I am 57, and I am Tired, Too

The other day, I got one of those essays that get circulated by e-mail — the kind that are intended to provide a focus for blue collar angst while kicking up commitment to a very conservative political agenda.

This one was titled, “I’m 63 and I’m Tired,” and was credited to Robert A Hall, “a Marine Vietnam veteran who served five terms in the Massachusetts State Senate.” He also published a book in 2005, The Good Bits. The essay is apparently taken from his blog. At the bottom of the e-mail, it states: “There is no way this will be widely publicized, unless each of us sends it on! This is your chance to make a difference.”

Let’s think about this for a minute. This man has managed to be elected to public office five times, has published a book, and is a frequently quoted blogger, but the only way he has of influencing the world is via an e-mail chain-letter?

Well, I’ve never been elected anything (except, perhaps ironically, “Most Likely to Succeed”), I’ve published one novel that got great reviews (all two of them), and I write a blog that pretty much nobody reads. I think my deathless prose is more in need of an e-mail campaign than is Mr. Hall’s.

And so, with all modesty, here is my response to his essay. Everyone and anyone is welcome to copy it and send it to everyone they know. Or post it on Facebook. Or divide it into skeenteen-bazillion little 140-character excerpts and use it to torture people via Twitter.

“I’m 57, and I’m Tired, Too”

By Candace Van Auken

I’m 57. Until I became disabled in 2001, I worked hard at different jobs, routinely putting in 50 to 70-hour weeks. I did call in sick some days as my inflammatory arthritis worsened, but my employers just patched me through to meetings via telephone — there being no rest for the weary white-collar employee. For years, I made a very good salary, and I didn’t inherit my job or my income. In fact I had to work twice as hard to make 3/4 the salary of the average male employee. Now, given the economy and my disability, I’m probably going to end up living under a bridge, and that thought makes me feel both scared and tired. Very tired.

I’m tired of being told that I’m a parasite when I spent many years paying taxes and Social Security. (I noticed, one year, that according to a newspaper article, I was paying three times the amount in taxes as a politician who earned twice what I did. Unlike him, I paid my fair share.) I was told by the government that I had worked for my Disability insurance, but according to people lucky enough to have never been seriously ill, I’m a drain on society. I’m tired of being told that conservative congressmen will take the money I paid in, and give it to the most obscenely profitable industry in the world — the oil companies — as “subsidies” necessary for “the creation of new jobs.” (It’s a fact: As oil companies profits have risen, the number of people they employ has decreased, a reality that apparently doesn’t trouble conservatives.)

Photograph of member from the Westboro Baptist Church at the United Nations headquarters in New York City, on the day of Pope Benedict's address to the UN General Assembly. Original photograph by David Shankbone. URL: http://blog.shankbone.org/about/

I’m tired of being told that Christianity is a “Religion of Love,” when frequently I can read dozens of stories about members of the Westboro Baptist Church calling Catholic priests “vampires” and the daughters of our current president “satanic spawn…of a murderous bastard.” The Supreme Court just upheld the group’s right to stand outside the funerals of military heroes holding signs that say, “Thank God for Dead Soldiers.” The group launched a Web site called “Priests Rape Boys,” and they don’t just save their venom for Roman Catholics. They have claimed that Orthodox Christians are indistinguishable from Catholics, and they also criticize Methodists, Presbyterians, Lutherans, and other Baptists. After a 2008 earthquake in Sichuan Chine, the group issued a press release thanking God for the number of people who had lost their lives, and in 1996 they protested at the US Holocaust Memorial Museum in D.C. saying, “Whatever righteous cause the Jewish victims of the 1930s–40s Nazi Holocaust had…has been drowned in sodomite semen.” And in case you haven’t figured it out, yet: They are just as “typical” of Christianity as Al-Qaida is of Islam.

I’m tired of being told that out of “Tolerance for Free Speech and Freedom of Religion” we must look the other way when conservative politicians encourage the murder of gay people in Uganda or aggressively proselytizing American Christian missionaries offer to rebuild areas of Sri Lanka devastated by a tsunami only if the homeless and destitute residents abandon their faith and convert to Christianity. (And when Sri Lanka’s government complained, the Bush administration threatened to cut off aid and credit to the country.)

