Category Archives: Fibromyalgia

Have a Heart, Give a Gift

Heart disease, not cancer, is the #1 killer of women.  I learned that and other invaluable information on Carolyn Thomas’ My Heart Sisters blog.

Over the years I’ve “stolen” and reposted many a wonderful post from Carolyn Thomas.  Her blog, Heart Sisters, has been one of the few I’ve followed for years.  I have forgotten what led me to her blog but once I read both her compelling stories and the up-to-date information on  women’s health, in particular heart disease, I was a Carolyn-groupie.  

Apparently Johns Hopkins was a groupie too when they asked her to write a book on Living with Heart Disease.  My guess is that her down-to-earth writing coupled with up-to-date research and information appealed to Johns Hopkins as much as it did to me.

Here’s just a sample of info found on Carolyn’s blog:

“Did you know: Women generally fare far worse than men after experiencing a cardiac event? One possible reason is that it can be confusing to make sense of warning symptoms when they do hit. Women are also less likely than our male counterparts to seek immediate help at the first sign of cardiac symptoms. Instead, we end up:”

  • toughing them out
  • waiting to see if they go away
  • blaming them on stress, muscle soreness, indigestion or other less serious non-cardiac causes

Read 12 cardiac symptoms women must never ignore

I can’t say enough good things about Carolyn – you’ll have to read her book and her blog to see for yourself what fabulous advocacy and education Carolyn has provided since her own “widow-maker” heart attack. (Full disclosure:  we are not related, I’ve never met her in person, and I don’t get a kick-back!)

Buy a copy and give the gift of life to a woman you love . . . maybe it’s even yourself

Save 20% when you use the code HTWN when you pre-order the book from Johns Hopkins

Order your copy click here:  Johns Hopkins University Press 

Johns Hopkins University Press is the publisher and here’s a fraction of what has been said about Carolyn’s Book:

[A Woman’s Guide to Living with Heart Disease] gives women the knowledge they need to become their own advocates in a health care system that continues to be weighted against them.”

“This book brings a needed focus to a leading killer of women today and is a must-read for women and their loved ones.”

“If you are a woman, or love a woman, this is a book for you! Cardiovascular disease is the leading killer of women. Here is a book focused on women’s cardiovascular health. It is all here—prevention, diagnosis, and treatment. Read it for the people you love.”

“This work is an important contribution to the discussion about heart attack and misdiagnosis in women. Thomas’s personal story—alongside the stories of millions of other women—provides a needed reminder of recognizing one’s symptoms, avoiding denial, and seeking medical attention. This elegant book is a unique addition to women’s health books and a necessary read for women and the people who care about them.”

Thank you Carolyn for pushing through your own symptoms to write a book of this magnitude.  

 

Laughter is the best medicine

The weather is changing

my body rearranging

Help! I’m in a fibro flare

Everything hurts

including my hair.

Sharon Bonin Pratt is a writer, an artist and a dear friend.  I think she also is psychic.  I’ve been not feeling great and the subject of her last post was just what I needed.  AND it’s dedicated to ME!!!!  What an honor!

Shari inspired me to look for a smile (SEE THE VIDEO).  

Here’s a sample from Sharon Bonin Pratt’s Ink Flare:

“Who can laugh without relaxing? Isn’t that why some of us (not me of course, and certainly not you, but other unnamed folks) pee their pants when laughing raucously? Losing all control is not a bad thing, even if you must change your whitie-dities, because when you’re having that much fun – who cares about all the rest? Oh, and it’s contagious! In a good way, not like the flu, but like having enough cup cakes for everyone in the world. So now I not only feel good inside my own world weary bod – I feel good because everyone around me also feels good. Motto for today: Spread cheer – laugh out loud.”

Read her entire post –  Sharon Bonin Pratt’s Ink Flare

Frankly Freddie – I found a cure for my human!!!

My Dear Human Beings and other critters,

My human has been too tired to go on walks.  All she wants to do is sit around and I’m getting bored keeping her distracted by petting me.  She blames Fibromyalgia/chronic fatigue but I’ve long suspected that she just needs a new career that is exciting.  I found the perfect cure – FOR EVERYTHING THAT AILS HER .

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The CURE

There’s a woman in England who  (instead of moping around like my human being)  got a pair of feathered fans to do a routine in a bar that was holding a cabaret night.

