Category Archives: Fibromyalgia, Chronic Fatigue, MCS

My Sketchy Life – hatch, hatched, hatching

Ai yi yiii – ever look up a word in the on-line “Urban Dictionary”?

I looked up “hatch” and was “blown away” by the uses . . . many of which I can not put in print on a G-rated blog . . . most of which I had never heard of nor heard spoken.

Why look up “hatch”, you wonder (or not)?  In art class the focus was on hatching – an art technique where lines are drawn in various forms & intensities to create shapes & shadow.

These two quick sketches were done prior to Easter.   Eureka! I thought: Hatching and eggs were perfect for an Easter blog post.

Then I got “hatched” – another fibromyalgia flare-up and I missed a week’s worth of art classes.

I’m still not feeling good and not pleased health issues keep hatching . . . but this chick got off her fibro-inflated rear and went to class this week.  

HatchVerb – To lose it; to get wound up over something; to be upset.

I’ve been hatching . . .

P.S.  Thanks Peggy A. for doing all the scheduled posting on CATNIPblog!  

Sneak Peek into my sketchy life – not the best . . . not the worst

Had a hard time concentrating and my arms were hurting when I tried to draw.  I’m blaming it on the rain . . .  a convenient fall-guy (pun intended).  When my drawings don’t turn out as well as I would like I usually blame it on the model.  

You can see some of the structure lines & corrections in these 2 minute sketches.

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The model held onto a rope in the poses.  We were suppose to concentrate on the angles.dscn6842

These below were 20 minute poses but I could only draw for about 10 minutes.

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Usually, I use large drawing paper and stand at an easel.  This session I drew on a smaller sketch pad and sat down.  I figured if the model could sit

so could I . . . 

"Excuses, excuses . . . "
“Excuses, excuses . . . “

 

The Queen and me

I admit I’m obsessive about steering clear of people who are sick.  I’ve been “known” to remove my groceries off the counter and go to another check-out if I see a clerk sniffing or coughing.  With fibromyalgia everything lasts longer and is more severe so I go to great lengths to avoid people who even appear to be sick.

My husband caught a cold 2 weeks ago and I’ve assiduously washed everything down – counters, door knobs, light switches and my husband – with disinfectant. 

Turns out I was disinfecting the wrong person.

I woke up yesterday with a scratchy throat, a headache and feeling even less chipper than I usually feel in the morning.

The Queen gave me a cold

How do I know, how am I told?

This cold is a dignified one

no snorting, sniffling nor dripping a ton 

My makeups impeccable, not a hair undone

Despite a sore throat and my throbbing head

staying all day, aching in bed

I shan’t complain

For how often does one contract

 a ROYAL pain.

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Queen is feeling better, says Princess Anne

“But at 90 . . . she is exercising caution as she recovers from a heavy cold which she’s had for at least 12 days, (12 DAYS!!!! ) and which is bound to have left her feeling pretty miserable. (tell me about it).”

“She hasn’t yet had an opportunity to go outside and explore her 20,000 acre private Norfolk estate. (So true, so true)”

LONG LIVE THE QUEEN . . . and me too!

P.S. Wash your hands after reading this post – I’m contagious . . .

 

Here’s looking achoooooooo!

I admit it.  I’m a bit paranoid about catching a cold or the flu.

When I get sick insult is added to injury as my fibromyalgia symptoms flare for weeks after I’ve recovered from the cold. 

I avoid anyone who sneezes, eyes are watery or is coughing.  I’ve moved my groceries from one counter to another to avoid check-out clerks who looked like they are sick and on occasion come home and taken a shower if I THINK I might have been exposed.  

Now I learn it’s possible I’m avoiding  people who aren’t sick,  just afraid, sad or incredibly empathetic!

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Sneezing is “catching,” like a yawn.

“It is true that emotions can affect your nasal membranes. Fear makes them shrink (which can make you sneeze), and sadness makes them swell (which can also make you sneeze.) Though there is conflicting evidence, yawning has been linkedto empathy, and one study showed that psychopaths — people who lack empathy — may even be immune to contagious yawning.”

“If sneezing fits are like yawning fits, does that mean that if we are tuned into others’ emotions, we might sneeze out of sympathy? Though hard evidence is murky, there is some reason to believe that both yawning and sneezing fits may be powered by the mind.”

The article Here’s Looking achoo – debunking the sneeze covers even more:

  • Sneezing is good for the soul
  • Sneezing is bad for the soul
  • If you say “God Bless You,” God might spare you. Or not.
  • Tweezing your eyebrows can make you sneeze.
  • Sneezing always comes in threes.
  • Bright light can make you sneeze.

Read the entire article click HERE.

 

 

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

Adding insult to injury

I woke this morning feeling like a truck hit me, threw me onto the train tracks where I was run over by a locomotive.

AND lo and behold . . .

. . .  today is National Fibromyalgia Day.  I’m in no mood to celebrate but the Fibro-Fiends that dwell inside me are having a ball!

I’m too tired to write an entirely new post to post on this post so I’ll just post part of a post of a post that I posted sometime ago.  . . . .

Judy's Journal, Mixed Media, Collage
judy’s journal, collage

“I look normalI act normal (relatively normal).  However, I feel exhausted much of the time, my body aches from head to toe and my brain sometimes has trouble remembering or concentrating.  Please don’t tell me to exercise more, eat better, try acupuncture or go to a new doctor.  After 20 years I’ve tried just about everything there is to try that I can afford, swallow or legally do.”

“I don’t even care anymore what you call itFibromyalgia, Chronic Fatigue, malingering . . . it’s just tiring being tired much of the time.  I push through it otherwise I’d have no life.  But the price for pushing can be days of crashing so I pick and choose my commitments.”

There’s a free on-line Fibromyalgia Summit.  If you’re interested in hearing the presentations click here: http://www.healthrising.org/blog/2016/05/11/three-days-may-fibromyalgia-summit-almost/

________________________________

Confidential:  Send me your prayers because tomorrow I’m leaving for an Unitarian Woman’s Retreat where I’m facilitating 2 workshops.  (I am not planning on taking my Fibro-Fiends with me.  Please don’t tell anyone because if the Fiends get wind I want to leave them home they will be angry . . . very angrrrrrrrrry . . .)

O’ Woe is Me and my Rule of Halves (parenthetically speaking)

My dear Curious to the Max followers,

I imagine there are millions of you (I have a big imagination) who wait with bated breath and quickening heart beats for my posts – I shall call you Group Numero UNO.  You are keenly aware (due to your breath and heart rhythm) I’ve been bloggingly absent.  The rest of you (group 2, small “g”) are scratching your heads (or other parts) and wondering what I’m talking about because your lives, breath and hearts have gone on nicely without my posting.

For Numero UNO:  I just have lost my mojo, my energy, my focus – not interested in writing, reading, gardening, e-mailing, blog posts started and abandoned . . .  I’m giving credit to a fibromyalgia flare-up because fibromyalgia should be good for something.

For the second group: I am LOST, DEPLETED, SUFFERING and you probably don’t care . . .

On a serious note (not that I wasn’t serious before) fibromyalgia along with many other chronic conditions has a mind of it’s own and takes over at unexpected and unpropitious times.  After over 20 years of living with this condition I’ve still not got the hang of it.  When I feel decent I go, do, get overly involved and then crash for days, sometimes weeks (or months, but who’s counting).

The BACK half
The BACK half

To better manage what energy I have I’ve decided to do half of the ten things I currently need or want to do:

  1. Complete half the alphabet for the on-line daily blogging alphabet posting challenge. (I’ve half a mind not to even do the challenge this year and repost what I wrote LAST year).
  2. Brush half my teeth each day (I’ll alternate halves – half in the morning and half before bed)
  3. Clean and dust the half of the house I can’t reach.
  4. Stop watching the Super Bowl at half-time.
  5. Eat half the pan of brownies I’m making (half today and half tomorrow).

That’s half of my plans so I’m not going to write the other five.  

My New Motto (you can borrow it):

Live half my life with gusto, let the other half rest.

"This woman is half-baked as ever . . . "
“This woman is half-baked”

 

 

 

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

 

 

Wired and Weird – Two for the price of one

Have you missed me?  Have you EVEN noticed I’ve not been blogging?  Well, I’ve been mishuga, fermisht and verklempt.

In my never-ending quest to feel better . . .  

The short version: Went to an endocrinologist because I thought some of my exhaustion might be due to an adrenal problem.  They took a quart of my hard-earned blood and I peed in an “orange juice container” for 24 hours to be told my adrenals are fine but I have Hashimoto’s disease.

Whaaaaaaaat???  I’ve never been to Japan and don’t even speak Japanese. Seems my immune system is eating my thyroid all up.  Put me on thyroid medication and said I should have about 20% more energy.  With my continual state of exhaustion 20% sounded good.

Three months later . . .  maybe 10% more energy.  So endo doc suggested I take Topomax, a tried and true medication, that will put my brain into deep sleep (my brain stays in REM sleep and I don’t get restorative sleep – that’s the main reason I’m so exhausted all the time).  I researched it and checked it out with my fibro doctor who said it was worth a try.

