Posted in Books, Cats, Fibromyalgia, Movies, Televison, Uncategorized

Next Time, You Bring The Cookies

1fibro5My brain is often at war with my body.
I want to do more. More! More! Yes, on days like this my brain sounds like a strange combination of yearning romance novel heroine and petulant child.
Such is the hidden world of Fibromyalgia.

My body dragged itself out of bed to start another day. Not really sure why I have a bed sometimes, but at least it’s there for rest and decoration. I also once again failed to get the license number of the Mack Truck that hit me while I was sleeping.
With FMS another day means more pain, fatigue, frustration, disappointment, doubters and just more of less.

I don’t expect anyone who doesn’t live with Fibromyalgia to understand it. I don’t have cancer, that doesn’t mean I can’t have empathy and understanding for those that do. Or ALS, MS, CP, Diabetes, Autism, depression, heart disease, stroke, Alzheimer’s, etc.
Doesn’t mean I can’t understand a man because I’m not a man.
Or the rich because I’m not rich.
As human beings we have a wealth of empathy, understanding, and compassion available to us at any time.

I get some people think Fibromyalgia is made up by lazy or unmotivated people. Ok, why do doctors and other professionals go along with it, what’s in it for them? They have more than enough patients, unfortunately cancer alone keeps them pretty busy.

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1sm27So it hasn’t been my day, my week, my month, or even my year, but I do know that laughter is truly the best medicine so I thought today was a good day to review Conversations with Steve Martin edited by Robert E. Kapsis (University Press of Mississippi). Thank you Netgalley.com for letting me borrow this ARC copy, available in stores early September 2014.

I’ve already had many conversations with Mr. Martin in the last 35 years – usually he’s wearing an arrow through his head or bunny ears, or a balloon hat, playing his banjo, getting Happy Feet, dressed in a King Tut outfit, and/or eating tiny chocolate cookies while juggling small cats. No cats were harmed in my fantasy conversations with Steve Martin.

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Conversations with Steve Martin highlights Martin‘s contributions not only as a comedian, but as a writer, musician, artist, and free-thinker through a series of interviews and profiles. It’s sort of a living eulogy of Martin’s rollercoaster career over the past 4 decades.

Steve Martin has thrilled and disappointed audiences for decades with his ever-changing style, from eccentric, incongruous, and wacky to mature to sinister to bizarre to mellow.

As much as I’ve 1sm20enjoyed some of his later work, I sometimes miss the wild and crazy guy, the Cruel Shoes, King Tut, Dead Men Don’t Wear Plaid, The Jerk, The Man With Two Brains https://yadadarcyyada.com/2013/11/27/the-man-with-two-brains/ and more.
That being said, I’m so glad he moved on and didn’t get stuck.

If you’re a Steve Martin fan this latest book is ubercool, if you’re not, well, excuuuuuuuse me!

You can read, watch or have pretend conversations with Steve Martin or maybe really pretend 140 characters or less magical moments on Twitter @SteveMartinToGo

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Carl Reiner may have said it best, “His strength, as an actor, I’ve found, is his beautiful body,” Carl Reiner said jokingly. “His weakness is too much hair on his body.”

Laughter may not fix all the world’s problems, but it sure does know how to make them seem less dire.

I think tonight will be a Steve Martin movie night.

Thank you Mr. Martin for another lovely conversation, next time, you bring the cookies.

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Posted in Family, Parenting, Uncategorized

Building Decks With Dad

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It’s not as though me and my Dad built decks for a living or built lots of decks together.

We built one deck together. It took us a few days. And by us I mean mostly my Dad.

Up front, I’m not sure whether I was more of a help or hindrance.

I recall smashing my thumb with a hammer. Dad said, more or less, “Great, your Mom is going to kill me”, with a laugh. It was a family joke. She understood. I had suffered many injuries in the care of everyone, as well as those that happened while with friends, in school, alone. I was known as clumsy. Turns out I actually had: Epilepsy, Fibromyalgia, and Hypermobile Joint Syndrome. It’s very possible I’m also clumsy.

Why was I at the camp (some call them cottages or summer home, in Northern Ontario, they’re called camps) helping my Dad with the deck? I seemed an unlikely choice, but my older brother who was actually helpful in building situations was away at university and everyone else was working. My Dad was on vacation and we needed a deck at the camp.

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We’d work during the day and in the evening we’d have supper then ice cream, watch TV, I’d read to my Dad, or we’d both read to ourselves…and we’d talk.