She said: “It was nerve-wracking but exciting . . .  I felt alive. . . . Even though she’s not completely cured, her chronic fatigue only flares up every two or three months – lasting at most for a couple of days. “

She’s got big plans for the future . . . She said: “I have signed up with the alternative model agency Ugly, in London and hope to start appearing in magazines and adverts.”  (I didn’t tell my human being about “Ugly” because I’m not sure what kind of magazines and adverts want “ugly” . . . )

Freddie Parker Westerfield, CDT RET
Freddie Parker Westerfield, CDT RET

My human thinks all this is just a ploy to get her to take me on walks.  I told her if she didn’t believe me to read this:  

Woman Bedridden With Depression And Fatigue Turns Her Life Around With Burlesque Dancing

 

 

“I don’t want to talk about it”

I should go out in the garden and eat worms.  I’m exhausted.  I hurt all over.   It’s hard not to have self-pity.   I TRY to limit my public and private kvetching because I know it doesn’t help . . . me or you.  There’s scientific basis for the harm we do to ourselves when we talk about trauma – any kind of trauma. 

Acrylic on Canvas, by moi
Acrylic on Canvas, by moi

 If you or anyone you know has a “story of pain” (physical, psychological, social, economic etc) read Carolyn Thomas’ My Heart Sisters excellent post.  Here’s a teeny taste:

Rehashing a traumatic story/event does some of the following:

  • puts our system on high alert
  • triggers inflammation
  • triggers the fight/flight response
  • triggers shutdown mode

On the flip side Carolyn talks about the benefits of sharing with close friends:

“Dr. Laura Cousin Klein and her team found that the credit for women’s unique stress reactions may belong to the hormone oxytocin (also known as the “lovehormone”).  It’s the body’s own wonder drug – released when we nurse our babies, for example, as well as during a woman’s stress response. It’s instinctual, it buffers the fight-or-flight response and it encourages us to tend children and gather with other women instead – what’s called our tend-and-befriend response to stress.  This calming response does not occur in men, says Dr. Klein, because testosterone—which men produce in high levels when they’re under stress—seems to reduce the effects of oxytocin. Estrogen, she adds, seems to enhance it.”

Read the entire post “I don’t want to talk about it“- a Judy’s-Must-Read-Blog-Post.

The Ultimate DYI – I’ll make me a new pea brain

As my fibromyalgia/chronic fatigue symptoms go unabated I have asked my doctor Patricia Ahearn repeatedly to get her lobotomy certificate.  I’m sure there is week-end or on-line training for doctors.  She’s a very caring person so it’s been hard to understand why she’s been stalling.

Maybe she’s been waiting for this new research?!!!!!!

hmmm . . . speed up the evolutionary process . . . we could still rule the world . . 

Researchers Grow Nearly Complete Human Brain in Ohio Lab

“An almost complete version of a tiny human brain has been grown in a U.S. lab in a move that could bring major strides to the treatment of neurological diseases, a scientist says.
Rene Anand, a professor at Ohio State University, has grown in a dish a brain equal in maturity to that of a five-week-old fetus, his university reported.”

“It not only looks like the developing brain, its diverse cell types express nearly all genes like a brain,” Anand said.”

“Around the size of a pea, the brain in a lab dish includes multiple cell types, all major regions of the brain and a spinal cord, but lacks a vascular system, the university said.” 

“It was grown from human skin cells and is claimed to be the most complete brain of its type grown yet.”

AND!!!!!

With the new 3D printing technology I might be able to make me new brain, each morning, right at home.

It’s SWEEPS “weak”

Haven’t blogged in a while. The last few weeks have been rough – the fibro-fatigue-fiends frolicking fearlessly.  I’m looking for my mop.

mad, sad, fatigue, fear

sweeping away sanity

the broom of my brain

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dust storm of feelings

tiny particles of dirt

blowing through my mind

6827_view

wring out the debris 

clean clear water, bucket brain

gratitude mop up

Haiku Horizons - prompt SECRET
Haiku Horizons – prompt SWEEP

 

My Motto: Don’t call me. I won’t call you.

I never answer my phone.  I call people back when I have energy or e-mail because two-way phone conversations are physically tiring.  Crazy! . . . sounds crazy, even to me.  So I assume it sounds crazy to you.  

Not wanting to be labeled as “nuts” I usually explain  that after 30 years as a psychotherapist, answering my phone knowing that someone is probably calling in crisis, I’ve become phone-phobic.  