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NOT ONLY DIDN’T THE MEDICATION PUT ME INTO deep sleep it didn’t even put me into REM sleep!!!!!  I was up for 3 nights and 3 days.  Couldn’t even nap.  My brain thought it was a stimulant.  I couldn’t think straight, walk straight or talk straight.  I’m just barely beginning to feel normally exhausted.  

I told my fibro doc what happened on the medication.  She gave me a new diagnosis: WEIRD.

Bob Blobfish sez: ". . . I p"
Bob Blobfish sez: “. . . She didn’t have to get THAT diagnosis from a doctor, just ask ANYONE who knows her . . .”

“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.

Long Live Sophia, my new role-model

Those of you who are regular readers know I’m a fragile flower.  I blame it on the fibromyalgia (at least fibro is good for something).  My system goes on overload if I watch, read, see, hear ANYTHING that is violent, sad or frightening.  I went to the Minion’s movie and it was too violent . . .

So when I watch TV it’s either HouseHunter’s International (lookie-loo travel), The Hallmark Channel (always a happy ending) or the Golden Girls. Sophia is my new role model.  She is wise beyond my years . . . and we have similar taste in food:

“I hate Jello.  If God wanted peaches to be suspended in mid-air He would have filled them with helium.” Sophia Petrillo

 

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.

Sneek Peek into my journal – Loosely Sparking

Sometimes wanting to be “perfect” stops me from finishing projects.  I’m now too tired to strive for perfection.   I figure it’s time to experiment and remove expectation to get my “spark” back.

I’m comfortable abstractly sloshing paint color around but “drawing” is another matter.  Put a pencil or pen in my hand and I tighten both my grip and expectation.

With that in mind, I purposely held the pencil very loosely and literally scribbled “areas” rather than try to draw perfect lines.  I didn’t bother trying to copy anything, look at any references, decide where the light was coming from or have a plan.  I just scribbled.   I like the looseness of the drawing and taking away expectation of being precise was enjoyable.

Maybe this is a good lesson to apply to other areas of my life . . .

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judy’s journal – Scribbled and scratched in the face with pencil and pastel chalk

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

“R” is for Running low on petrol

Have you noticed that I’ve been amusing myself writing poems lately?  (If you haven’t noticed that is evidence you are not reading my blog as often as you should be!)

My chronic fatigue has reared its “rear”.  Sitting and moving my fingers on the keyboard, one at a time, is about all the physical energy I have had to expend.  (mental energy is another matter . . .)

There once was a  lass

who ran out of gas

As her windshield grew hazy

she became quite lazy

removing the rust from her a_ _

"I hope you didn't hear that!"
“I hope you didn’t hear that!”
http://www.a-to-zchallenge.com/
http://www.a-to-zchallenge.com/

Sneak a Peek into My Journal – Looking for a spark

It’s been a rough several months.  I suspect that in order to flee all the snow in the Eastern United States my “Fibro-Fiend” needed a bit of sunshine so dropped in for a visit.  It’s been sunny and warm here and she just won’t leave.  

She’s a demanding house-guest and almost all my energy is spent focusing on her needs.   She doesn’t have a very good sense of humor either and I have to find ways to amuse myself.  I’ve not had the energy to participate in Year of the Spark so I revisited some old, EASY Carla Sonheim exercises looking for some spark.

Click here – Irritated Birds – to see how I made the birdies.

Put a beak on it!

Put a beak on it!

Blob Critters  (they don’t have names yet)

  • Made a blob of color using water-color
  • Found critters in the blobs
  • Drew a bit

Blob critters

Blob critters

That’s all folks.  Gotta go feed Fibro-Fiend. 

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

 

DRINK UP! – A Lesson on Chronic Stress

When I was a shrinkling listening was not automatic.  Thirty years later I’m on auto-pilot listening simultaneously on multiple levels: What clients are saying, what they are not saying, how they are experiencing it, what their body is saying, how what I’m hearing is connected to feelings in the last few days, years, lifetimes;  Listening for patterns, connections, disconnections  . . .

 Logic would have me think  it was more stressful being a psychotherapist in the beginning of my career.  So why, after just sitting and listening, I’m a zombie for days afterwards?  

This explanation about chronic stress might explain some of it (I agree with everything, except for the conclusion):

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‘”A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her audience. Everyone knew she was going to ask the ultimate question, ‘Half empty or half full?’  She fooled them all. “How heavy is this glass of water?” she inquired with a smile. Answers called out ranged from 8 oz. To 20 oz.”

“She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, that’s not a problem. If I hold it for an hour, I’ll have an ache in my right arm.”
 
“If I hold it for a day, you’ll have to call an ambulance. In each case it’s the same weight, but the longer I hold it, the heavier it becomes.”‘
 
“She continued, “and that’s the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”‘
 
“‘As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced.  So, as early in the evening as you can, put all your burdens down. Don’t carry them through the evening and into the night. Pick them up again tomorrow if you must.”
 
P.S.  I still blame much of my zombiehood on the fibromyalgia.  After all what else is fibro good for – it never listens.
Thanks Susan!

Sneek-a-Peek into my PRIVATE Journal

Not feeling very inspired cuz Fibromyalgia has been competing for my attention  but here’s a sample of what I’ve journaled for the journaling class:

Fishy Fishy
Fishy Fishy 19th Century Nursery Rhyme, not by me

Fishy Fishy in a brook

Papa catch ’em with a hook

Mama fry ’em in a pan

Baby eat ’em like a man

(You can read MY version Fishy Fishy Walk on Land – here)

*     *     *

Journal Prompt:  “You’re never too old to set another goal or dream another dream.” C.S. Lewis

Dolly at rest
Dolly at rest

I cut out Dolly (and some other images) days ago and stuck her in the journal book.  Unconsciously she wove her way into my journal free-writing during MaryAnn Easley’s journal class so I pasted her (Dolly, not MaryAnn) on the page.  I think she’s comfortable there even though I cut away the chair she was sitting in.

EXCELLENT presentation on Brain research & Chronic Pain conditions – Stanford University

If you have a brain in your head WATCH this!   Important information for everyone, whether or not you or anyone you know has a chronic pain condition (including – MCS, irritable Bowell, TMJ, Interstitial Cystitis, Back pain etc.).  It’s well worth your time.

Although the focus is fibromyalgia Sean Mackey, M.D., Ph.D explains how the emotions, the workings of the brain impact our physical well-being.

His presentation is 51 minutes long and then takes questions and answers.

Rosemary Lee, Seeking Equilibrium posted this on her excellent blog Seeking Equilibrium.  Rosemary keeps up with the latest research and I highly recommend her blog

Do you remember Englebert Humperdink?

Haiku “Ode” to Fibromyalgia

(haiku prompt “RELEASE”)

Fibromyalgia!

Please release me let me go!

romance is kaput

* * *

Unrequited love

I don’t want you anymore

time to get a life

 

How about adopting this song as the National Chronic Conditions Anthem!!  Wadda ya think?

Please release me let me go
for I don’t love you anymore
To waste our lives would be a sin
Release me and let me love again

I have found a new love dear
And I will always want her near
her lips are warm while yours are cold
Release me my darling let me go

for I don’t love you anymore
So release me and let me love again

Please release me can’t you see
you’d be A fool to cling to me
To live a lie would bring us pain
So release me and let me love again

I'm thinking about it . . .
I’m thinking about it . . .

“Release Me” (sometimes rendered as “Release Me (And Let Me Love Again)”), is a popular song written by Eddie Miller, Robert Yount, and James Pebworth[1] under the pseudonym Dub Williams,[2][3] published in 1946 . (Wikipedia)

If you don’t watch this you are stooooopid

Yes, I’m name calling to get your attention.  Watch this TO THE END!

Social psychologist Amy Cuddy shows how “power posing” — standing in a posture of confidence, even when we don’t feel confident — can affect testosterone and cortisol levels in the brain. . . .”

ERIN, THANK YOU for telling me about this!!!

 

Am I Whining? you bet!

“Thou Shalt Not Whine”  is a hand embroidered sign in my office that was given to me by my good friend Sharon.

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I do try to live up to that motto but today I am whiiiiiiiiiiiiiiiiiiiiiiiiiiining.   I have a headache, my body aches all over, my feet are burning, my brain is fogged and the only energy I had was depleted by the effort it took me to get in bed and take a nap*.  Whaaaaaaaaaaaaaaaaaaa!  Woe is me! Oh! woe is me!

"I'm not lissssssstening"
“I’m not lissssssstening”

Like all (or many) of us living with chronic conditions the key is life-style management to keep the symptoms at a low simmer instead of a rolling boil.  In the last several decades I’ve perfected life-style management:

judy’s Life-Style Management 

Overdo it quick

take advantage of the lull

then crash, moan and groan.

Whimper quietly

when no one is listening

It’s free therapy

1024px-Crying-girl

Did whining make me feel better?  Nope.  But it’s nice to know that even if I’m not feeling well

 my inner child is alive and kicking.

 *You don’t have to wash your hands after reading this post.  I’m not contagious.  It’s just fibromyalgia letting me know who’s in charge.