I’m tired of hearing that American workers must lower their standard of living and give up the right to bargain collectively as union members in order to slow the number of jobs being shipped overseas. Ending up with a living standard comparable to Bangladesh has never been part of the “American Dream.”

Prohibition era poster

I’m tired of being told that that we can “Win the War on Drugs,” when it is obvious that the millions we pour into it are working just as well as Prohibition did in abolishing the sale and consumption of alcohol. And I am tired of being treated like a criminal whenever I go to buy OTC Sudafed at my local drug store. Are middle-aged, chronically ill women with stuffy noses the leading edge of a new crime wave?

I, too, am tired of hearing wealthy athletes, entertainers and politicians talking about innocent mistakes, stupid mistakes or youthful mistakes, when we all know they think their only mistake was getting caught. I’m tired of people with a bloated sense of entitlement, rich or poor.

I’m really tired of people who don’t take responsibility for their lives and actions. I’m tired of hearing conservatives blame “big government” or “reverse discrimination,” for all their problems.

Yes, I’m sick and I’m tired. But I’m also glad to be 57. Because, maybe, I’ll live long enough to see people catch onto the many ways that conservative Republicans pretend to serve US citizens while actually doing the bidding of the large international corporations and interests that fund them. I sure hope so.

Candace Van Auken is a middle-aged woman disabled by autoimmune diseases, who was mightily ticked off by Robert A. Hall’s essay — now going the e-mail rounds — “I’m 63 and I’m tired.”

There is no way this will be widely publicized, unless each of us sends it on! This is your chance to make a difference.

Photo credit:

Copyright © 2011 by Candace L. Van Auken. All rights reserved.

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Posted in Internet, Politics

The immunological price of social pain

Stress is one of those fuzzy psychological constructs. It is usually defined as a state of mental or emotional strain, and a chronically ill friend of mine used to call it the “dirty little secret of chronic illness.” Why? Because stress makes every autoimmune disease worse, but patients don’t like to admit that to their physicians since, she would explain, their doctors then blame everything on it.

Stress Reduction Kit photograph by programwitch/K Latham, taken on 10/4/07.

When I was young and broke and doing ill-paid grunt work that came with minimal or no health insurance, I found out that stress was also the disease of the underinsured.

Apparently, being poor is extremely stressful, because every ailment — even, in the case of my partner, jaundice and peritonitis — was the result of “stress.” What was even more surprising was that, as our incomes and health insurance improved, even though we were then working longer hours at more demanding jobs, our physicians felt that our stress decreased, only to be offset by an increase in our ill-health.

I think that’s why I tend to develop a facial tic whenever I hear something blamed on “stress.” Like that study of people with chronic urticaria in which the researchers found that the patients were depressed and assumed that the chronic urticaria was the result of depression, rather than the other way round.

Think about it. By definition, chronic urticaria means having hives pretty much all day, every day, for over six weeks. Can you imagine what it’s like to itch like crazy and want to tear your skin off for over six weeks — and have your doctors fail to help you? Would it really surprise you if you were depressed after a month-and-a-half of this torture?

When I see a study like that one, I feel as though it is simply a monument to the failure of empathy on the part of some clinicians.

While it may annoy me to see researchers blame “stress,” I can never object to rigorously designed research studies, and while reading the January/February issue of Arthritis Today, I read a squib on a very interesting study. Intrigued, I dug it out.

Here’s what Slavich, Way, Eisenberger, and Taylor did: They took 124 “healthy young participants.” So they were not working with people who had chronic illnesses. These were healthy kids. What they had them do was the Trier Social Stress Test, “…which involves preparing and delivering an impromptu speech and performing difficult mental arithmetic in front of a nonresponsive, socially rejecting panel of raters.”

The researchers intentionally put the participants through a socially stressful experience that involved an element of rejection.

Then, they collected “oral fluids” (is that a euphemism for spit?) during the test and determined the levels of “two key markers of inflammatory activity — namely, a soluble receptor for tumor necrosis factor-α (sTNFαRII) and interleukin-6 (IL-6).” The latter half of that sentence may look like gobbledygook to you, but the key point is that they looked for biochemicals that promote inflammation. And guess what? The stressed participants had significantly elevated levels of those substances. The authors note, “These effects did not differ as a function of gender, ethnicity, or body mass index (BMI)….”

