Thursday, May 31, 2012

A man's search for affection, and health.... 

This appeared in last month's CFIDS Association of America's newsletter (I am almost caught up on this one!). The book appears intriguing:

"Love and Fatigue in America" Reviewed by Jean Zimmer

I have a lot of admiration for anyone with a disorder that affects brain function who can write an entire book. There is a reason the entries in this blog have gotten more and more brief over the years: it has become increasingly difficult for me to express what I want to say for a duration longer than a few sentences. The reviews I write for But You Don't Look Sick are only once a month, and that's about the biggest written commitment I can stick to. And the articles can take me anywhere from 24 hours to ten days to compose. The exhaustion factor also comes into play, as does the fact that using the computer more than two hours total in a day greatly exacerbates other symptoms such as headaches, eye discomfort, nausea, muscle pain, neuropathy and swelling of the feet.

Wednesday, May 30, 2012

GERD and gluten.... 

 Article courtesy of the December 19th edition of the Celiac.com newsletter. Hadn't heard of this particular link before:

A Gluten-Free Diet May Alleviate Gastroesophageal Reflux Symptoms in People with Celiac Disease

In addition to the celiac disease, I have gastroparesis and Sjogren's, both of which aggravate reflux problems. The worst offenders for me have been coffee and orange juice, so I gave them up. Other foods I can handle as long as I keep the portions small and eat them early in the day, such as flax seeds, nuts, olive oil, fish.

This is your brain on fibromyalgia.... 

Came across this article on the Fibromyalgia Awareness! page on Facebook. Be sure to scroll down and check out the photo of an fMRI scan of a person with fibromyalgia:

Help at hand

There are times when being colorful is not a good thing, heh heh. If and/or when the fMRI becomes a diagnostic tool, treatment could start earlier and be more effective. Addressing chronic pain while it's still relatively new produces far better results than waiting until years have passed.

Never thought I'd find myself having anything in common with Hitler! Hilarious! 

The jigsaw puzzle that is fibromyalgia research..... 

Got this from a fibromyalgia Facebook page. It is lengthy, but it is an excellent article worth reading:

Neurobiology Underlying Fibromyalgia Symptoms

I am extremely impressed at the number of cited references. Someone spent a great deal of effort assembling all these sources and summarizing what they mean. It is this kind of dedication that will put us on the path to discovering proper disease treatment and perhaps someday even prevention.

Rave of the Day for May 30, 2012: 

I don't usually post links in my Raves, but it's about pups and kitties! What could be cuter?

For the Love of Cats and Dogs: Pictures and Quotes About Our Furry Friends

On the subject of dog quotes, I have a bunch that I haven't yet posted as Inspirations. Yet another item on my long list of unfinished projects. First I'm going to try to get caught up on my e-mail newsletter articles, then make some wayyyyyy overdue replies to personal e-mails, and THEN maybe I'll get back to the quotes. It would help if I could tolerate being on the computer longer, but I'll take what I can get.

Each year brings new enlightenment.... 

The latest from Toni Bernhard's column in Psychology Today. As usual, good advice here:

11 Tips from 11 Years Sick

I've been sick 15 years now, so I should be able to come up with a few more. Actually, one I would add is to not waste a lot of effort on your appearance if it takes away from your ability to do things you enjoy. What's the point of spending two hours making yourself look perfect if you end up so exhausted that you can't leave the house? I have simplified my life by cutting off most of my hair so I don't have to style or even comb it. I rarely wear makeup unless I'm going somewhere really special like to a wedding. And even though it bummed me out to do it, I gave up all but the most comfortable shoes. I have too many problems with dizziness to risk breaking an ankle on high heels.

Tuesday, May 29, 2012

Nellie revisited.... 

NOTE: I wrote this review for "But You Don't Look Sick". Unfortunately, due to my extremely outdated computer, this blog's server will no longer let me download images, so I cannot share the hilarious photo of Alison Arngrim and me. You'll just have to trust me that it was great.