The Mask of Invisibility and Me

In 1996 I contracted an invisible “illness”.  I began experiencing excruciating burning pain in my hands, arms and legs followed by gastrointestinal, cardiological, dermatological, emotional “issues”.  The worst part is I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying between happy, content to annoyed and upset.

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In1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me – based on test, after expensive test coming back negative – that nothing was wrong with me and to go home and “Get a life”.DSCN1413

Forever imprinted in my memory is the chief of neurology at one of the major medical centers in Los Angeles (the doctor and medical center shall remain nameless because this is a true story)  looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychological issues” – he leaned forward, compassionately touching me on the knee and winked.  “Go home, live a good life and take up a hobby like kick-boxing.”  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.

DSCN1414

I looked for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to put a name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC.  I looked fine, acted fine, all tests were negative.  All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.

After years of escalating pain, exhaustion, depression, countless doctors and tests I really did qualify on all counts as a hysterical middle-aged woman .

Well over a decade after my initial symptoms fibromyalgia was recognized by the medical community as “real” and research has since shown that it’s a central nervous system, brain processing disorder.  

I’m no longer middle-aged or hysterical.  But the doctors were right – it was, it is, all in my head.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  Here’s a tiny sample:

  • Why, when you tell someone who is ill that they look good, they’re offended?
  • Practical ways you can encourage someone who is ill.
  • What’s the difference between a visible and invisible illness when it comes to one’s career?
  • What’s it like to go to college with an invisible chronic illness?

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.

Sugar Shun (Parenthetically yours) 8 Steps to Kick Sugar Cravings to the Curb. OUCH!

(Day #5 and no refined sugar.  Thanks Lisa for this article from Woman’s Health Network!)   

My “editorial” comments below are in (RED)

8 Steps

“Craving — and eating — sugar is not simply about willpower or emotions. (That’s true because I’ve not had willpower for a long time and because I am a therapist I am in COMPLETE control of my emotions . . . ) We now understand that there may be several underlying physiologic causes feeding what feels like a desperate desire for sugar. For one thing, it can affect our brains in the same ways drugs and alcohol can, making it addictive.”

Sugar Roller Coaster

“Can’t lose weight — no matter what you do?

Extra sugar and carbohydrates that aren’t being used by the body are generally stored in the liver as glycogen. If the liver is full, your body will make fat from the extra sugar and store it in existing fat deposits around your body, (AROUND my body like a bloated hula-hoop) which is why there is such a direct link between sugar and weight gain.”

“Sugar can also directly affect you hormonally by turning off a gene that controls your sex hormones. Without this sex hormone-binding globulin (SHBG) gene, levels of testosterone and estrogen can become unregulated, leading to symptoms like fatigue, anxiety, irritability, and more.(MORE, there’s MORE?!)

So here’s what you can do to stop your sugar cravings and all the corresponding health effects:

Bob Blobfish sez: "Here she goes . . .again"
Bob Blobfish sez: “Here she goes . . .again”

“Step 1: Balance your hormones. Just before menstruation, when estrogen is low and progesterone is on its way down, beta-endorphin levels in your brain are at their lowest. These cyclical hormonal and neurotransmitter fluctuations may explain why many women who experience PMS and perimenopause also have sugar cravings and the accompanying serotonin–endorphin bursts that high-sugar foods can provide.”  (Hormones? – at my age there aren’t any left to balance)

Step 2: Add nutrients. Specific micronutrients like zinc, vitamin C and the B vitamins are particularly helpful in calming sugar cravings by influencing serotonin production. Equally important are omega-3’s, which are crucial for regulating mood and inflammation — factors that are both associated with cravings.”

Step 3: Mix protein (or fiber) with pleasure. Combining treats with a stick of cheese, a few nuts, a glass of milk, or some vegetables will help balance the sugar and insulin surge and allow a gentler increase in blood sugar and insulin. Protein shakes make great snacks, too.”

Step 4: Investigate intestinal yeast. (Investigate?  Sounds like yet another TV show – Intestinal Yeast Miami) Yeast thrives on sugar. If your intestinal (and vaginal) bacteria are out of balance, they are more likely to welcome yeasts like Candida.(Isn’t Candida is one of the stars on the TV show Mistresses?) An overgrowth of yeast in the intestine (or system-wide) can lead to extremely intense cravings for sugar, fatigue, fuzzy thinking, and digestive issues.  Going on a yeast-free diet is the first step to eliminating these sugar-hungry cells because they can’t live without sugar and refined carbohydrates. Take away their food and they go away.”

The BOOT
The BOOT

Step 5: Avoid acid-forming foods. Red meat is high in a pro-inflammatory molecule called arachidonic acid. Eating a lot of meat and refined carbohydrates tends to increase inflammation and acidity, causing the body to crave sweet foods in an attempt to maintain balance. Choosing anti-inflammatory foods high in omega-3 fatty acids, as well as those that are alkalizing and antioxidant-rich, such as fruits and vegetables, can offset the damage and the cravings associated with this dynamic.”sensitivities

Step 6: Explore food sensitivities. Food are more and more common these days and they can lead to extra sugar intake by leaving us foggy-headed and fatigued. These symptoms logically drive many of us to a sugar pick-me-up to feel better or complete our daily tasks. (ah it is logical why  I drive to Ben & Jerry’s to pay a social visit) The most common food allergies are to gluten and dairy, but others to explore are corn, eggs, soy, peanuts, and citrus.

Step 7: Lower your stress. Any stressful situation can lead to less than optimal eating habits, but stress itself increases cortisol levels, which eventually increases hunger hormones. This can push many women with stressful jobs and lifestyles into a pattern of nighttime cravings, over-eating, and unwanted weight gain. (Tell me about it . . . ) Over time, these women reach adrenal imbalance and extreme exhaustion. And they find the only way to get through the day is to drink lots of caffeine and consume sugar for quick energy bursts.” (not to mention the only way to get through the night)

Step 8: Refrain from sugar for 3-5 days in a row.We know how hard it can be to do, but avoiding sugar for just three days can make a huge difference for some women. Trust us on this one! For others, it may take longer for their cravings to diminish. But eliminating the cyclical crash-and-burn bursts of serotonin and beta-endorphin from sugar and refined carbohydrates can help your body normalize its receptors and neurotransmitters. This way, your brain isn’t constantly sending the message that it needs more sugar.”  (I’m blessed that even with a completely fogged-out brain the message I need sugar still gets through)

For the entire unedited article click here: 8 Steps to Kick Sugar Cravings to the Curb

“Ode” to Sugar

Refined sugar is my drug of choice.   Lately I’ve been on a binge.   When my energy is flagging sugar is my go-to drug.  It’s also my choice when I’m bored . . .in pain . . . when I’m sad, happy . . . when it’s raining . . . snowing (anywhere in the world) . . . cloudy, clear, night or day . . .  

O’ lovely sugar

sweetest seductress ever

you never grow stale

*

O’  sugar of mine

as pure as the falling snow

cooling my senses

*

O’ sugar my love

with pangs in my head &  heart

you are a goner

I’ve not been feeling very well lately and no longer know which comes first – sugar or my symptoms.  Ultimately it makes no matter for I know that sugar is not good for me.  For the next month I’m going to ATTEMPT to keep refined sugar and it’s “carrier” white flour at least 10 feet from my lips.  (I was going to say mouth but I need those extra inches for safety.)

judy's journal, collage
judy’s journal, collage

I’ve tried abstaining from eating refined sugar before . . . . wish me strength of character and will (luck isn’t going to cut it). 

P.S.  Rosemary Lee, Seeking Equilibrium, is joining me.  Anyone else?  

Add your name in the comments box.  I dare you!

Despair = Suffering without Meaning

At the risk of jinxing myself I’ve been puzzling over why I do not suffer as much from fibromyalgia than the women (and men) I know who are in more pain, have more co-morbid conditions and debilitating symptoms than I do.

And because they are, for the most part, held hostage by their medical conditions they are unable to continue to work in their professions and live a “relatively normal” life.   I’m not sure my life is “normal”.  I’m often stopped in my tracks by exhaustion, distracted by pain but I’ve been blessed by being able to continue to work in a profession that gives my life purpose and meaning.

What’s prompted all my questioning and thinking?  

I’ve been reading books written by Viktor Frankl an Austrian neurologist and psychiatrist who was a Holocaust survivor. In his book Mans Search for Meaning he writes about his incarceration in nazi death camps where he observed that those who did not believe their existence had meaning succumbed in greater numbers from starvation and disease than those who held the belief that their life had meaning.

Their purpose didn’t involve grand schemes of saving the world, curing people or groundbreaking discoveries. Purpose ranged from finishing a manuscript of a book begun before incarceration, staying alive for a family member or simply believing God had an unknown reason for them to live.

So?  What part does purpose and meaning play in our lives? in your life?  Does having purpose and meaning help reduce emotional or physical suffering?  I don’t pretend to have the answer, just the question.

Here’s Dr Frankl in an interview about finding meaning in difficult times.  (He talks about his experience in the concentration camps toward the end of the interview.)

