Invisible Illness – Prayers in search of “Cures”

I’ve written or spoken about my journey with fibromyalgia, the 40+ doctors, tens of thousands of dollars of tests and doctors telling me that nothing was wrong while handing me a psychiatric referral. 

Difference in Reactions to Fibro and Pacemaker

Fibromyalgia: Hysterical Middle-Aged Woman’s Syndrome

This Ted video got my attention.   I hope it gets yours because it’s likely you or someone you know has other invisible disorders such such as fibromyalgia, IBS, migraine, interstitial cystitis, vulvodynia and ME/CFS which affect millions and have been largely ignored by the NIH.

17 minutes

“Jen Brea’s Outrageously Successful Chronic Fatigue Syndrome (ME) TED Talk”

Despite my own struggles, I’ve been blessed with relatively mild symptoms and the ability to lead a fairly high functioning life. Long ago I lost count of all those I know, worse off than me, who have “untreatable” or  invisible illnesses – friends, former clients,  internet blogfriends, children and many who follow my blog  

To all of you who are on similar journeys – – you are in my prayers.  It’s not a cure but it’s all we’ve got . . . for now.

 

 

 

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 .

11796206_835121679964536_7560255879812816373_n

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.

DSCN6311

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 . . .”

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

92db0134526be573f75d3cf4e9645951

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

 

Being tired is exhausting

I look normal, I 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 it: Fibromyalgia, 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.

Judy's Journal, Mixed Media, Collage

judy’s Journal, Collage

No one knows what causes it or how to make it better.  Looking back, I think I’ve had it my whole life.  But I’m lucky because it didn’t become full-blown until I was an adult.  For teens and young adults it’s really hard. Read this article by teens and 10 things they want the public to know.   Teens who live with chronic illness and the 10 things they want you to know.

I’ve blogged about it before:

The Mask of Invisibility and me

Fibromyalgia, Dx: Hysterical Middle-Aged Woman’s Syndrome

I prefer not to talk about it, write about it, dwell on it.  It is what it is and I’m blessed that it’s not life threatening.  But today is World Awareness Day for neuro-immune illnesses of ME/Chronic Fatigue (CFS), Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). It’s an opportunity to raise public awareness of these conditions that impact millions all over the world.

It’s a good bet that you or someone you know has one of these invisible conditions . . . if you didn’t before, you do now.