ANOTHER NOTE: Ms. Arngrim is performing her one-woman show this summer. I hope to attend one in St. Paul but will have to see if the logistics can be worked out. If you're interested in her schedule and other goings-on, check here: Alison Arngrim Official Home Page Confessions of a Prairie Bitch. Okay, onto the review:

Book Review: "Confessions of a Prairie Bitch: How I Survived Nellie Oleson and Learned to Love Being Hated" by Alison Arngrim

"The real things haven't changed. It is still best to be honest and truthful; to make the most of what we have; to be happy with simple pleasures; and to have courage when things go wrong." - Laura Ingalls Wilder

It started with a series about growing up in the middle of America in the late 1800's. The "Little House" books captured the imagination of children for decades after they were published in the 1930's; I remember some of the material being read aloud to me in elementary school. It was the basis for a television show which aired from 1974 to 1983. "Little House on the Prairie" featured Laura, her family, and the residents of Walnut Grove, Minnesota and their joys and hardships. Beloved as quality family programming, the show's popularity continues thanks to syndication; it currently airs on the Hallmark channel. Although the show centers on Laura Ingalls Wilder, she had a most memorable nemesis: Nellie Oleson, portrayed skillfully by Alison Arngrim.

I fortunate enough to meet Ms. Arngrim at a local bookstore. She did a short presentation, took questions about "Little House on the Prairie" and signed copies of her book. Quite unlike the snobbish and conniving character she had played, she was warm, enthusiastic and hilarious. She was also a very good sport, even posing with me for a picture in which she wore a blonde wig bearing her trademark ringlets and I wore a prairie bonnet.

Once I began reading the book, I realized that Alison Arngrim is also far more brave and honest than most actors ever dare to be. "Confessions" contains her entire life story, not limited to reminiscences about the "good old days" doing a hit television series. It includes descriptions of love and laughter but also loss and abuse.

Alison was destined to lead an unusual life. Her parents were Canadian actors who later moved to the United States. Her mother was a famous voiceover artist, known for Gumby and Casper the Friendly Ghost among many other characters. Her father was Liberace's manager. Her older brother was a teen idol. The family changed residences in Los Angeles on practically an annual basis, usually renting apartments in buildings where her neighbors were every sort of eccentric one could imagine. Alison went on her first audition when she was six.

Despite some success in a movie in 1972, her career appeared to stall. But then she auditioned for "Little House on the Prairie" in 1974 for, ironically, the part of Laura Ingalls. Even though that role ended up going to Melissa Gilbert, the producers were impressed enough with Alison to bring her back in multiple times. Finally, when she read for Nellie Oleson, the spoiled daughter of Walnut Grove's mercantile owners, she was able to project an air of smugness that delighted the producers, and she was hired on the spot. She never imagined just how infamous Nellie would become over the next seven years.

It may surprise readers to learn that the real Alison Arngrim was actually very shy. She had to be taught to look others confidently in the eye and to stand up for herself. In short, the actress was nearly the opposite of the character she played.

"Little House" had a large cast, and a huge crew, and these people for the most part became Alison's extended family. "Confessions" tells us of the other actors' quirks and endearing qualities, but it also does more, introducing us to those responsible for hair, costuming, makeup, sets and all the little details essential to a production of this scale. It also recounts the difficulty of withstanding the triple digit heat of the Simi Valley set in mid-summer while adorned in the dreaded ringlet wig, full-length attire and layer upon layer of petticoats. This was definitely not the glamorous profession it might appear to be.

Alison became BFFs with her on-screen enemy. When she and Melissa Gilbert weren't pretending to despise one another on camera, they had sleep-overs and hung out. Then it would be back to Nellie behaving abhorrently and getting her comeuppance in some fashion. Alison regales the reader with tales of mud fights, careening down a steep hill in a rickety wheelchair, getting washed down a river and other adventures.

She also became fast friends with Steve Tracy, who played Nellie's husband Percival on "Little House". The two remained close even after they finished the series, until Steve's death in 1986 from AIDS. This led to Alison becoming involved in activism for AIDS awareness at a time when little was known about the disease. She still volunteers for AIDS organizations in Los Angeles and elsewhere.