Talk to the Hand is a photograph taken by catfordCelt/Martin Allen, on 10/26/08, using a Canon EOS 40D.

Next, they took a subset of the participants and had them play a computer game, “…In which participants were ultimately excluded by two other supposed players, leading to an experience of social rejection.” While they were doing this, the researchers examined how well the increases in inflammatory cytokines correlated with neural activity. They found that areas of the brain that are “involved in processing rejection-related distress” were more active the higher the levels of the inflammatory substances.

So what does this mean? It means that “talk to the hand” has more far-reaching consequences than we would have guessed.

The authors comment:

Although we did not assess health outcomes in the present study, it is possible that individual differences in magnitude of inflammatory responses to social stress may have implications for health. Specifically, they may help to explain the considerable variability that has been observed in susceptibility to disorders with an inflammatory component, including asthma, arthritis, cardiovascular disease, certain types of cancer, and depression. Risk for depression, for example, increases substantially following rejection-related life events, but not all people who experience rejection become depressed. Greater neural responses to rejection may be associated with greater inflammatory activity, which is subsequently reflected in the pathogenesis of inflammatory-related disorders such as depression.

Unlike the authors of the earlier study I mentioned, Slavich, et al., are aware that their study is correlational and that causality cannot be proven.

Still they wonder “why neural sensitivity to social rejection would relate to inflammatory responding,” and they hypothesize that “to the extent that physical threats are more likely to occur in situations that involve social threat or rejection, social rejection may trigger inflammatory activity to manage the possibility of injury.” They also note that inflammation can lead to what they call “sickness behaviors,” which may reduce the potential for further conflict.

Recently, there’s been a lot of discussion about the issue of kids being bullied in school. This research provides a very sound reason why parents, teachers, and administrators should do everything they can to minimize children being ostracized or picked on. Not all children may be genetically inclined to respond to rejection with an increase in inflammation, but for those who are, that bullying could have long-term negative effects on the children’s health.

The study also suggests that the way that doctors may respond to patients can have an influence on how they feel. Something that I have seen over and over again in moderating online groups is the following scenario: A young woman in her 20s or early 30s starts feeling unwell. She aches and activities that used to be fun are now painful. She goes to see her GP, only to be told, after a workup for various rheumatic conditions, that there’s nothing really wrong with her. What I see, again and again, is that the woman responds with anger and confusion. She perceives the doctor’s response as a rejection of her, personally, and an attempt to invalidate her experience. She may give up on exercising and comfort herself with food that helps to pack on the pounds, which only makes the problem worse. Ultimately, she is diagnosed with one or more disabling autoimmune diseases.

I just wonder if this story could turn out differently if the medical community was more supportive and encouraging early on. Having a negative RF test does not mean that one is “fine.” I have never tested positive for RA, and yet my inflammatory arthritis is now disabling.

There’s much more work that needs to be done if we are to really understand the neurocognitive pathways through which experience and immunology interact, but this study provides some food for thought.


Photo credits:

  • Stress Reduction Kit, photo by programwitch/K Latham: “This This photo was taken on October 4, 2007.”
  • Talk to the hand, photo by catfordCelt/martin allen: “This photo was taken on October 26, 2008 using a Canon EOS 40D.”

Copyright © 2011 by Candace L. Van Auken. All rights reserved.

Tagged with: , , , ,
Posted in Autoimmune diseases, Chronic illness, Health care, Research

More fun with fructose

Over on Medscape, an article has just been posted that is relevant to a blog entry of mine from over a year ago (“A Fruitless Call to Arms“).

This recent article by Salwa W. Rizkalla is titled, “Health implications of fructose consumption: A review of recent data,” and it was originally published in the November 2010 issue of the journal Nutrition & Metabolism.

As I’ve previously stated, I regard high fructose corn syrup (HFCS) as a sort of a Franken-food, and I can understand why many view it with more than a little suspicion. But this idea that any and all fructose — whether it comes packaged in its natural fruity container or repackaged with an admixture of water, artificial flavorings and colorings, preservatives, and (as if it needed it!) even more glucose or HFCS — is that which greases the shoot into nutritional hell, is a bit much for me to accept.