“. . .the man on the street knows that meaning may not only be found in creating a work and doing a deed, not only in encountering someone and experiencing something, but also, if need be, in the way in which he stands up to suffering.” Viktor Frankl

 

Can we handle the truth?

Veteran’s medical care and the private medical system. I rarely post about current events or politics.  After reading  a clear-minded, HONEST and APOLICTICAL post by Dr John Mandrola I’m making an exception.

Here are just a few thought provoking paragraphs from his post. (bold/red print is mine)

The VA healthcare system — Can we handle the truth?

by  JOHN MANDROLA, MD

“I am also connected to veterans’ healthcare. For it is in the VA system that I learned to be a doctor—a feeling doctor, an imperfect doctor, a human doctor. It’s ironic, and not often said, that the $48 billion-dollar VA healthcare system gives as much as it takes. It’s impossible to put a value on the benefit to society from the legions of caregivers who emerge from years of training in the VA system. Algorithms be damned; wealthy Americans benefit from what young doctors learn in the VA system. Veterans give when they serve in battle, then they give again as patients, as teachers.”

“And it’s not just the past that connects me to veterans’ healthcare. My wife Staci works as an attending physician in hospice and palliative care at the Louisville VA. When we share stories, I mostly tell of relieving the palpitations of the rich, she of relieving the suffering of dying veterans. Another irony of the VA: you don’t get Staci if you have private insurance.”

imagesIndicting Obamacare:

“This is a huge mistake. Obamacare fails because it lacked the courage to do enough. Its proponents avoided the truth. (Maybe they had to.) What policymakers set out to do was to correct a great American scar—that a country this rich does not provide basic healthcare to all its people. The problem was that Americans were not told the truth. A leader (or leaders) should have said that to get care to all people, excesses and inefficiency would need to be removed. Hospitals would not look like luxury hotels. Medicine and surgery would be for the ill, not the worried-well. Evidence, not eminence, would guide medical care. And prevention of disease would come not from doctors but from patients.”

“But Americans didn’t get the truth. We got magical thinking about metaphorical free lunches, insurance reform, cost-saving EHRs, patient-safety “quality forums,” and the like. Nonsense. All of it.”

“The VA system is the truth. Rationing is the truth. Triage is the truth. Imperfection is the truth.

And yes, death, too, is the truth.”

 

Failure to see the obvious:images-2

“You simply cannot deliver suburban excesses—the antithesis of efficient and honest healthcare–to the growing numbers of veterans. Thank goodness. Both Dr. Harlan Krumholz and Dr. Kevin Pho remind us that if evidence, not hype, is considered, the VA system performs either better than, or comparable to, the private sector.”

“Yet this should be obvious to anyone who reads anything about US healthcare. It’s clear that the private system is broken. If you hold up the US private system—with its humanity-extracting EHRs, expanding layers of bureaucracy, conflicts of interest, expense, inequalities, and geographic and racial differences in care–as a model that the VA should aspire to, you are not mastering the obvious. My colleague at theHeart.org Dr. Melissa Walton Shirley suggests veterans should be moved to the private system. I wouldn’t do that; veterans deserve better than our mess”.

images-1“Yes, of course, patients die waiting for medical care. It’s utter nonsense to call that a scandal. Why? Because patients die regardless of medical care, and too often, as a result of medical care. This death-denying culture has led to a major humanitarian crisis, one playing out in nearly every ICU in this country.

But please don’t misunderstand. I’m not arguing that medical care is pointless, or that we should not try to extend and improve human life. Rather, it is time to adjust the mindset that more care or faster care is always better care.”

Read the entire article click here. Can We Handle the Truth?

 

Year of the Fairy Tale – Princess, the Pea & Tenacity

This month’s fairy tale is the Princess and the Pea.  If you remember, the old queen tests to see if the bedraggled girl the prince is to marry is a REAL Princess.  She puts a pea under 20 mattresses and twenty eider-down beds.  If the girl is a REAL princess she will feel the pea as she sleeps.

I feel discomfort at everything in bed at night: slightly bunched up night-gown, the buttons on the mattress tufting, a hard pillow pressing my ear.  All this time I thought it was fibromyalgia sensitivity to pressure. Turns out I must be a REAL Princess!

(Assignment is to do vignettes of possible “bed scenes”)

The test of a REAL princess is tenacity and ingenuity, not vegetable intolerance.

The test of a REAL princess is tenacity and

ingenuity, not vegetable intolerance.

Year of the Fairy Tale
Year of the Fairy Tale

Too Pooped to Pop

Every once in a while I have the urge to talk about ME.  “Uh oh”, you’re thinking, here she goes again . . .

P1020589Today I’m too pooped to do anything other than focus on me. It’s the only subject I’m an expert on and don’t have to “think”.

When I stopped taking a dopamine enhancing drug early last year I crashed.  The exhaustion that accompanies, or perhaps drives, Fibromyalgia/Chronic Fatigue hit me like a tidal wave.  (Fibromyalgia and Chronic Fatigue Syndrome* seem to be over-lapping conditions for many people.  The verdict is out whether it is one and the same or different maladies).

It’s so hard to explain what it is like to feel exhausted all the time.  I’m not sleepy, not tired, not fatigued.  It’s an exhaustion, a heaviness that seeps up from the bone marrow.  It saps me, not only of physical energy but of mental energy too.  I’ve been staring at the TV all day, sitting like a lump, no energy to get up and even do things I enjoy.

I often explain the fatigue as like running through quick-sand that is up to my eyebrows.  I can push through it – only for a while . . .

The exhaustion is invisible.  The loss of memory is often public.  Yesterday I called 3 different clients the wrong name.   My brain is in gear but the gears don’t mesh.

I’m blessed that I have a profession where I’m in control of the schedule.  Many people are not that fortunate and have to go on disability, IF they can get it or it’s available.  Men, I believe, often have it harder.  When they have to give up a job, retire the  stigma is harsher for not working, not being “productive”.  And because fibromyalgia/chronic fatigue are disproportionately a “woman’s disease” men often do not get appropriate treatment or are labeled as malingering.

Estimates range from 2% to 4% of the population has Fibromyalgia/Chronic Fatigue.  Chances are you or someone you know is living with the symptoms right now.

*Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:

  • Fatigue
  • Loss of memory or concentration
  • Sore throat
  • Enlarged lymph nodes in your neck or armpits
  • Unexplained muscle pain
  • Pain that moves from one joint to another without swelling or redness
  • Headache of a new type, pattern or severity
  • Unrefreshing sleep
  • Extreme exhaustion lasting more than 24 hours after physical or mental exercise

The Common threads between Fibromyalgia and Chronic Fatigue

Healing, The Living Matrix

I don’t often talk about it – in public at any rate – but I have been exposed to many cutting edge or “far out”  health & healing techniques and processes.

David Bresler, Ph.D. and Marty Rossman, MD, the founders of the Academy for Guided Imagery  (AGI), have been on the forefront of  alternative medicine and brought leading edge researchers and doctors to speak at  AGI conferences I attended.  Much of what I heard “blew me away” at the time.

This video reminded me of many of the concepts I heard about long ago.   Watching it made me rethink my heart “problems”.

Even if your ticker is ticking just fine it will make you view your heart differently too.  

Take the time to watch and expand your world of “possibility”.  

(And for those of you who have not been “cured” by western mainstream medicine, watch!)

http://vimeo.com/21432874

Thanks to Kathe Caldwell, hypnotherapist and instructor par excellence for sharing The Living Matrix Video with me!

Fashion Forward Friday – Judy’s Chronic Conditions’ Style

When I saw Matt Lauer interview my Muse (muses) fashion icons from my new favorite blog  Advanced Style   I was inspired to “take it out of my closet” and inspire all of you who need inspiring too:

Me sleeping

  I’m at my best when I’m sleeping.  I don’t know that I’m in pain, depressed or exhausted until I wake up.  Here’s a sleep wear  ensemble I wear when I need to feel up when I’m down. . . Or cheerful while I’m asleep .  . .Or colorful when I’m not awake.

The bottoms are drawstringthe top oversized and the bracelet is stretch.  All are designed not to impinge on my delicate body and awaken me from slumber while accommodating the possibility of my gaining weight while I’m sleeping from my before bed snackS

Fuzzy

I LOVE to mix textures.  Notice how the fuzzy flannel of the pajama bottoms beautifully play off  the soft cotton knit texture of the t-shirt. The smooth reflective bangles around my wrist add just the touch of surprise to bring the outfit alive.

Particularly observe how the red top echoes the red polka dots.  The round bangles of the pink necklace continue  the “round motif” as well as pick up the pink polka dots in the pajama bottoms.

As a final touch I echo all the colors in the pajama bottoms with a tasteful turquoisy-blue ring and a Chartreuse flower.

Turquoisy-Blue echoes turquoisy-blue polka dots
Tasteful Chartreuse flower

I never wear earrings with my night-time attire as they get in my way while I slumber.

I hope you are inspired to Fashionably Flaunt Your Chronic Condition.

IMPORTANT Bonus Fashion Forward tip of the day:  ALWAYS wear ALL your make-up to bed.  You will wake up in the morning looking your wonderful best.  