Ten years ago, Alison was asked to be on the board of the National Association to Protect Children, which addresses child abuse. It was then she went public with the abuse she had survived in her own life. This continues to be a cause close to her heart.

What did she do professionally after "Little House on the Prairie"? She continued to act, but nothing on the scale of the show that made her famous. Alison did, however, become quite adept at stand-up comedy, which she began while she was still in high school. In 2001, in trying to come up with material for her New York comedy debut, she realized that the public was still obsessed with "Little House", so she put together a routine on the subject. Eventually, the routine became a one-woman show called "Confessions of a Prairie Bitch", the basis for this book.

The book version of "Confessions" is blunt, but not in a lurid, self-pitying or vindictive way. Alison's sense of humor and irony, in addition to being one of her coping mechanisms, helps the reader see just how absurd the cult of celebrity is. Alison Arngrim may have been the child we loved to despise, but now she is a woman who is brave and funny.

Title: Confessions of a Prairie Bitch: How I Survived Nellie Oleson and Learned to Love Being Hated
Author: Alison Arngrim
Publisher: HarperCollins Publishers
IBSN: 978-0-06-196214-1

Friday, May 25, 2012

Inspiration for the Day, May 25, 2012: 

"Our legacy is really the lives we touch, the inspiration we give, altering someone's plan - if even for a moment - and getting them to think, rage, cry, laugh, argue . . . Walk around the block, dazed . . . More than anything, we are remembered for our smiles; the ones we share with our closest and dearest, and the ones we bestow on a total stranger, who needed it RIGHT THEN, and God put you there to deliver."

- Carrie Louise Hamilton, daughter of Carol Burnett

Wednesday, May 23, 2012

When the autonomic is no longer automatic.... 

This appeared in the March edition of the CFIDS Association of America newsletter. It explains and provides measurable proof of the changes that can occur in the nervous system:

Dysfunction Junction: The ANS and CFS

Just looking at these charts makes it more clear to me why I get so exhausted. A body that is constantly over- or under-compensating just to stand or digest or even breathe cannot do this without consequences. Too bad there doesn't seem to be any universal "reset" button.

A virtual eye roll.... 

To those of you outraged by PACE trial, here we go again. This appeared in the March edition of the CFIDS Association of America newsletter. Please also read the excellent comments at the bottom of the article:

Recovery By Internet CBT? A Closer Look 

Why aren't we focusing on teaching patients how to COPE with M.E. rather than trying to convince them that they don't have a physical illness? Cognitive behavioral therapy implies that a person can be cured of M.E. if they just believe they are well. If I believe I have feathers, does that mean I am a bird?

A weighty issue.... 

This puzzling article courtesy of the December 5 edition of the Celiac.com newsletter. Be sure to read the whole thing:

No Evidence That Gluten-Free Diet Promotes Weight Loss (with Reply by Dr. Ron Hoggan)

I guess it's just coincidence then that I lost 40 pounds in 11 months when I went gluten free? I was so focused on not contaminating myself with wheat that I didn't pay a whole lot of attention to weight until I had to start buying new clothes. I went from a size 20/22 to a 10. I have gained about 15 pounds back since 2004, but I think that's from typical slowing of metabolism that occurs in middle age. I wouldn't mind losing about 10 of those pounds, but that would require being able to exercise at an aerobic level, and my other health problems prohibit that.

Tuesday, May 22, 2012

M.E. up close.... 

The creator of the Hummingbird's Guide to M.E. now co-authors a blog. Here is her story and that of "Tinkerbell":

The Tinkerbelle + Hummingbird M.E. blog: in depth about us and this blog

One thread which unfortunately is all too common is that of mistreatment by the medical community. It is very difficult to not be defensive and suspicious of all professionals, especially after being forced to endure harmful physical therapy, being labeled as having a personality disorder and/or dismissed altogether. Imagine if we treated people with cancer this way.

