and sweaters pulled down from shoulder to waist so as not to waste any warmth on shorter days and indigo nights.
That same kind of light poured down the afternoon I spent stuffing envelopes with invitations to the Lupus Foundation’s annual fundraiser. On such a mundane Sunday the riot of light lightened my step, filled my heart with cautious joy. Here I was, just four months post grad school graduation, volunteering for the good of good people with a very bad disease. Come on sun, rain down your light! Let the crisp air in cloudless sky blow my heart that much wider. That’s what I thought, fairly skipping into the building. Continue reading 22 Years a Survivor
A blogger I follow and admire, A Southern Celiac, recently posted about the need to check your medical chart for stray misdiagnoses and other errors. It sparked my own memories of doctors who misdiagnosed me, suggested or provided improper/crazy treatments, put the wrong information in my chart, or otherwise blundered.
This is not to beat up on doctors. I’ve had the privilege of being treated by some of the best and most competent doctors, doctors who really improved my health and well being. I’ve also seen some really bad doctors.
Dr. P diagnosed me with endometriosis when I was twenty. I was in college and the severe pain and wacky bleeding were wreaking havoc. I missed classes, did poorly on exams because the pain was so bad. His recommendation? He said I should get pregnant. I said that was a ridiculous treatment recommendation for my age and condition. He shot back, “Who do you think you are, Miss Diagnosis?” Continue reading Miss Diagnosis
Dr. W looked oddly casual in his surgical scrubs and snazzy black sneakers, which he confessed would come off–the sneakers, not the scrubs–during surgery. It gave him better balance, he said, while he operated using the daVinci robot. He chatted amiably with us while we waited for the signal that the OR was ready, until the lead surgical nurse came in, scowling. The surgical plan wasn’t in my chart, she said. Dr. W looked, and sure enough, the printed plan wasn’t there.
Yikes. Continue reading The Secret to Successful Surgery
“Your surgery is set for August 20th at 10:30 am. Please arrive two hours early. Nothing to eat or drink after midnight. You’ll need someone to drive you home the next day. Call Monica for a cost estimate.”
I was riding a bike through the woods of coastal Georgia when the call came. We just had stopped to swig some water and to admire the beautifully dissonant scenery. I’d never before seen woods composed of palmettos and pines, Spanish moss and yaupon holly.
It became real as I stood on a rise overlooking the salt marsh: I’m losing several organs.
We’re not talking your run-of-the-mill organs like the spleen or a kidney or a section of the colon. No, I’m losing the ones that make me a woman, the organs that separate the female from the male and even the women from the girls. I’m losing my ovaries, fallopian tubes, uterus, and cervix. Continue reading Losing Pieces of Me
I had such a great time with the mammogram two weeks ago, they invited me back for a second round! Woo hoo! This good news came by phone as I was herding my nephews out the door for their first day of tennis camp. It took me a minute to process what the woman on the phone was saying; I asked her to repeat it.
“The radiologist found a pattern of calcification that is prompting her to order a diagnostic mammogram…”
“Oh, hi, Aunts!” I waved to my older nephew.
“…It’s a new development since your last mammogram so it has to be checked.”
“Where are my sneakers?” my younger nephew wanted to know.
“Over there,” I said to him. To the phone I said, “Oh. Okay. Calcification. Which one?”
“Which one? I need both sneakers to play tennis!” “Both breasts.”
“Oh. Over there.” I said, pointing to the shoes.
“Now most calcifications are benign but some are a sign of cancerous or pre-cancerous activity…”
“Aunts, wanna see my Pokemon cards?”
“…so that’s why you have to come back in soon for the diagnostic mammogram.”
“In a minute,” I said. Continue reading The Mammojammogram: Take Two