Remember – When you LOOK YOUR BEST you ACT YOUR BEST and then FEEL YOUR BEST.

Me at my best

My Stress Checklist Reminder & widespread pain

Even when I’m spaced out in front of the TV, gardening, petting Max I’m stressed out. It’s important that I remind myself of that since stress has become my norm.

It’s easy  for me to forget that with a chronic medical condition(s) my body itself is the stressor.  Pain is a signal that something is wrong and tells all my systems to be on alert . . . 24/7

This is a comprehensive easy to read article on stress and provides an excellent reference.

http://www.helpguide.org/mental/stress_signs.htm

There is a check-list in the article.  I love check lists so of course took it.  Here are my surprising results:

Stress Warning Signs and Symptoms

Cognitive Symptoms

  • Memory problems  No problem, no memory.
  • Inability to concentrate I am a great multi-tasker
  • Poor judgment Posting this post
  • Seeing only the negative  I can barely see past my own nose.
  • Anxious or racing thoughts Never, I concentrate on relaxing
  • Constant worrying  “What me worry?” 

    Alfred E. Neuman

Emotional Symptoms 

  • Moodiness  Only when I’m moody
  • Irritability or short temper  I get  irritable when my temper is short.  
  • Agitation, inability to relax I try to relax all the time
  • Feeling overwhelmed This list is overwhelming
  • Sense of loneliness and isolation  I long for isolation . . .
  • Depression or general unhappiness Eh?

Physical Symptoms

  • Aches and pains  That’s what’s creating the stress in the first place.
  • Diarrhea or constipation  There are limits to my self disclosure.
  • Nausea, dizziness  Does ditsy count?
  • Chest pain, rapid heartbeat  No kidding!
  • Loss of sex drive  X-rated, no comment
  • Frequent colds Only my feet

Behavioral Symptoms

  • Sleeping too much or too little Much is more
  • Isolating yourself from others What other’s?  Remind me who they are.
  • Procrastinating or neglecting responsibilities Who me?, never! I’ll get to my paperwork . . . soon.
  • Using alcohol, cigarettes, or drugs to relax  My drug of choice is carbs
  • Nervous habits (e.g. nail biting, pacing) Shaking my foot
  • Eating more or less  More is more

This stress checklist has irritated me.  I’ll decide if I’m stressed after I eat some cake and relax .

How Pain Changes the Brain

Creation of pain

Haiku-Heights Prompt, CREATION

 works silently in the brain

while the body screams

Whether or not you have chronic pain the article in the on-line magazine I’ve “bolded in red” below will be of interest.  Brain research is beginning to reveal important information for us all.

New Issue of Fibromyalgia & Chronic Pain LIFE is now available online and in print

The Sep/Oct 2012 issue includes the following feature stories:

* COVER STORY: The IOM Report that is Changing Your LIfe: Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research

* What Latest Imaging Technology Reveals about How Chronic Pain Changes the Brain

* Pain Tracking–Self-Management Tools to Help You Know Your Progress

* Pet Therapy to Melt Your Pain  (Max recommends this article although he’s a bit disappointed it’s about a bunny)

* September is Pain Awareness Month – Upcoming TrueHelp Disability Web Expo

The mission of the National Fibromyalgia & Chronic Pain Association (NFMCPA) is to build a united patient and medical community to create a strong voice and organizational base to educate and execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people with fibromyalgia and overlapping conditions. On our website you can find: support groups around the world, information about overlapping conditions, research, archived newsletters and press releases, and support.

National Fibromyalgia & Chronic Pain Association

31 Federal Avenue
Logan, UT 84321

Phone: 801.200.3627
newsletter@fmcpaware.org

Going for Gold in Power Napping

Watching the Olympics these last few days I marvel at the stamina of the athletes.

As a youngster I thought I wasn’t very athletic:  When I played soccer I would get exhausted running up and down the field;  When I was on the swim team the workouts were excruciating, sleeping for hours afterwards;  I hated doing calisthenics, my muscles hurting for days;  The impact of the volley ball hurt my hands so much I dreaded having to serve.

In high school I got out of physical education by playing the violin (badly) in orchestra.  Even then, holding the violin under my chin hurt.

I just thought I didn’t have the “right stuff”.

In retrospect I am sure that I had fibromyalgia symptoms as a child.

These days I am extremely fatigued – read exhausted – without running up and down any field or swimming laps. Fibromyalgia may have stopped me from becoming a world-class athlete but it’s helped me discover I do have the “right stuff” – I’ve become a world-class power-napper and I never tire practicing.

Desperate Measure for Fibro Exhaustion

Judy's Journal page

Here’s what I’ve decided to do to minimize my fibromyalgia exhaustion!

Desperate measure   – Take 1/2 a Mirapex* tablet. That will cut the exhaustion in half!  AND . . .

  • I’ll compulsively eat half as much and lose weight.
  • I’m not sure how the 1/2 tablet will affect gambling and sex addictions since I hadn’t developed those.  But since I will only develop half of the addictive side effects I’ll ask my husband which one he prefers.
  • I’ll confine the narcolepsy to after dark.

*Mirapex, Other Parkinson’s Disease Drugs Linked to Compulsive Gambling, Hypersexuality
Date Published: Tuesday, April 14th, 2009

“Mirapex and other dopamine agonists used to treat Parkinson’s Disease have been linked to the development of extreme behaviors by yet another study. According to researchers at the Mayo Clinic, one in five patients (I think I met several at the bakery counter) taking such drugs in a recent study developed behavior disorders, such as compulsive gambling or hypersexuality.”
“Parkinson’s Disease occurs because of a lack of the neurotransmitter dopamine in certain areas of the brain. (Some fibro patients have lower levels of dopamine) A dopamine agonist works by mimicking the effects of this chemical. However, dopamine is also known to produce a “rush” in the brain of people who are anticipating a reward or excitement. (So that’s why I RUSHED to eat chocolate croissants every day – sometimes rushed a few times a day) Many experts believe that such a biochemical reaction is behind the reports of compulsive behavior linked to dopamine agonists like Mirapex.”

I TOLD you I was desperate . . .

P.S. My Horoscope for today:

“Knowing the truth is always important to you, but the Libra Full Moon’s activation of your 9th House of Big Ideas motivates you to get your facts straight. However, you could become blinded by your own desires now when making your plans. Although you may realize that you’re exaggerating, others still take what you say at face value. Carefully distinguishing the facts from the fantasies is a smart move for all involved.”

Desperate Times call for Desperate Measures

For those of you new to my blog (er, Max’s blog) I have an “affliction” due to alien possession.  It’s called fibromyalgia.  Fibromyalgia is a misnomer dating back to ancient times when the medical establishment liked to name things with Greek roots because it sounds more scientific.  The rest of you who know my whole weary tale can skip down to the red print.

My main symptoms of this central nervous system disorder are depression, allodynia a good Greek name for whole body pain, mental fog (where are the Greeks when they are really needed – FOG is a soft, floaty description for mental muddle, mental muck) and exhaustion.  There are many other symptom since the central nervous system impacts every system.   I’ve been one of the lucky ones where the aliens decided to lay heavy on the depression and exhaustion and go light on the fog and pain.

I’ve been blessed that my symptoms have been helped for several years – not eliminated – through the miracles of modern meds. That was  until I had to go off (that’s an interesting image) my miracle drug Mirapex because one of the side effects was narcolepsy (another Greek name).  Unfortunately, I was awake enough of the time to indulge in another side effect – compulsivity.  I ate obsessively, compulsively like an addict.  Again I was blessed that I stopped the drug before it led to compulsive gambling and sex – I kid you not!

Which brings me to the present.   The good news is I no longer fall asleep at stop lights or brushing my teeth.The bad news is I’m EXHAUSTED.  pooped-out-of-my-mind.  In the morning I wake up exhausted after sleeping 10 hours.  So after a few hours I take a 2 hour nap.  It’s almost impossible to describe being exhausted without doing anything that is exhausting.   I’m NOT TIRED, mind you.  Exhausted.

I’ve stopped exercising as the thought of it exhausts me more.  I’ve reverted to self medicating myself with anything that contains refined sugar and/or white flour searching for an energy pick me up.  I stare out into space thinking of all the things I should be doing, need & want to be doing and get more exhausted thinking about how I will feel exhausted doing them.

My in-basket has now grown to over 300 e-mails not attended to.  I forget to call back clients who are forgiving and wonderful as always.  I avoid calling friends, not wanting to recount the exhausting litany of reasons why I’ve not called nor responded to them.  I don’t walk Max who patiently waits for permission to walk himself.

I woke up this morning, exhausted as usual, and said to myself. “Judy, this now calls for desperate measures.”

However, I’m too exhausted after writing all this so I’ll tell you what my desperate measures are tomorrow.  I’m going to lay down now and get in another nap before it’s time for bed.

What an incredibly wonderful world this is to be missed by people I’ve never met in person yet feel like family.  Wendy, Laurie thank you so much for your concern

I’ve been off for a while – off-line, off mentally, physically and dare I say emotionally. (It’s a bit blasphemous in the therapeutic community for a therapist to be off emotionally and admit it SO PLEASE don’t tell anyone.  I DO have a reputation to uphold)

ImageNot sure which is the chicken, which is the egg.  All this heart tweaking, testing, stopping miracle Mirapex (click for the saga) has set off my fibro “stuff” and/or the fibro stuff caused the heart stuff which set off the fibro stuff.