So here comes a review article that attempts to evaluate how well the research lines up with the primarily negative media attention that has been focused on fructose. And what does it tell us? Well, it’s a good article, and I hate to boil it down to a single sentence that will give you an excuse not to bother to read it, but I guess it can be summed up in the words of wisdom passed down to me by my Dutch great-grandfather, George White Van Auken, who opined, “Anyone who can get drunk on beer is a damned pig!”

In analogous fashion, anyone who consumes more than 100 grams per day of fructose is likely to gain weight, and that much fructose could have undesirable effects on one’s metabolism. However, anyone who consumes 50 grams or less per day of fructose is not likely to experience a negative effect on their control of lipids or glucose.

How much fruit can you eat and stay at or below 50 grams per day of fructose? Well, the amount of fructose varies between fruits, and it is important to note that fruit doesn’t just contain fructose — it can also contain other forms of sugar. According to USDA National Nutrient Database for Standard Reference, here is the fructose content for various raw fruits (size if not stated is medium):

  • Large apple: 13.16
  • Small apple: 8.79
  • Naval orange: 3.15
  • Tangerine: 2.11
  • Banana: 5.72
  • Peach: 2.29
  • Plum: 2.03
  • Prune: 1.18
  • 1 slice of pineapple: 1.78
  • 1 cup orange juice: 5.55
  • 1 cup tomato juice: 3.74

So, if you ate and drank everything listed above in the course of one day, you would consume 49.5 grams of fructose, which is within the guidelines offered by Rizkalla. Of course, that is assuming that you get your fructose from, well, fruit.

Unfortunately, many of us get our fructose, via HFCS, from soda, processed foods — and even our dill pickle relish! A 12-oz can of soda contains about 33 grams of sugar. If the majority of that is HFCS, then a person who drinks two cans of soda a day is already taking in enough to have a possible effect on their sugar and lipid metabolism. Guzzle down one more, and you’re on your way to weight gain, too.

And what’s even sadder about getting your fructose from HFCS is that you miss out on all the other things that are packed into natural fruits and fruit juices. That naval orange that contains 3.15 grams of fructose? It also contains 3.1 grams of dietary fiber, 1.27 grams of protein, and both minerals (like calcium, magnesium, phosphorus, and potassium) and vitamins (like C, folate, choline, A, carotene, cryptoxanthin, lutein, and E). You won’t get all that out of a tenth of a can of soda!

Reference: Rizkalla SW. Health implications of fructose consumption: A review of recent data. Nutr Metab (Lond) 2010; 7:82.

Photo credits:

  • GMO Frog Fruit (Biofrog – Frankenfood for You), photo by AZRainman/Mark Rain: “This photo was taken on October 28, 2007.”
  • 1506 Orange, photo by sunnyUK/Tomas: “This photo was taken on February 1, 2008 in Brentwood, England, GB, using a Nikon D80.”

Copyright © 2011 by Candace L. Van Auken. All rights reserved.

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Posted in Diabetes, Metabolic syndrome, Nutrition, Public health, Research

An unpleasant Discovery

I’m sorry to have deserted my post for over a month. I haven’t given up on blogging — I’ve just been putting my energies into working on another project.

However, today I had to write a letter, and just for kicks and giggles, I decided to share it here. It was written in response to a form of aggressive marketing practice that seems often to be directed at senior citizens.

How it works is that a company will send the elderly person some item that they never knowingly requested or ordered — such as a book, audio CD, or DVD — and then, weeks later, write to request payment for the item.

Now it is my understanding that, under law, one is not obligated to return or pay for an item that one never asked to be sent, but such marketing schemes play on two factors:

  1. Senior citizens’ strong sense of personal responsibility
  2. The fear or uncertainty that many seniors have vis-à-vis their memory.

In other words, grandma or grandpa isn’t entirely sure that he or she didn’t request the item, and they’re much too honest to keep it and not pay for it. And for many of them, writing a check is much more feasible than repackaging the item and dragging it down to the Post Office.

Most companies that engage in this practice will state, if confronted, that the recipient did request the item. But if pushed, most will admit that the “consent” was written in small print on some kind of sweepstakes the person may or may not have entered.