Monday, May 21, 2012

Potentially good news for celiacs.... 

Another article from the Celiac.com newsletter for November 21. This could prove to be a major breakthrough:

Alvine Pharmaceuticals ALV003 Shows Promise in Celiac Disease Patients

The part that really caught my attention is that this could become a treatment for those who remain symptomatic despite a gluten-free diet. Some people aren't able to heal the damage to their bodies no matter how careful they are. I look forward to further research.

Why a negative test might not mean you're going to STAY negative.... 

Got this from the November 21st edition of the Celiac.com newsletter. I hope more research is done on this subject:

Gluten Intolerance May Increase with Age

So I guess if you've been checked for celiac disease in the past and were told you didn't have it, if you become more symptomatic, get checked again. Although I don't know how long it would take for a sero-negative person to test positive. Probably safer just to do a trial gluten-free diet if you are symptomatic, no matter what your test results are. If you end up feeling better, you win. If not, no harm done.

Saturday, May 19, 2012

Expletive not deleted! 

Found this amusing link on a Facebook page. Not that it should come as a surprise to anyone:

Reduce Pain By Swearing

This does actually work for me. By momentarily moving my focus away from whatever it is I just injured, I experience a catharsis and can relax slightly. And when you're in constant pain anyway, any little bit of relief is much better than none.

Obesity is NOT always caused by a sedentary lifestyle..... 

Got this interesting link via a South Dakota fibromyalgia Facebook page. Food for thought, so to speak:

Tests that may reveal your true inability to lose weight

I did not know that high c-reactive protein levels are associated with obesity. Mine have been elevated for 15 years. Doctors can't figure out why or how to fix it. Luckily, I have pretty much all the other factors mentioned in this article under control, so even though I am a tad overweight, it's probably not enough to cause too many more problems.

An "inspiration of the day" for every day.... 

Came across this link via the Facebook page for Peace Bloggers. Am going to add it to my Links list:

Mahatma Gandhi Forum

Sorry about my own lack of inspiring quotes lately. Never did finish sorting through my e-mail newsletters, either. Got derailed by something worthwhile, though: a pair of cardinals built a nest in the lilac bush right outside one of my house's bedrooms a few weeks ago. I have been obsessively watching as the eggs hatched, the baby birds were fed and guarded by doting parents, and today, flying lessons for the (sadly) one remaining hatchling. I took a ton of photos too.  I suspect that when I open the blinds tomorrow, the cardinal family will be gone, but I am grateful to have been a witness to such a saga.

Friday, May 18, 2012

A story of love, and grief.... 

Tuesday, May 15, 2012

This is amazing! 

Saturday, May 12, 2012

Why can't they even narrow it down? 

The latest from Toni Bernhard's column. Got it from the Facebook page for "I'm not CRAZY...I have Fibromyalgia!"

Why Can't Medical Science Figure Out Chronic Fatigue Syndrome?

Incidentally, I am one of those whose attacks of fatigue cause such drowsiness that I was once thought to have narcolepsy. I had a 24 hour sleep study done where you do a regular night's sleep, then in the afternoon begin a series of 10 minute naps. I think there were six of them; if you fall completely asleep during each nap, you are said to have narcolepsy. I did fall asleep during them, but it was only a light dozing off, so not true narcolepsy. But after six naps in 24 hours, I felt more rested than I had in years!

What it is like to be young and have fibromyalgia.... 

This will break your heart.... 

New video, nicely done.... 

The origin of Awareness Day.... 

 Got this link on the Fighting Fibromyalgia 2gether page on Facebook. Thought it might be nice to share how this whole thing got started:

Awareness Day 2012: 20th Anniversary & a Proud History

Mr. Hennessy is one of my Facebook friends. Don't know how he found me, but I'm glad he did.

A re-post, but worth watching again.... 

It's that time of year again.... 

This is original artwork I created several years ago for Fibrohugs and my own fibromyalgia website. But I have seen it on Facebook profile pics, petitions and other places on the internet from people I don't even know. Just wanted to set the record straight that it started with me.