The upshot:  My body feels like it’s been hit with a train, my brain isn’t remembering, and my affect is rather flat – that’s therapist speak for “depressed”.  I’m blessed that I have enough energy to go to work, and focus while I’m there.  I find other people’s difficulties and issues far more interesting than my own.

This is the first time I’ve used the new word press format – and the WordPressies already gave this post a title: “Title (optional)”   The WordPressie People are really smart.  Most things in life are indeed optional – even health.

I LOVE LOVE LOVE all of you for being so LOVING!

j

Perfect Rainy Day for Celeste Cooper (and my bug)

Not a lot of people believe me when I tell them I wait for rain to wash my car.  I pull it into the driveway and when it’s wet enough I sponge it off, pull it into the garage and dry! Lickety split.  It’s raining right now in sunny southern California.

*Celeste, http://www.thesethree.com/ lives, works and writes in sunny Arizona where, when the rain falls, lightening booms.  I thought about Celeste today because both her poem and prose speak of rain.

Celeste Cooper

I Am But a Visitor Here©

by Celeste Cooper

I fondle the threadbare cloth, as I don the table,
Honoring the calls of nature, thankful I’m able.

The evening mist whispers,” Listen, hear my name,”
Interrupted by thunder, earth trembles, making its claim.

Learned chipmunks frolicking, hurry, to tidy their throne,
Drumming rain upon an awning, nature sways to the tone.

Hummingbirds arguing, swooping the found red feeder,
Obliviously provoking, rejecting, “who is their leader?”

Merely hobos we are, here, the land inborn by time,
Crickets melodically join in song, all claiming it’s mine.

Lightning enlightening the sense of my presence here,
Nature’s orchestra, the teacher, those willing to hear.

Strings strumming from the river, float up as a gift,
Deer blindly oversee meadows against the cliff.

Portly pine bellowing scent, permeating the park,
Nature quiets its soul, timidly soothed by the dark.

Flames speak, stimulating thoughts that are clear,
The campfire is laughing, “You are temporarily here.”

Brazen promise seen through the bifocals of time,
This inheritance, nature summons, proclaiming its mine.

Enchanted by this instruction, the beauty, I endear
The fact of the matter, “I am but a visitor here.”

Every Day a Gift ©

“I will meet each day with a grateful heart. It is through admission that I am able to have positive expectations. I accept the reality of temptations that could deconstruct my day. I understand that as the sun meets the rain, the rising up of peace will meet my pain. I am mindful of thought blocks and keep expectations in line with my reality. I will honestly greet positive with paper and affirm each day as a blessing not to be wasted.”
 
*Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: the Mind-Body Connection (co-author, Jeff Miller, PhD)
Celeste is a retired advanced trained registered nurse.  She cared  and mentored others, and practiced as a clinical educator who wrote and implemented continuing education programs.
She has experienced personal struggles trials, setbacks, and successes as the result of illness, which brought her ambitions to an abrupt halt.
Celeste advocates for education, change, awareness, and research, and her goal is to share ways to overcome obstacles and turn “road blocks” into a “road trip” full of opportunities.
 
Find LOTS of good information about Fibro, CFS and Myofascial pain, her book (and tips for journaling as A Way to Connect Your Body-Mind-Spirit) on Celeste’s web-site – http://www.thesethree.com/
 
Time to wash the car before the rain stops.
Wear sunglasses in the rain, never know when the sun will come out!
 SEE! A perfect day for car washing and Celeste’s wonderful poem and prose.  Whata combination . . .
 
 

Fibromyalgia, CFS Medical News

My first reaction was “I’m back” when I started taking a dopamine enhancer (Mirapex) for my fibromyalgia. “My” fibromyalgia!  Sounds like I’m possessive OF it instead of possessed BY it. . ..trust me, I’d gladly let it go, give it up, dump it, get rid of it, send it away . . . sorry, just got on a roll . . .

Back to the point of this post:

Even if you don’t have fibro or Chronic fatigue chances are you know someone who does.  It is estimated there are 10 million people with the condition in the United States alone.

I urge you to take at least a quick look at the latest edition of Fibromyalgia, Chronic Pain newsletter.  There are several links to the latest in medical information in the newsletter.

http://www.fmcpaware.org/user-subscriptions/archive/view/mailid-66/key-0fbd2e860c4cbfd5c4294e4c6e2b3dc1/subid-18999-3034782d559f8fa1f3990cf0a9d7a334

In the event you aren’t wanting to click on the link here’s one of the articles that pertains to dopamine:

Dopamine in Fibromyalgia & Chronic Fatigue Syndrome
Low Dopamine: How It Makes You Feel & How to Fix It
By Adrienne Dellwo, About.com Guide

“Dopamine has different roles in different areas of your brain. In the thinking areas, it makes you able to focus your attention. Low levels of dopamine in this area are linked with ADD/ADHD. In the movement areas, it helps you control how your body moves. Extremely low levels here lead to Parkinson’s disease, which is characterized by tremors and problems with balance and coordination.

People with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) generally have low dopamine levels as well. Symptoms of both conditions include both cognitive effects as well as movement and balance problems.

Low Dopamine

No neurotransmitter acts alone. They all work together in a complex web of activity that scientists are really just beginning to understand. Still, experts have been able to associate different neurotransmitter imbalances with certain conditions and symptoms and find some ways to help boost or decrease activity.

Low dopamine levels are associated with the following symptoms:

Stiff, rigid, achy muscles
Tremors  (restless leg)
Impaired fine motor skills
Cognitive impairment (called brain fog or fibro fog)
Inability to focus attention
Poor balance and coordination
Strange walking pattern (gait), frequently with small steps
High levels of dopamine, on the other hand, are associated with addiction, euphoria, hyperstimulation, excessive focus, suspicion, and the inability to separate what is important from what isn’t. If you’re taking medication that increases your dopamine levels, you should let your doctor know if you have symptoms of high dopamine, which is associated with psychological side effects.

Neuroleptic (antipsychotic) drugs lower dopamine levels, so if you’re taking anything in this class for another condition, you’ll want to talk to your doctor about symptoms that could be related to low dopamine. Common drugs in this class include:

Clozaril (clozapine)
Haldol (haloperidol)
Risperdal (risperidone)
Seroquel (quetiapine)
Zyprexa (olanzapine)

Increasing the Availability of Dopamine

Drug treatment of low dopamine levels may include stimulant therapy with Ritalin, Concerta and Methadate (all of which contain methylphenidate).

We don’t have a lot of research confirming that food can boost dopamine levels in your brain, and even if it can, it would take prohibitively huge amounts to have the desired effect. In spite of the lack of hard evidence, some practitioners recommend:

Tea (black or green)
Apples, bananas & watermelon
Blueberry extract
Red wine
Beets, beans & legumes
Chicken
Cheese
Eggs
Fish
Wheat germ

Supplements believed to help raise dopamine levels include:

NADH
L-Theanine (supplement form of amino acid unique to black and green tea)
Omega-3 fatty acids, from fish oil or flax seed oil
Rhodiola rosea
A note on tea & theanine: Studies show theanine increases both norepinephrine and dopamine while lowering glutamate levels, all of which can have a positive effect on those of us with FMS and ME/CFS. Research is mixed, however, on how theanine impacts serotonin levels. If you decide to try theanine, track your symptoms to see if serotonin-related symptoms get worse.

While it’s generally safe to experiment with these kinds of foods, don’t expect miracles and avoid extreme changes to your diet. Be sure to make changes slowly, and track your dietary changes and symptoms in a symptom journal to get an accurate gauge of what may be helping. You should always work with your doctor to decide what methods to try and how successful your treatments are.”

Deprived of Touch

(With fibro, for those of you who don't know, the brain registers normal pressure as discomfort at the best and pain at the worst. Often people are reluctant to give a hug and we avoid unexpected or pressure since certain kinds of touch can be painful.)

In view of National Fibromyalgia Day today I was reviewing some of my therapeutic visual journals. When I came across these pages I did some time ago I recalled the studies done on baby Chimps.

In the 1960’s, Harry Harlow did research on baby monkeys and touch deprivation. The baby monkeys  were well cared for except they were touch deprived. They had no contact from other monkeys and little contact with their human researchers. They were put into a cage with  fake mother monkeys made of wire mesh with bottle of formula attached for the baby monkeys to drink. A second fake mother Monkey was made of soft and furry material with no bottle.

The baby monkeys clung to the soft mother monkey for hours. They would not go to the wire mother for food. Older monkeys would cling to the cloth monkey and when hungry would go to the wire monkey for brief periods of time to eat. When frightened all infant monkeys went to the cloth mother.

When the monkeys grew up, they showed anti-social behavior and could not get along with other monkeys or nurture their young because of the touch deprivation they received as infants..

Before  this discovery children in orphanages often grew sick and died from failure to thrive or when adopted had “attachment disorders”.  Based on Harlow’s discovery no one knew that these symptoms were a result of touch deprivation.