You understand phobia’s and their hallmark of being irrational.  You don’t understand neuroimmune-central nervous system-out-of-wack.  Can’t fault you.  I don’t understand it.  Medical science doesn’t understand it.   

Normal stimuli overload my brain circuits and the brains of others who live with Fibromyalgia, Chronic Fatigue, Lyme disease, Multiple Chemical Sensitivity, brain trauma etc.  There are a lot of theories but no one really knows why or what to do about it. 

Acrylic on Canvas, by moi
Acrylic on Canvas, by moi

Even though I’m a social person by nature all socializing tires me. One or two “events” a week is my limit.  Social Events?  You are undoubtedly picturing me out-on-the-town, wearing a Dior gown and sipping wine at the opera ( . . .  those who know me are picturing me wearing a t-shirt, Levi’s, Crocs and sipping coffee at Starbucks).

Activities that once were pleasurable now create fatigue:

  • Going to the movies or lunch with a friend (afterwards I nap for 3 hours)
  • Participating in any group activity (afterwards I go to bed early)
  • Walking Freddie in the park.  (I go the opposite direction when I see others walking their dogs.  Walking is taxing enough without interacting with dogs’ humans.)
  • Shopping in stores crowded with merchandise.  (My brain goes on visual overload)
  • Talking on the phone to someone I love.  (Yup, two-way conversations take focus and thus energy.) 

Since retiring I’ve done phone sessions with clients.  The pleasure of hearing their voices, catching up on their lives and the honor of hopefully helping them get back on track far outweigh any fatigue that comes later.  I’ve long ago figured out that some things are well worth the consequences of a nap or a few days of inactivity. 

Please continue to reach out. I will be honest with you about my options and energy.  I don’t want to live as a social recluse.  So E-mail me when you want to catch up, share, or get together because I won’t answer the phone . . .  

Hammy Hamster sez: "Nuts?, Did I hear NUTS!)
Hammy Hamster sez:
“Nuts?, Did I hear NUTS!)

This article prompted me to write this post: Cort Johnson, Social Exhaustion The comments are perhaps even more telling than the article itself.

Going Viral

Scratch one more cure . . .  for now.
I started an anti-viral medication that has been successful in treating some people with Chronic Fatigue.  There is a long-held theory that virus are responsible for fibromyalgia/CFS and since I have tested positive for a viral-reactivation it seemed worth a prescription.
After taking the meds for over a month and coping with a bit of  24-hour nausea and headaches, last night I was wakened by really severe stomach pain which radiated to my back .  The cure was worse than the malady. 
Before the pain became full-blown I was playing around with some oil paint and roughed-in this face.  Now looking at my preliminary sketch it’s a window into how I’ve been feeling.  I think I’ll not “finish” the painting and leave it be  . . .  for now.
Oil
Oil

I stopped the medication this morning.  Like my painting, I’m not going to try to “finish off” the virus either  . . .   for now.

Year of the Spark, Carla Sonheim & Lynn Whipple
Year of the Spark, Carla Sonheim & Lynn Whipple

Fibromyalgia DX: Hysterical Middle Aged Woman’s Syndrome

1996: The end of life as I knew it:. I began experiencing excruciating burning pain in my hands, arms and legs. In 1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: unexplainable, unverifiable and in all probability psychosomatic. Their unofficial diagnosis was Hysterical Middle Aged Woman’s Syndrome.

Doctor after doctor, told me, test after test after expensive test came back negative, that nothing was wrong with me and to go home and “Get a life”. Some looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychology” – Wink, Wink. The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.

I just wanted someone to put a name to what I had. Gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors, Yup you are reading right! They are ALL in the plural. I didn’t just see one of each. I saw private practitioners, researchers, and heads of hospital departments. I’m sure each of them wrote “HYPOCHONDRIAC” on their charts.

Over a decade later I’m no longer middle-aged or hysterical. Due to medication, I’m doing better. Yet these past two mornings I woke up feeling like a locomotive hit me and the bottoms of my feet on fire even tho the only thing they touched for 7 hours was a sheet. This morning I’m tired. Tired of being tired, However, Max took me for a walk and reminded me that whatever my diagnosis, however I’m feeling – it’s NOT all about me!

This was originally posted on August 12, 2009.  Nothing has changed except for the fact fibromyalgia and chronic fatigue/ME are now recognized as “officially” an illness.  The research has been slow but point to the possibility fiber is a neuro-inflammatory disorder in the brain.  

Those doctors were right after all — it IS all in my head!