What fries my grits is that when I cared for my elderly Aunt Joan in her last years and now, living with my elderly Mom, it seems as though they each are the recipients of an extraordinary volume of both “mistaken” credit card charges and unsolicited materials. I have never had these kinds of experiences, but then, I’m still in late middle age. And I think these marketing ploys are aimed at ripping off senior citizens.

I feel strongly enough about such practices that I have written to my elected representatives about them, but nobody seems to be listening.

And that is why, now that this marketing strategy has been employed by what we previously thought was a honorable company, I have decided to share my letter publicly. If elected reps and consumer advocates don’t care about the elderly being ripped off, perhaps public exposure will embarrass the companies who play these games. Or maybe not.

Either way, here’s the letter I wrote (and if anyone would like to borrow some of my verbiage for use in similar letters to any entity employing such practices, please go right ahead):

February 17, 2010

Corey S. Powell, Editor in Chief
Discover Magazine
PO Box 1218
Minneapolis, MN 55440

Dear Mr. Powell and/or Customer Service Representative,

I am writing on behalf of my mother, Jacquelyn Van Auken, in response to a letter she received today, dated January 21, 2010, in regard to a DVD, Einstein’s Big Idea & Exploring Space: The Quest for Life, which you seem to believe you sent her.

My mother has not reviewed the DVD in question because she has not received that, or any other, DVD from Discover.

I do not know whether this item was lost in the mail or if your letter was sent in error, but either way, no DVD has been received by us.

Therefore, she will not be completing your Reply Form. Neither will she subscribe to a series of such DVDs nor will she return a DVD (which she does not have and has never received).

Jacquelyn Van Auken is not interested in receiving this DVD nor in participating in any sort of aggressive marketing scheme in which you send her items that she has not explicitly requested and then attempt to obligate her either to pay for them or go to the trouble of packaging them and mailing them back to you.

Both of us feel that such coercive, presumptive marketing schemes are inappropriate and only serve to lower our opinion of the entire Discovery organization. If you are planning to persist in such marketing efforts, we would suggest that you change your name to something more appropriate, like, say, Publishers’ Clearing House.

Please remove my mother’s name from any marketing operations whatsoever, other than requests that she re-subscribe to the Discovery magazine. Please do not mail or telephone with offers of any kind for any non-magazine-subscription products offered by Discovery or any other related or independent organization. Please remove her name from any lists of subscribers that you may sell to other organizations or entities.

She will not assume any responsibility whatsoever for any unsolicited items or material that may subsequently be sent her after this explicit, written request that she be removed from any current or future marketing campaigns.

Finally, if you cannot honor my mother’s request that you remove her from such marketing lists, she will have to reconsider her decision to continue her subscription to Discovery magazine.

Thank you for your time and attention to this matter.

Sincerely yours,
—Candace Van Auken

Copyright © 2010 by Candace L. Van Auken. All rights reserved.

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Posted in Consumer affairs, Exploitation of the elderly

The dietary cure-all

Yesterday, over on HuffPost, Michael Pollan wrote the following, in an article titled “‘Food Rules’: A Completely Different Way To Fix The Health Care Crisis”: “Make no mistake: our health care crisis is in large part a crisis of the American diet — roughly three quarters of the two-trillion plus we spend on health care in this country goes to treat chronic diseases, most of which can be prevented by a change in lifestyle, especially diet.”

My response: I strongly disagree. It is a very a mistaken idea. Pervasive? Yes. Dangerous? Sometimes. Mistaken? Definitely.

Of course we should all eat wisely, and yes, I follow all of your rules, plus more of my own. But I’m still disabled by chronic illness.

You are promoting a myth that is employed to debase, demean and dismiss the many people who are chronically ill due to reasons beyond their control. It is very common for chronically ill people to have to endure repeated lectures from well-intentioned friends and family to the effect that if only they did or didn’t eat this or that, they’d be magically cured.

The snake oil of today isn’t coral calcium or whatever the latest food or supplement fad may be, it’s the idea that we just need to get back to basics to cure every modern malady. I understand that you make your living pedaling this idea, but it is hurtful to the people who may have been irreparably damaged on a genetic or cellular level — either by random mutations or by early or long-term exposure to toxic aspects of “modern living.”

In other words, you aren’t gonna cure the effects of “Love Canal” with a bowl of Kashi.