Some other findings:

  • In the 1970’s, James W. Prescott researched 400 cultures around the world. He found that societies that lavished more affection on infants and young children and were tolerant of teenagers expressing sexual affection towards one another were less violent than other societies.
  •  Seniors who are touched on a regular basis are healthier and less likely to develop Alzheimer’s disease and dementia.
  • Pre-mature babies who are touched on a regular basis gain weight more quickly than babies who are not touched.
  • Healthy touch from another person slows the heart rate, decreases the levels of cortisol in the system, and eases anxiety.

Reach out and touch Someone!

Angry, WHO? ME?

Collage

After I was diagnosed with fibomyalgia in 1996 I “treated” myself with therapeutic creative expression in a form of visual journaling.  Years later  I showed them in a PowerPoint presentation at the National Fibromyalgia Awareness Day in 2009. It was the first time I shared these pictures and I felt a bit exposed and vulnerable.

When I  made this collage I was having fun tearing out magazine pictures, concentrating on colors and shapes. The male body underneath the large face was pasted there because I thought it humorous to have a giant female head on a muscular, agile male body.

Until that presentation I had never looked at my pictures from a distance.  When I saw this collage projected larger than life onto a screen I was stunned.  It takes a LOT to anger me.  While anger was outside my conscious awareness my unconscious was furious.

I also realized that the jumping body underneath the female face represents the fibro – strong, active. Above the neck all I can do is be still with fury.

(I’m still not sure what the yellow paper over the nose is about).

The large head sees but doesn’t speak. The small head speaks but doesn’t see.

It still unnerves me a bit.

National Fibromyalgia Day is May 12th and events are going on around the United States.

To find an event near you click on this link

http://www.fmcpaware.org/awareness-day-national-events

Glumfish and Me

Every heard of a Glumfish?  Neither had I.

The word “Glumfish”  is from Salman Rusdhie’s Haroun and the Sea of Stories where the story begins with a super sad city that had forgotten its name and had a mournful sea full of glumfish, which were so miserable to eat that they made people belch with melancholy”.

I love the name – GLUMFISH  – I find it to be quite poetic given my current state of  “fibro-glum”.

Wondering what a Glumfish might look like I did some  Glumfish BLOB-Pictures.


1. Took cheapie water-colors and wet a blob on the paper and droped LOTS of watercolor on the water blob and let it spread and dry.

watercolor blobs

2.  Turned the paper blobs round and round till

I “saw” a Gumfish shape and

outlined it with marker.  Added some glum eyes and mouths.

3.  Cut them out and put them on a piece of tissue paper.

4. Decided my Glumfish needed an aquarium.  Found some tissue paper, added some sea-weed.  Decided not to paste my glumfish down.  They need to swim freely and not be STUCK.

It’s ok to be glum, just not stuck.

The High Price of Gas and Road Flares

For those of you not familiar with fibromyalgia and other kinds of chronic conditions —  auto immune included — I’m flaring.

Flare does NOT mean: I’m set on fire with gusto;  Enraged; or my hips are getting wider (than they already are).  I’m in a fibro-flare which does mean that my symptoms are loudly reminding me I’m not cured and I need to simmer down a bit.

And the stress that triggered the flare? – I got lost on the freeway.

In hindsight it’s a bit like a Marx Brothers comedy on wheelsI started out going the right way, and thought it was wrong.  So I got off the freeway and got back on the wrong way thinking it was the right way, but I was wrong.

Being the “man” that I am I hadn’t asked for directions when I started out.  After almost ending up in Cuba I decided to pull off the freeway and find someone who could tell up from down and north from south.    I pulled into a church parking lot.  Church people wouldn’t steer me wrong!  And a very nice gentleman “told me where to go”.

Back on the freeway, now heading in the right direction that I thought was wrong in the first place I noticed I was running very low on gas — both the car and me.   Now my adrenaline was pumping.  I anxiously looked for an off-ramp that led to civilization and gas stations. First off-ramp I struck oil.  I was so relieved that it didn’t occur to me that I was the only car there — the station was closed and all I had was cash.

I could go on and on and on, much like my sojourn, but suffice it to say I found an open station further down the freeway and paid $4.03 a gallon!

2 1/2 hours later I was home.

Now I’m in a fibro-flare just because of a ride on the freeway filled with more stress than my system could accommodate*

Exhausted, my whole body hurting – The price of gas is much higher than even I thought.*In many, if not most . . .  or all,  chronic conditions the body is chronically in a stress state.  Added stressors, even small ones, throws the system into an even higher stage of red alert and symptoms become elevated.  Kinda like if you’ve had an injury to a joint (body part, that is).  At rest the joint feels fine but if you tax that joint, sometimes even years later, it will hurt.

 

3 EXCELLENT Reasons not to Exercise

My husband is always after me to exercise. In Southern California it’s difficult to use weather as an excuse so I have to use CreativitytotheMAX

1.  Fibromyalgia Brain Fog:

  • “What!? It’s midnight already!? I was just about ready to go for my walk”;
  • “Are you sure? I could swear I exercised today”;
  • “I couldn’t walk today. I locked myself in.”;
  • “What do you mean the doctor stressed exercise?! I could swear she told me not to stress over exercise.”

It’s difficult to keep up with Brain Fog excuses because I forget them.  So I moved on to bigger and better reasons.  My body is always cooperating.

Tallulah PaceHead, my pacemaker

2.  Heart Problems

When I began to get light-headed on my walks and it wasn’t  the heat, lack of food or dehydration. It was my heart arrhythmia. NOW I really had a good reason not to exercise.

It was heart arrhythmia that led to my getting Tullulah, My pacemaker.
The cardiologist said “Absolutely exercise is fine now.

(in case you missed my heart arrhythmia “story” here are the 3 main posts)

Want the ENTIRE saga, including all the PIN-UP pictures of Tallulah?
Type in PACEMAKER at the top of the blog in the SEARCH box!

3.  Foot Problems

My body, bless its little heart (pun intended) continues to cooperate.  These last few months my foot has REALLY hurt.  The doctor says it’s joint inflamation leading to nerve entrapment.
NOW THIS IS AN EXCUSE if I ever had one.  I limped everywhere, grimacing wildly so my husband could make NO mistake that it was too painful to exercise.
He bought me a folding recumbent bike.

Come to think about it, I actually get a lot of exercise running out of reasons.

By the Skin of My Body-Barometer

California is facing the “storm of the century”. Well, perhaps of the decade or maybe the past few years.  I’m afraid that more than 3 drops of rain in Southern California qualify as a “storm”.  The news weathermen/women – or as they refer to themselves, meteorologists – are licking their lips at the prospect that they might be able to cover something other than sunshine and occasional morning fog.  It is supposed to rain for the next 5 days.

Skin Temperature

Did you know our skin is the largest organ of our body!? You may not have thought of your skin as an organ, but rather a covering for your internal organs. Our skin is an organ linking us to and protecting us from the outside world.

Did you know the skin of an adult covers about eighteen square feet and weighs approximately seven pounds! (What a relief to know that I’m actually 7 pounds lighter than I thought I was.)

Skin Temperature Image, Pretty Beautiful!

Now how does the largest organ of my body and the weather forecast relate?

All eighteen square feet of me hurts as the barometric pressure drops as the storm comes closer. I know, I know, medical science has no proof that our bodies, much less our largest organ, are affected by weather.  Medical Scientists should all get dual degrees in medicine and meteorology.

Anyone know of a good Medical Meteorologist?

Great info from Sharon on comments which I think is worth of moving up to the actual post.  Thanks Sharon.

It is  Meteor-logical !

My rheumatologist told me that your body is a closed system, like a barometer, and that any time the barometric pressure changes, your body responds, hence the aches, pains, and other symptoms. If the barometer is steady for awhile, no matter whether it is good or bad weather, then you can cope; it’s the changes that get you. Makes sense to me.


The Difference in Reactions to Fibromyalgia and a Pacemaker

My husband and I were at the store and a woman, a DISCERNING woman, commented on my decorated sling.  My husband said proudly, “She’s wearing a sling because she just had a pacemaker implanted!”  

I know he’s doing everything in his power to make this a positive experience.  This made me reflect on the difference between “getting fibromyalgia” and “getting a pacemaker.
The major differences between people’s reactions:
Having a Pacemaker:
How are you feeling?
Here, let me do that for you”,
“Don’t over exert yourself”
“It’s ok that you are sleeping all the time, your body needs rest to heal.”
“You are going to feel so much better as a result of this”
“Isn’t technology  wonderful!”
“My Uncle (Aunt, friend, Father, co-worker) has had a pacemaker for 59 years”
Having Fibromyalgia:
(“I don’t dare ask how she’s feeling because she’ll tell me”)
“Do as much as you can because it’s not good to be sedentary.”
Have you tried ________ ?(fill in the blank.) 
You look fine.

This was originally posted in 2010.  Not much has changed since then except my heart disease has now taken on the same reactions as to fibromyalgia.  Maybe I’ll go back to wearing a sling.

