A Family Faces Autism

a family faces autism         3.11.12

The early days

TJ and Peter a few months after the diagnosis. TJ's holding cards that helped him communicate because he couldn’t talk yet.

Lauren started to notice things when her son was about 2 years old. She and TJ were regulars at a playgroup of kids born around the same time. This allowed the moms to compare notes as the kids started to sit up, crawl, and walk. “It was so interesting, just to see all the different kinds of development taking place,” says Lauren. “And TJ was right along with them.”

And then his path started to diverge. He would start crying in the middle of playgroup for no reason. Sometimes the cries escalated into screams and Lauren had to scoop him up and get them both home. Then the other kids started forming words, but no words came for TJ “And that’s how I first noticed that he was different and how something might be wrong. That’s how it started for us.”

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Why So Many New Year’s Resolutions Fail

why so many new year’s resolutions fail     12.8.11

So many apples, so little time. Photo by Chris Stepanian

Late December is a popular time to picture your ideal self: The you who consistently eats right, reads more books, and never procrastinates. I know, I fantasize my ideal self around this time every year. And then the inevitable happens–life. Typically, by February I’ve given into the fact that cauliflower takes more work than cupcakes and am back to spending guilty evenings with Glee instead of Gertrude Stein.

The annual rise and fall of my good intentions made me a good person to write a guest blog about failed New Year’s Resolutions for PATH. The name stands for Planned Action Toward Health and the organization has a great track record providing worksite wellness programs. You can read the blog here.

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New Image Courtesy of Contact Dermatitis

My blog explores the connection between health and identity so I was thrilled when I read my friend’s essay about how allergies forced her to give up an identity she had come to love. She is kind enough to let me post it here.

new image courtesy of contact dermatitis 11.14.11

by Maria M., guest blogger

I'd been some shade on the blonde spectrum for more than a dozen years

When my allergy doc asked, “do you color your hair?” I initially felt flattered. The artistry of Scott, my beloved hairstylist of the past 15 years, often solicited such accolades. Instead, the question was one of many that she asked on the penultimate day of my patch test, a four-day diagnostic that aimed to uncover the reason my eyelids had begun swelling, deflating, cracking, and bleeding. The test involved having potentially allergenic substances dotted onto my back, from shoulders to waist, and waiting to see which provoked a reaction similar to that on my eyelids. Once we identified — and I avoided — these substances, said the doc, my eyelids would return to normal.

Certainly, I thought, the chemicals that elicited the shine and sparkle of the many blonde shades woven into my hair couldn’t possibly be the culprit. I’d been some shade on the blonde spectrum for more than a dozen years, and my eyelid problem was only a recent concern. Plus, I wore my hair away from my face and definitely away from my eyes. But the doc told me otherwise. Skin is capable of tolerating the thousands of substances it comes across, but sometimes it decides it’s had enough of one or more of them. She also told me that the thin, delicate skin on my eyelids is vulnerable to the residue of any substance transferred whenever I rubbed my eyes.

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Milestones in Women’s Health

40 years of our bodies ourselves      11.2.11

In 1940, Paul Popenoe, a eugenicist and marriage counselor wrote,  “…feminists may be described as women who have inferiority complexes based on the fact of their sex.” (Modern Marriage: A Handbook for Men, The Macmillan Company)

Thirty-one years later, a group of feminists managed to overcome their inferiority complexes and penned the first issue of Our Bodies, Ourselves. The booklet provided information about women’s health and sexuality and challenged the medical establishment to improve healthcare for women. Forty years and nine editions later, Our Bodies Ourselves (the organization) continues to promote women’s health and rights in the U.S. and beyond. The book has been adapted and translated in more than 25 languages by women around the globe and thousands people read Our Bodies Our Blog.

Women’s health has enjoyed plenty of medical and political breakthroughs, but the path has been far from straightforward. Read on for some of the key milestones in women’s health of the past 40 years. Continue reading

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My Mother, My Nurse, Part 2

my mother, my nurse, part 2      10.31.11

It only made sense that Donna would be the one to stay in Cleveland after Laurie’s back surgery. She had the clinical skills, could speak “Hospital,” and keep a watchful eye on her daughter’s recovery. But when her husband went home, Donna was alone. I ask her if being a nurse made the time in the hospital easier or more difficult, and she says both. Easier, because she knew the course of treatment and what to expect. Difficult, because she didn’t get along with all of Laurie’s clinicians.

IV drip

The next hurdle after surgery: dealing with all the tubes.

In total, Donna and Laurie spent three weeks at the Cleveland Clinic. Both describe the first few days as agony. The surgery left Laurie in pain and hooked up to a superhighway of tubes. Donna ticks them off like a grocery list: a chest tube, a catheter, an NG tube up her nose, and an IV tube in her jugular vein. Every time she saw Donna, Laurie would tell her, “I want this stuff off.”