I’ve spent over twenty years trying to cure myself with diets, exercise, and meditation. All are wonderful, noble things, but they are not a panacea. We need to face up to the fact that some people are just unlucky, genetically or otherwise, and we should treat them with the compassion and regard that we too often reserve for cancer patients and the victims of natural disasters.

For some of us, our chronic illness is a very personal disaster that cannot be averted by clean living.

Reference: Pollan M. “Food Rules”: A Completely Different Way To Fix The Health Care Crisis. The Huffington Post. January 4, 2010.

Copyright © 2010 by Candace L. Van Auken. All rights reserved.

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Posted in Chronic illness, Nutrition, Public health

Of youth, beauty and old lady farts

“…The momentary playground / Of youth’s fickle beauty,” writes poet Robert Rorabeck.

We tend to equate youth and beauty — and health, the unholy trinity worshipped with fervor in our celebrity-obsessed culture.

Only the celebs don’t want it to be a “momentary playground.” Like recalcitrant children, they don’t want to leave off playing, come in for supper. They trust plastic surgeons to lift and tuck and liposuck. Whatever it takes, over and over.

I don’t think there’s a word to describe the feeling I get when I see some woman who I admired in my childhood — for her talent, her charm, or her good looks — and who now appears with some bizarre alien distortion of her once beautiful face. It breaks my heart to see her eyebrows lost to the top of her head, her cheeks stretched bizarrely taut — looking more like a Nazi lampshade than a human face. It makes me shudder.

Don’t these women understand that age can be beautiful? And even when it’s not, it has its own honest heart. I’d rather feature a face ravaged by age (or disease) than some strange simulacrum of what I once looked like (or wanted to look like or thought I should look like).

Left to their own devices, faces tell the story of our lives. We all fall out of the womb looking fairly sweet and innocent, but life and experience carve themselves into us. Maybe that’s why some are so terrified of looking like themselves?

Many years ago I was poking around in a women’s clothing store when I noticed the head sales woman, standing there, all gussied up, in full makeup. She was staring at nothing, lost in thought, her face in repose. And it seemed to me that there was something I didn’t like about her looks, but I couldn’t quite put my finger on what it was.

Just then a saleswoman came up and asked her a question, and the head sales lady’s face came alive. Immediately, the cryptic lines I’d noticed made sense, as she altered her face into a characteristic supercilious sneer.

So maybe what the youth-obsessed want to escape is not just looking older, but turning into the portrait of Dorian Gray.

However, even as surgeons become more skilled and clever, the general public finds more ways to extrapolate the person’s real age.

For example, liposuction only works on subcutaneous fat. While they can suck fat out of women’s arms and legs and tummy and butt, they can’t do anything about visceral fat — “belly fat” — the kind that’s inside our abdominal cavity, wrapped around our organs.

So we end up with middle-aged actresses with stick-like arms and legs but with a larger central diameter than a younger actress would have.

Or, we watch for the scarf, the universal sign that says, “The surgery worked pretty damned well, except that they couldn’t do anything about my @#$@#$ neck.”

What I really wonder about, though, is a subject not quite fit for family viewing. And that is: But what about the old lady farts? Let’s be frank, as we age, it seems as though the odors we are capable of emitting become more and more rank.

Even if someone has the re-manufactured face and body of an 18-year-old, she’s still going to have the lower intestine of someone her actual age. I get this awful image in my mind of some has-been actress, her arms and legs and butt all scrawny, her age hinted at only by her not-so-hourglass waist, ever-present neck scarf, and the menacing cloud of blue gas that swirls around her….

When I was five or six years old I was fascinated by my maternal grandmother’s hands. She had worked, for a time, as a washerwoman, and she had these huge, knobby knuckles, arthritic from all that scrubbing. The skin on her hands was thin with age, and the blood vessels were huge and ropy underneath. Her hands were mottled with scars and age spots, and I thought them the most beautiful hands in the world.

I remember looking down at my perfect little Pillsbury-dough-girl puffs of hands, at how obvious it was that they had known so much less life. I envied my grandmother her hands. I hoped that someday mine would look like hers.

And it wasn’t until I saw those hands, folded in the casket, that I realized that I had never seen them so strangely, unnaturally still. They had always been busy, arthritic or not, cooking, mending, washing, surrounding me with a million tiny gestures of caring.