The stigma of sloth.... 

Excellent article courtesy of the January 11th edition of the CFIDS Association of America newsletter. You can feel the author's empathy:

ME/CFS: Into 2012 without Cure or Care

It is a monumental challenge to not feel hopeless when no one around you, including medical professionals, believes you are ill. It is a challenge nearly as great as surviving the illness itself.

An author as inspiring as the books she writes.... 

The January 11th edition of the CFIDS Association of America newsletter included this article about the woman who wrote "Unbroken". Most of her readers probably don't even know she has CFIDS:

Laura Hillenbrand's Acclaimed Bestsellers Haven't Changed Her

I own and treasure my copy of "Seabiscuit", which is so well-researched and vivid that you feel like you are witnessing the events in person. I found out about her illness maybe a year after I had read it. I cannot fathom possessing the amount of drive it takes to do these books while coping with illness as severe as hers. I experienced such a cognitive decline after I got sick that nearly everything I do must be constrained to short paragraphs or articles that take days, not years, to produce because any more than that and I become too overloaded to function.

Friday, May 11, 2012

Tunnel vision in research trials.... 

Found this in the January newsletter for the CFIDS Association of America. Glad someone besides patients are paying attention to the full story in these trials:

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The problem with these trials is that physicians just see the data in favor of the therapies and wrongly conclude that they are going to work for every patient, or even that they constitute a cure. Exercise should only be done TO TOLERANCE, and for the severely ill, that tolerance might be limited to stretching in bed, or maybe just the exertion of eating solid food. I have been exercising pretty consistently up to six days a week for the past four years, starting with only five minutes on the Gazelle glider on Tuesdays, Thursdays and Saturdays and then mostly stretching in the pool on Mondays, Wednesdays and Fridays. I am up to 28 minutes on the Gazelle, but I still absolutely cannot tolerate raising my heart rate above 90 beats per minute. And I still cannot do impact exercise, or even walk more than two city blocks without rest.

My problem with cognitive behavioral therapy is the notion that ME is a somatoform disorder that can be cured by a shrink. I have found voluntary talk therapy to be useful in coping with chronic illness, but ONLY after it was established that I have a genuine physical illness and that any accompanying depression is situational, not the CAUSE of my physical illness. I have not needed to see a mental health professional since 2006 and do not anticipate needing one in the future unless something truly traumatic comes up like an unexpected death in the family, something for which just about any mentally healthy person would need temporary counseling.

Good catch! 

This item came from the November 14 edition of the Celiac.com newsletter. I think this shows progress in recognizing the importance of taking celiac disease seriously:

Publix Pulls Magazine Over Gluten-free Mix-up

Wish all publications were this conscientious. My local newspaper printed several recipes it touted as gluten free but were not. I contacted the author, and she apologized to me, but the newspaper never printed a correction.

Wednesday, May 09, 2012

Singing her way to fibromyalgia awareness.... 

Monday, May 07, 2012

The face of celiac disease.... 

Found this item in the October 31 Celiac.com newsletter. I think it does help put a human face on an ailment people may have heard of but don't know much about:

Mrs. United States 2011: Shannon Ford Hopes to Raise Celiac Disease Awareness

One thing I find interesting is that she probably has to attend a multitude of banquets and other events that have pre-determined menus, and usually there is no room for special meals at these things. So she would be raising awareness if those in charge of food accommodate her needs. It's always a little awkward to attend a dinner and watch everyone else eat what is served while you nibble on a protein bar you had stashed in your purse.

Sunday, May 06, 2012

A petition you can eat! 

This article and video came from the October 31st edition of the Celiac.com newsletter. Watch the video to see the assemblage of this remarkable cake!

Petitions and World's Largest Gluten-free Wedding Cake Move FDA Toward Gluten-free Labeling Standards

So far, eating gluten free is a tricky business. Even if a label doesn't contain a wheat warning, there still could be hidden rye, barley or contaminated oats because there are no requirements to warn against those. Also, unless a product comes from a dedicated gluten free facility, there is a chance of cross-contamination from products that do contain gluten. It would be enormously helpful, not to mention safer, if there were set standards in force.

