Hospital Thoughts

A Greco-Buddhist statue, one of the first repr...
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It’s been a nerve-wracking few days.

The sweetie needed some tests, and one of them involved a CAT scan with a dye injection. (Looks like he’s OK, thank heaven — only a kidney stone. I shouldn’t say only, as everyone who’s had one or knows someone who has says it is excruciating.)

I’m the one who’s usually lying on the gurney/MRI platform/X-ray table. We’ve been back and forth to our small local community hospital so many times in the past decade — thankfully, for nothing serious — we’re on a first-name basis with the doctor who works the overnight shift at the ER. On one of our last visits, he asked: “So, whose turn is it now?”

It was my turn, then, with a fever of almost 104 and a spot on my lung so dark and ominous he drew the curtain and said it might be lung cancer. The sweetie, a photographer by trade, asked to see the films, as he can read negatives with the skill of a radiologist, even if he doesn’t know what he’s looking at.

It turned out to be only pneumonia, but it still meant three days on an IV, sharing a room with a 95-year-old who startled awake at midnight, sat on the edge of my bed and tried to pull out her tubes. I coughed, as one does with that disease, so hard my body ached from exhaustion; I wrote an essay about it for The New York Times.

This time it was my turn to watch the phlebotomist wheel in her cart and overhear her explaining to him how his body would react to the contrast dye. I kept him company as long as I could. In our 11 years together, I’d never seen him lying flat inside a diagnostic machine, grateful for this and shocked at the sight.

I sat and waited, staring at the lavender wall trim and burgundy cupboards and a cheerful British print on the opposite wall, aware for the first time how soothing it all was and how much I needed it to be so.

My last ER visit was January 2009, the beginning of a five-month odyssey to figure out my painful/arthritic/inflamed left hip — I was in so much pain I could barely walk and I do remember admiring the handsome design of our shiny new ER.

When I’m scared, and I admit to not loving going anywhere near that hospital by now (three orthopedic surgeries since 2000, a hip replacement my next, and more than five times to the ER, for everything from a broken finger to a mild concussion the sweetie incurred in a biking mishap) I do not want to be soothed or distracted by television. Old copies of People don’t do it for me either.

The sweetie, a devout Buddhist, did a lot of deep breathing to stay calm.

I’ve spent a fair bit of time around hospitals, thanks to my mother’s various illnesses, which included a mastectomy and a brain tumor (both of which, 10 years apart) she survived. I’ve seen her in hospitals from London to Sechelt, BC, and have learned to make medical staff crazy when necessary with my direct questions and insistence on information.

We’re glad we have a good hospital nearby, deeply grateful for good health insurance and generally good health, and knowing we can get there within a 10-minute drive.

Wish we didn’t know it quite so well!

Jane Fonda A 'Wreck' Laughs NYT Magazine — So Are 19 Million of Us Suffering Arthritis

Legendary Hollywood actress Jane Fonda (C) fla...
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File this one under insensitive lazy journalism.

Nineteen million Americans, (including me), suffer from arthritis, including Jane Fonda’s type, osteoarthritis, a degenerative disease that can lead us to the altar of knee and hip replacement decades before we want it in order to walk across a room pain-free. Due to an osteoarthritis flare-up in my left hip, I’ve been unable to exercise since January (and I am far from Fonda’s age of 72), due to the pain, swelling and lack of mobility from this incurable disease.

Making fun of cripples? Nice work if you can get it!

Deborah Solomon, who clearly thought she was being funny in her New York Times Magazine interview this past weekend:

This interview is for our special Wellness issue, by the way.
I like that word, because, look, I’m fit and healthy. Do I hurt all over? You betcha. I have a new hip; I have a new knee. I had the knee done in June, and I had my hip done three years ago.

You sound like a wreck!
I’m 72. And when you have osteoarthritis, that happens.

Do you think exercise damaged your joints?
Oh, no, absolutely not. I have genetic osteoarthritis. My brother has it; my father had it. It’s genetic. The pain doesn’t define me.

What if we all wind up with titanium joints because we exercised too much?
No, some people can run and do impactful things until they are into their 80s, but I have this problem.

From the CDC website, easily found with a quick click of the mouse, where Solomon might have found…hmmm…a few facts and maybe even ginned up a little empathy:

Arthritis is the most common cause of disability in the United States, limiting the activities of nearly 19 million adults. The CDC Arthritis Program is working to improve the quality of life for people affected by arthritis and other rheumatic conditions by working with states and other partners to increase awareness about appropriate arthritis self management activities and expanding the reach of programs proven to improve the quality of life for people with arthritis.