I would not have changed a hair, a wrinkle, a crinkle, a jowl of that old woman’s face. I reverenced her age, her hard-won wisdom, her good heart, and I so wish that such things had not fallen out of style.

Copyright © 2009 by Candace L. Van Auken. All rights reserved.

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Posted in Aging

Rethinking exercise

As a kid, I used to watch Jack Lalane doing jumping jacks on his morning exercise show. I would hop right up and join him, wondering why some people thought exercise was hard.

Later on, I picked up a booklet that outlined the calisthenics routine of the Royal Canadian Mounted Police. Who could argue with those healthy-looking policemen in their Smokey-the-Bear hats and bright red coats? So I dutifully followed the program, touching my toes, jumping like Jack and push-push-pushing up.

In High School I could play basketball, hard, for four hours at a time. I was never any good at it, but I was in excellent physical condition. After that, I went to college, and I let my fitness slide. I came from a family of smart people, not jocks, and the idea seemed to be that you played hard in your youth and then got by on the results of that as you aged. Right.

I became interested in exercise in my thirties as my inflammatory arthritis really began to heat up. I recognized a need to keep myself as strong and flexible as I could. I began to learn yoga and how to lift weights. I bought a treadmill and actually walked on it. A few years later I bought a Concept 2 indoor rowing machine and discovered a cardiovascular activity that was easy on my joints while exercising most of the muscles in my body. I got into really good shape.

Then The Flare began, the big one. The one that’s been worse than anything I have ever experienced or could ever have imagined. It began, very mildly in the summer of the year 2000, and it gained speed and intensity for several years. In the fall of 2002, they put me on prednisone, and in the fall of 2003 they started me on Methotrexate injections.

Just as the Methotrexate seemed to be helping, my liver enzymes went up. We stopped the Methotrexate and waited, but the values didn’t come down. This earned me a liver biopsy that showed “mixed cell inflammation” (my favorite kind), lotsa fat, and no scarring. My liver doctor told me that I had NASH (non-alcoholic steato-hepatitis) and said that I needed to lose weight.

Admittedly, I looked like the Great White Whale. Two years of prednisone and difficulty exercising can do that to a girl. But the conundrum was that they did not want me on Methotrexate unless my liver was happy, but my liver would not be happy until I was on Methotrexate long enough to improve enough to begin exercising and losing weight. Erg.

So, with a story like that, how could I possibly set myself up as any kind of expert on exercise? I look nothing like Jack Lalane, even if I tried to wear that stretchy blue jumpsuit. And I have never towed a string of tugboats on my birthday by swimming along with a rope clenched between my teeth. (Yeah, he did that.) Most of the people who lecture you about exercise look like models or actors who work out five hours a day – lean, sculpted, fit, and beautiful – glowing with health. I guess the real question is: who the hell do I think I am?

Well, actually, I am the most qualified exercise guru you will ever meet because I am just as ill as you are, and I know how very hard – or even impossible – it can be to exercise. But a few years ago, when I was talking with my primary care physician, a man who had worked with me for ten years, he said something very interesting. He commented that of his “very sick” patients, I had held out the longest, that is, I had managed to keep working and stay active longer than the others. And he observed, almost as though he were talking to himself, that he rather thought that it was my strange obsession with continuing to exercise, no matter what, that perhaps accounted for the difference.

Ah-ha, like a Lily Tomlin character, I’ve got “effidence.” And while following my advice is guaranteed not to make you look like Jane Fonda (unless, of course, you happen to be Jane Fonda), you might enjoy improvements in your state of mind, mood, self-image, and energy level.

Hopefully, my story-telling has amused you enough to keep you reading until this point, but my guess is that along about the time I wrote “exercise guru,” your mind began to wander, just a bit. In fact, in a few moments it’s altogether possible that you’ll turn the page and move onto an article on something more interesting – like hemorrhoid remedies.

Don’t worry, you’re not offending me. It’s simply a case of “EGO” (which stands for “Eyes Glaze Over”), and it’s how most of us react to people who try to hector us into hurting and humiliating ourselves at the local gym. Only you need to know one thing: That’s not what I’m trying to do.