This is so sad! 

Saw this posted on the Facebook page of People For the American Way. Such a situation shouldn't surprise me, but it broke my heart anyway:

Defense of Marriage Act Forces Gay Couple to Live an Ocean Apart

I wonder, when politicians put laws together, how thoroughly they consider the repercussions? I would find it horrific if my spouse and I couldn't live on the same continent in order to be legally married. I lived 600 miles away from Dan for six months, and that was bad enough.

Saturday, May 05, 2012

Misery gets more company? 

I've heard that the percentage of people with celiac disease has been increasing, and here's some verification. Courtesy of the Celiac.com newsletter for October 17th:

Celiac Disease Prevalence Is on the Rise

Not that the increase is a pleasant thing, but perhaps it will inspire more widespread screening, and sooner after symptoms develop. I certainly think I would have fared better if I had figured out I had it prior to age 39.

One possible explanation for the Sjogren's-celiac connection.... 

Found this extremely interesting item in the October 17 edition of the Celiac.com newsletter. This study might change the direction of future research:

Normal Flora Bacteria Able to Cleave Gluten

Maybe it's no coincidence that even though I've had celiac symptoms ever since I can remember, they didn't disrupt my life in a major way until I developed Sjogren's in 1997. Now I am wondering why diabetes is linked with the two diseases.

Thursday, May 03, 2012

Word is out on Sesame Street! 

A celiac/kidney connection? 

I found this surprising article in the Celiac.com newsletter for September 26. I knew that diabetes effects the kidneys (I have a relative with renal failure), but not celiac disease:

Increased Risk of End-stage Renal Disease in People with Celiac Disease

Now that a link has been established, I wonder if anything is to be done for it other than the standard gluten-free diet? In a way, I am "lucky" that I have another autoimmune disease that requires regular monitoring of my kidneys, so if anything goes askew, it will be caught early. So far my kidneys are fine and dandy.

If only I could afford to stay at these places.... 

Informative article courtesy of the September 26th edition of the Celiac.com newsletter. This is good news for travelers:

More Hotel Restaurants Go Gluten-free

When I travel, I usually end up staying at one of those no-frills extended stay places where each room has a small kitchen. But they are not available everywhere, so if I have to go to a regular hotel, I try to at least get a room with a mini-fridge and a microwave. It would be really awesome to be able to have a nice gluten-free dinner at a hotel where I am staying as I am usually far too exhausted after I check in to wander around looking for safe restaurants.

Never knew student loans could be so groovy, heh heh.... 

Darn that histamine reaction! 

Am most grateful for this article, which someone posted on a fibromyalgia Facebook page. It explains a lot:

Research Studies on Fibromyalgia Skin Sensitivities

Between the fibromyalgia and the Sjogren's, I have a LOT of problems with my skin. I get attacks of body-wide itching that are absolutely infuriating. I get a histamine reaction whenever a trigger point is activated, causing severe itching on the skin right over where the knot is located. And I have chronic rashes which nothing seems to be helping, not even my prescription cream. I have a rash right now on the left side of my neck.

Tuesday, May 01, 2012

Introducing Bob.... 

Was perusing the December edition of the Hummingbird's Guide to ME newsletter when I came across this link to a blog about dysautonomia. The woman who writes it is hilarious even though her medical condition is not. Because dysautonomia is a difficult word to pronounce or remember, she re-named it Bob. I'm gonna add the blog to my Links list, but first, a description of Bob (warning: there's some profanity on these page):

Dysautonomia. Invisible Illness My Arse!

Second, a summary of what it is like to have this ailment:

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness—composed over several long months.

Feel free to poke around some of the other links on this blog, particularly Fabulous Friday. Her post about Boobquake had me laughing so hard that I was snorting like a pig. And wishing that I had been clever enough to come up with a catchy name for all my ailments.

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