Sick At Home Alone? How Social Media Are Helping

Day 6/365
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I found this New York Times story compelling — selfishly — as someone recently largely confined to quarters recovering from a bad bout of osteoarthritis and a back spasm. Two friends, both self-employed writers, one living in a fourth-floor walk-up, are also at home with their own back issues. Comparing notes, checking in with one another and commiserating has made it more bearable.

Thank heaven for email and Facebook!

A diagnosis of a chronic or terminal illness is bad enough — but the added, enforced social, physical and emotional isolation that often comes with it can make things a lot worse.

If you are, as many are, much younger than those typically facing a specific illness or condition, friends in your peer group may have no idea what you face, and may find it depressing or frightening to discuss.

If no one in your family has it — my Dad, 80, and I are comparing athritis meds these days! — who really understands your daily struggles?

You need people who get it and can help:

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

“It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation.

“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report.

They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Have social media helped you cope with an illness or injury?

29 Days Of Giving Can Change Your Life, Says Author With MS

A Clock - and a Remembrance of Love
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Altruism can, quite literally, make you feel better, reports The New York Times. A new book, “29 Gifts: How A Month of Giving Can Change Your Life” chronicles the decision by 36-year-old Cami Walker, an L.A. woman diagnosed with multiple sclerosis, to focus her energy every day on others. The result? Reduced pain and a slowing in the progression of her disease.

Ms. Walker gave a gift a day for 29 days — things like making supportive phone calls or saving a piece of chocolate cake for her husband. The giving didn’t cure her multiple sclerosis, of course. But it seems to have had a startling effect on her ability to cope with it. She is more mobile and less dependent on pain medication. The flare-ups that routinely sent her to the emergency room have stopped, and scans show that her disease has stopped progressing.

“My first reaction was that I thought it was an insane idea,” Ms. Walker said. “But it has given me a more positive outlook on life. It’s about stepping outside of your own story long enough to make a connection with someone else.”

And science appears to back her up. “There’s no question that it gives life a greater meaning when we make this kind of shift in the direction of others and get away from our own self-preoccupation and problems,” said Stephen G. Post, director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University on Long Island and a co-author of “Why Good Things Happen to Good People” (Broadway, 2007). “But it also seems to be the case that there is an underlying biology involved in all this.”

An array of studies have documented this effect. In one, a 2002 Boston College study, researchers found that patients with chronic pain fared better when they counseled other pain patients, experiencing less depression, intense pain and disability.

Do you make it a point to give to others every day? Is it a gift of your time, money, attention? How, if at all, has it changed your life?

Women With Brain Tumors Seven Times More Likely Than Men To Be Abandoned

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Here’s a sobering sad story about how women take care of their men when they become seriously ill — but, apparently, not vice versa.

Dr. Marc Chamberlain, a Seattle oncologist, noticed this pattern with his patients and a national study of 515 patients who received disgnoses of brain tumors or multiple sclerosis from 2001 through 2006 confirmed it. Women were seven times as likely to become separated or divorced as men with similar health problems, according the report, published in the journal Cancer.

As some of you know from firsthand experience, serious illness is terrifying and, like many such situations, quickly lays bare the character of those around you as they respond to the situation — or flee. My mother, who is now fine, was found in August 2002 to have a large meningioma, a brain tumor. She was discovered, unable to leave her bed for days because it had so affected her body, by the RCMP who broke into her home into her small British Columbia town. I found out because I called her exactly at the moment they were there, and a strange man answered her phone — one of the officers.

My partner, who then had a key position at a major newspaper, unhesitatingly told his bosses I needed him and left with me the next day to fly across the country. It cost a fortune to fly last-minute, which he paid. I didn’t have the money. It took several days before she could even get a clear diagnosis after extensive tests and, in the meantime we had to suddenly take charge of her home and her dog, this in another country over a holiday weekend. She’d never met my sweetie before – now, there she was lying in a hospital bed. He looked handsome, confident, happy to be there, no matter what her condition or how distraught I was over it. “Holy cow!” my Mom said.

As a child, his own Mom had been sick, sometimes for a month at a time with terrible vertigo, and he saw his Dad caring for her. It was how, thank God, he was raised. This isn’t the stuff of first dates, romance and roses and sweet nothings.

That terrible weekend, he happily helped me in every possible way to deal with this nightmare; I returned to Vancouver later, alone, for her six hours of surgery.  He took my mom’s soiled matttress outside and scrubbed it with hot soapy water. That’s when I decided I’d marry him. Is there anything more powerful than love in action?

The men who leave these women, in their moments of greatest fear, grief and need, should be utterly ashamed of themselves.

The Christian marriage vows, at least, specify, in that order: “In sickness and in health.”