Like I said, I’m neither Jack Lalane nor Jane Fonda. I’m like you. I have some mornings where it takes me a half-hour just to sit up in bed, by which point I feel like I’m ready for a nice nap. If I sit too long in a chair, sometimes my right hip does something so ugly that it takes several agony-filled minutes for me to manage to put any weight at all on that leg. I’ve got a couple of toes on each foot that come (the morning after taking Methotrexate) and go (a few days later), and more than once I’ve been walking along and wondered how a ball of wet newspaper ended up in my shoe, only to discover that what I was feeling were my own numb toes.

So when you tell me, “I just cannot exercise,” I hear you. When you tell me, “I said it’s impossible for me to do that,” I know just how you feel.

But I would also claim that part of your problem is that, like me, when you think of exercise, you envision Jumping Jacks. Or you think of some article you read in the Reader’s Digest about a man who, having lost all of his limbs in a terrible accident caused by his congenital lisp, still manages to perform on a trapeze using only his mouth and a splendid set of abdominal muscles. And you think: “That is definitely not me.”

Well, of course not. Our situation is different, and our definition of exercise and accomplishment needs to be different, too. It’s not that you cannot exercise – it’s that you cannot do what you think of as exercise. You think that walking to the refrigerator for a beverage is not exercise – exercise is running a 10K race. You think that standing up from a chair is not exercise – exercise is careening down a hillside on skis at 70 mph.

The first thing you need to change is your conception of exercise. If you have a serious chronic illness, especially one involving arthritis, arthralgia or fibromyalgia, then it’s time to create a definition of exercise as something that you can do.

For us, exercise cannot be a joint-pounding frenzy of pointless activity, but that does not mean that we cannot move our bodies. I know that you’re probably feeling skeptical. Well, let me share another story with you.

When I was in college, we had to take a swimming test because the school was located on the shore of a large lake. I hopped into the pool with complete confidence, having taken years of swimming lessons in my childhood, and began paddling up and down the pool with my arms, dragging my arthritic and fairly useless legs behind me. The swimming coach ran alongside me, blowing her whistle frantically. “Hey!” she yelled. “That’s not swimming!” She paused, searching for words, and finally sputtered, “You’re just getting around in the water!”

I sculled for a moment, considering this, and then replied, “Well, where I come from we have a name for ‘getting around in the water’ – we call it swimming!” And off I went, continuing my laps. Over her vigorous protestations, she finally passed me on the swimming test.

My point is that just because you are not able to do something the way other people (or you!) think you should, that does not mean that you cannot do it at all.

As chronically ill people, we need to define exercise as the fine art of getting our blood circulating, of quickening – even if it’s just a little – our heartbeat, of strengthening our muscles and improving our sense of balance.

Think of exercise as a chance to commune with your body and the world around you. It can be a way to encourage the release of those nifty little beta endorphins that would make you feel better. It can be an opportunity to reduce perceived pain by lubricating your joints and soothing your muscles.

If your attempts at exercise are not doing those things, then you’re not exercising in a way that is meaningful for someone who has a disabling chronic illness.

The very first thing you need to exercise, is your imagination. You need to redefine physical activity in a way that it’s something you can do.

If all you can do is get up and walk once around your living room. Do that. Set your watch or a clock to beep on the hour, and when you hear it, get up and hobble around your living room, once. Then sit down. Over time perhaps you can increase the frequency or the number of times you walk around the room.

Start small, be kind to yourself, and give yourself an “atta girl” for whatever it is that you are able to do.

I have a name for my own exercise program. It’s called, “Starting Over,” because it seems as though that’s what I’m always having to do. I’ll be exercising, a bit more, little by little, until something happens that sets me back on my heels. I get a virus or I have a flare or whatever. That’s the point when many people give up. But not me. I see my program as starting over, again and again. Because it’s not how much I do that counts — it’s how often I make the effort.

Am I tempted to give up? Often. Do I throw in the towel? Oh, yes. But then, after a few days or weeks, I go back at it.

I know that I cannot make myself well. No matter how well I eat or diet or exercise, I am not driving the bus that is this illness. I’m sick, and that’s how it is. But I want to be as alive and viable as I can be, for as long as I can be. And that’s why I do it.

And that’s why you should, too.

Copyright © 2004, 2009 by Candace L. Van Auken. All rights reserved.

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Posted in Autoimmune diseases, Chronic illness, Women's health
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