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My Mother, My Nurse, Part 1

my mother, my nurse, part 1      9.2.11

A few years after Laurie's surgery. From left: Amy, Donna, Eric, Kerry and Laurie

Kids of nurses have it both good and bad. Donna remembers her middle daughter saying, “Try being a nurse’s daughter — it’s really fun. Unless you’re bleeding from every orifice, she doesn’t care.” Laurie did not bleed from every orifice but she definitely got her mother’s attention.

This is the story of my cousin’s curved spine, and the surgery that made her upright. I told it before, from Laurie’s perspective. Now it’s time for her mother’s side of the story.

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Major Surgery at an Early Age

major surgery at an early age      6.21.11

The first sign was pain. And constant reminders to stand up straight, not slouch. At first she thought she was just lazy, otherwise she would have better posture.

Laurie nine years later

Laurie (right) with her partner, Amy, nine years after major back surgery.

By the end of high school, my cousin, Laurie was in pain every single day. From after lunch to the end of the day, her back and head ached. At her mother’s insistence, she went to a doctor. And then another, and another. “We went to 7 or 8 doctors, and they all said I had a curve in my spine.”

Laurie had Kyphosis, a condition that can develop in a number of ways. Sometimes the bones in the spine wedge together and force the back into a curve. This is usually the case in adults who’ve had a serious injury or illness. In adolescents, the spine can grow unevenly, the backs of the vertebrae sometimes grow faster and become taller than the fronts. Sometimes the classic teenage slouch is a case of physiology, not attitude.

Most of the time, the fronts of the vertebrae catch up with the backs and the slouching teen becomes an upstanding adult, but not always. Between the ages 18 and 19, Laurie’s spine continued to fold forward. “The curve progressed by 10 degrees, which may be hard to picture,” she says, “but it was a phenomenal amount.”

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Life Lessons in Talking to Doctors

life lessons in talking to doctors     5.20.11

Hospital gowns make it doubly difficult to balance the power in patient-provider conversations.

One of the hard parts of taking your mother in for surgery is the awkwardness of referring to her in the third person while she’s sitting right next to you.

Before he operated on my mother’s shoulder, the surgeon stopped in talk to us and answer questions. I appreciated the fact that he made communication a part of his routine. He told us what he would be doing, how long it would take, and what to do that night when I brought Mom home. He even drew a picture of the broken bone. The only problem was he talked almost exclusively to me. My mom sat and listened. I figured, well, I am asking the questions, he’s just answering them. But I didn’t like talking about her while she sat three feet away. I went away thinking it was a language problem: if only we had a pronoun that covered “her”, “you”, and “me” in one word. Then he could have talked to both of us at once.

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Time to Ask Questions

time to ask questions 5.11.11

It’s not unusual to get a writing assignment that calls for a list of questions people can ask their doctors. I never realized how useful a list like that could be until my mother needed surgery.

How it happened

My mom fell on an icy ski run (a double black diamond as she recalls) this March. At first it looked like she had a broken right shoulder — that’s what the doctors in the emergency room told her. The following week, a doctor back home told her she’d also fractured her left clavicle. Not only that, the two pieces of her broken shoulder were moving apart instead of together. Welcome to the medical establishment, Barker family.

The surgeon drew this picture of Mom's fractured shoulder right before he reattached the two pieces with screws.

Within days, Mom had surgery on her shoulder. Before the operation, her doctor drew a picture of the break for us and explained how he would use screws to re-attach the two pieces of bone. Then it was time for me to leave and spend the day holding my breath. My sister and I consider ourselves lucky to have an athletic, smart-aleck mother who does what she wants and stays out of danger, most of the time. The contrast between her stubborn independence and the idea of her under anesthesia was hard to take.

But all went well, the surgery went without a hitch, and I got to take her home that evening. We started counting the weeks of her recovery. A week later, her doctor told her she might need another surgery. Now the two pieces of her broken clavicle seemed to be moving apart. Her first surgeon referred her to a second surgeon, explaining that reattaching her clavicle would be more complicated, in part because the fracture is so close to her heart. Time to ask questions.

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A Flower in Winter

a flower in winter 1.11.11

Like many people, I was drawn to the idea that a flower (Echinacea) could protect me from the common cold. Then along came a group of researchers in Wisconsin to trample on my purple coneflower.


Cold-cure or not, Echinacea does add color to the garden

A study described in the Annals of Internal Medicine followed 713 people with at least one of the following symptoms: nasal discharge, nasal obstruction, sneezing, or sore throat. I reach for a cup of hot tea just thinking about them. These germ-infested patients received Echinacea, a placebo, or nothing to treat their colds. Then, for as long as they had the cold, they reported on their symptoms twice a day.

All in all, people taking Echinacea seemed to have slightly less severe symptoms and get better about half a day sooner than those taking nothing or a placebo. Six and a half days of feeling lousy compared to seven days is pretty underwhelming compared to the great pink hope of the flower’s reputation.

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