Pacemaker Activity Guidelines

Before they discharged me last night the nurse read the guidelines, which I had to agree to or they would not let me leave with my pacemaker:

• You should limit use of your arm and shoulder where the pacemaker was placed for the first 1 to 3 months. You should NOT do any heavy pushing, (Read: Be more lenient with my clients) pulling, (no tearing out hair when being more lenient) or raising your arm above your shoulder (do not hit clients you are TRYING to be lenient with) until told otherwise by your cardiologist.

• Do not drive until advised by your cardiologist. This is usually 1 to 4 weeks. (Choice – Take the bus and buy new walking shoes to get to a bus-stop)

• You may do light housework such as (watching your husband . . .) wash dishes and cook. Avoid vacuuming, lifting laundry, overhead cleaning, and activities that require frequent reaching. (Good to know I can continue avoiding all of the above, as usual)

• Ask your cardiologist before doing any sport activities such as golf, bowling, wrestling, hunting, fishing (there goes all my passions) or weight lifting. (there goes my dream of the Ms. World title)

Pacemaker Precautions

• Avoid being near areas with high voltage, magnetic force fields, or radiation because these can cause pacemaker malfunction. (!!! Whaaaaaa?) These areas may include high tension wires, power plants, large industrial magnets and arc welding machines. (There goes my career) Symptoms of pacemaker malfunction are dizziness, lightheadedness or changes in heart rhythm. (Hey!  this is what I got a pacemaker for!) If symptoms occur, back up 10 feet (I thought I wasn’t allowed to drive?) and check your pulse. (Read:  If you have no pulse you don’t need to backup 10 feet)

• Pacemakers inserted today are not affected by microwave ovens. (Yes!  My cooking appliance of choice) Pacemakers have built-in safety mechanisms protecting them from this electrical interference. (Why don’t they have built-in safety mechanisms protecting me from power plants, large industrial magnets and arc welding machines?)

• When you go to an airport, always carry your pacemaker card with you. Because the pacemaker contains metal, it may trigger an airport metal detector. Explain to the airport attendant (Have YOU ever tried to “explain” to an airport attendant anything?) that you have a pacemaker so that special arrangements (read: strip search) can be made for a security check. The metal detector itself will NOT harm the pacemaker. (Read: But the attendant could . . )

• Do not have an MRI (Magnetic Resonance Imaging) test because it can damage your pacemaker. (From now on all diagnostics will be done through exploratory surgery)

Call your cardiologist if you have:

• severe pain at your pacemaker site  (With Fibromyalgia I always have pain at the pacemaker site- long before I had a pacemaker)

• frequent or constant hiccups (Read:  Lay off the beer & peanuts)

• twitching of your abdominal muscles (No sex?)

• shortness of breath  (Yup, no sex)

• dizziness, light-headedness or blackouts (Positively no sex – oh well, what’s sex without beer & peanuts . . .)


Living with God, Aliens and Pain

I was asked to give the keynote address for the 2009 Fibromyalgia Awareness Day at Cal State Fullerton.  I’ve given it many times since.  Here’s an abbreviated version:

I became symptomatic in 1996 when Fibromyalgia was considered a Hysterical Middle Aged Woman’s SYNDROME.  By the time I was diagnosed I met that criteria.  Doctor after doctor with a wink and a knowing pat on my shoulder (at least that was what I perceived) let me know nothing was PHYSICALLY wrong with me.
I decided I was inhabited by Aliens who were using me as a Southern California time-share.  It gave me comfort to find the cause.
Years passed, the Aliens stayed and the pain turned into depression, into exhaustion, into despair.  My body betrayed me, my mind fogged, the medical community  abandoned me,  family & friends were powerless. 
I was both sustained and drained by my psychotherapy practice.
Raised as a non-practicing Jew, whose father and mother were professed agnostics. I now had no faith – in my body, mind or a God. I had nothing to hold onto for comfort much less hope.
I didn’t matter.  Now THAT’S a depressing thought which I suspected was part of the Alien’s plot to render me completely helpless & hopeless in order to take over my time-share real estate.
I didn’t matter.  There was no purpose to my life.  I started making pictures: Ugly pictures, scribbling pictures, angry pictures.  I would paint and paste, scribble and scrawl without any conscious thought. 
Weeks later, months later, in some cases years later I would put words and meanings to my unconscious expression.  That body of work  turned out to be a visual document of my journey with the aliens.
I realized I had been mourning.  Grieving my loss of identity, a loss of purpose. I mourned for that energetic person: The one who worked a 60 hour week and went to school for two Master’s degrees; who jogged 10 miles in 100 degree heat; who saw 8 clients in a row and remembered the details of their lives a year later…

She was dead. I was angry. Now I had to check my appointment book to remind me of my clients’ names. I could work only for 3 hours before I had to take a nap.  Walking around the grocery store was exhausting.  I didn’t want to talk to anyone.  Holding the phone to my ear hurt my arms. Walking burned my feet. I didn’t make commitments other than work because I never knew how I would feel.

Life as I knew it was gone.  What was I?  Who was I?  Why was I here?  If there was a purpose to my having fibromyalgia it could only be an alien plot.

Without any pre-determined intent I drew a picture of my fibromyalgia:  Three eyes, three-tongues and spontaneously titled it “The Soul Slayer

Until that moment I had been focused on my body and mind, never my soul.   Since I’d been searching for the cause and a cure for my fibro for over a decade it was natural to now start searching for my soul.
Where does one look for a soul?  I went to synagogues and churches .  Found wonderful people but no soul – at least not mine.  I read about the world’s religions and searched SOUL on the internet.  I was sure that everyone else had a soul and it was only time that they discovered mine was missing.
Accidentally (maybe not?) I was introduced to a spiritual mentor, no more no less.  He was Baha’i, a faith I was familiar with but about which I knew only some basics.  He asked me to examine my life, my choices, my beliefs.  I had long known from a psychological perspective about my choices and beliefs but now that my mind and body had betrayed me it all rang hollow.
He told me to repeat out loud “Say, all are created by God” and “Thy Name is my healing.” each, 95 times every day. (95 is a sacred number to the Baha’is.)  There was nothing to lose.  Unlike everything else I had tried as a “cure” this Rx didn’t cost me a penny and had no side effects (or so I thought).   
I needed a time and place where my fogged brain would remember to repeat each of these sentences 95 times out loud.
So I started walking and repeating “Say, all are created by God” and “Thy name is my healing.” 95 times.  It took my mind off the pain in my legs & hips and burning feet as I walked.  I started talking to God.
beginnings of Faith – My Servant of God explained to me that ALL souls recognize each other in passing.  I smiled at everyone I passed wherever I went, secretly delighted their souls knew my soul, even if I didn’t.
Exercising, smiling, talking to God!  
I’m not sure I’ve mastered listening to God but suddenly at the ripe old age of 66 I discovered faith. 
Walking, talking and smiling may not be the cure for fibromyalgia but they are damn good medicine (God, forgive me for swearing  – it’s the only way I can underscore my point)  and faith that the Aliens can’t destroy me.  I’m much more than just a convenient timeshare.
My soul  knows.  I can live with that.

“Know thou that the soul of man is exalted above,  and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.”

“Consider the light of the lamp. Though an external object may interfere with its radiance, the light itself continueth to shine with undiminished power. In like manner, every malady afflicting the body of man is an impediment that preventeth the soul from manifesting its inherent might and power. When it leaveth the body, however, it will evince such ascendancy, and reveal such influence as no force on earth can equal. Every pure, every refined and sanctified soul will be endowed with tremendous power, and shall rejoice with exceeding gladness.”

Birth(day) of My Unconscious

My birthday is almost here.   Perhaps because I’m still sniffing, snorting, coughing, moaning & groaning from this cold that’s settled into my bronchial tubes, perhaps because of my fibro,  perhaps because every birthday reminds me of how short a time we spend on this planet I’m a bit down. Didn’t know it . . . until . . .

Since spending most of my days as a psychotherapist focusing on other people’s feelings, feelings, especially my own, are the last thing I want to pay attention to when I’m not working.  But since I’ve been facilitating Therapeutic Process Journaling Workshops I’ve stepped up my own creative journaling.

I keep telling my participants that their unconscious KNOWS what’s happening. Whether you intend it or not, unconscious messages come out in the journal pages.

As I was doing the cover of  a $1.00 notebook the picture of hands on a magazine cover seemed to be the right size and I liked the colors against the black and white notebook.  At least that’s what my conscious mind was focused on:  size & color.

When the cover was done it struck me that I wanted a helping hand.

I wasn’t feeling good physically or emotionally.  I also had been spending all my time at the office or alone with my computer – even neglecting Max and his walks.   I needed to reach out to family, friends.  And Max would add – take leash in hand and take him on walks! The cover left no room for doubt.

All that for $1.00 and glue!  Happy Birthday Judy.

Pain is MESSY

Despite my best efforts not to catch my husband’s cold – it caught me.
Fibromyalgia magnifies pain signals from the body to the brain and the brain to the body.  I hurt all over, as if I had the flu.

I smudged paint all over this free-form poem.  It looks like I feel.

P.S.  Wash your hands after you read this so you don’t “catch” my cold!