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You may have noticed I refer to my father as Dad, never my father because he’s a Dad, always. Funny, smart, sweet, sometimes annoying, sometimes really annoying, kind, and fun. He loved friends and family, cars, talking about cars, looking at cars, fixing cars, driving cars, watching cars, taking pictures of cars and with cars, also, cats, beer, eating, TV, movies, working, laughing, dancing; he was a gentleman and a gentle man, hopelessly silly…and always a Dad to me and my brother.scan0010

There’s never a picture of him where that mischievous twinkle isn’t in his eye except when he had dark sunglasses on, but we know the twinkle’s still there.

I’m not sure we were always aware of how lucky we were to have a Mom & Dad, not just a Mother & Father. We did always know we were loved. Of course, look at us, we were adorable. I love my Mom & Dad today and every day.

I have lived at least six or seven lifetimes in the past 30 or so years since those days at the camp. I wish my memory was perfect or more robust, but the happiness I felt in that time has never faded in my heart.

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Enjoy the times you have because you never know until later those times were actually treasures.

Happy Dad’s Day to all those men who care enough to be Dads, not just fathers!

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Posted in Autism, Fibromyalgia, sleep, Uncategorized

Is Fibromyalgia Just Another Word For Lazy?

You’re lazy. You’re a whiner. You’re attention seeking. It’s all in your head.  Fibromyalgia is just another word for lazy. Feel free to add more. I’ve heard them all. Image

Let me get this straight, the medical profession conspired and effectively implemented a fake syndrome just to cater to lazy people. Sounds perfectly reasonable. It’s not as if doctors have anything better to do. Or have reputations and licenses to protect. Or have ethics. And what exactly would their motivation be? Why would they make up an illness? Aren’t there enough illnesses? Cancer alone should keep them hopping.

There are many health issues that can not be found through standardized testing, for example: Multiple Sclerosis, ALS, Cerebral Palsy, Parkinson’s, Autism, Lupus, ADD/ADHD, wheat or gluten ‘sensitivity’, acute back pain, as well as many mental health issues.

Does that mean they don’t exist? Does that mean the people that have these issues don’t suffer, don’t feel, don’t actually have these medical challenges? Image

People like to mock. I get that. I’d guess those same people would want doctors and people to believe them if they were ill, even if there was no standardized testing for their illness.

To the best of my knowledge, there’s no standardized testing for ignorance or stupidity yet either, but I’d buy stocks for that future booming business.

I didn’t ask to be ill and I certainly didn’t ask to be mocked and harassed because I’m ill. Even if it was just ‘in my head’, shouldn’t anyone with a health issue be treated with dignity and respect?

Maybe we need a standardized test for intolerance.

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Posted in Autism, Fibromyalgia, Uncategorized

Fibromyalgia is a Four Letter Word

This isn’t a whiny post (at least I’ll try, no promises), or a ‘it can be fixed blog’, or whatever. Just a few thoughts about why people think Fibromyalgia isn’t a real syndrome, that it’s just lazy, unmotivated people and mostly, why I don’t have all the answers.

 

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Let’s begin at the end, I don’t have all the answers because I don’t sleep enough.  Also, I’m not a million years old.  In addition, I’m certainly not a super genius.  Oh, did I mention I don’t sleep enough?

People prefer to think people with disorders such as Fibromyalgia are lazy because they don’t want to accept that you could wake up one morning and have something like that or Chronic Fatigue Syndrome or Lyme Disease and so on.

Instead of doing the whole there-but-for-the-grace-of-God-go-I thing, many people just decide that people with these illnesses could do better if they just got up and did something, or they just aren’t motivated, or they’re lazy, or they’re not trying.

It’s easier to believe that than believe someone who was full of energy and often an A Type Personality can suddenly be fatigued, full of pain, insomnia, frustrated, sad, have massive struggles to function, and so on.

fhfif4Therefore, Fibro becomes a joke, a stain, a dirty word because otherwise people would have to accept the reality that people get sick.  They get chronic illnesses, they get terminal illnesses, and they live a life of agony and sometimes, they die.

It’s people saying someone with cancer should fight the cancer as though that will fix everything.  I wonder if people ever thought of how that makes people feel when you’ve lost a loved one to cancer?  Oh, so my loved one just didn’t fight hard enough, well, thanks, that makes me feel so much better.

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The same goes for those who’ve lost a loved one to suicide. I’m sure they feel horrible enough without others implying their loved ones gave up, chose to leave, or just didn’t fight hard enough.  Yes, poking a toothpick at a dragon works so well.

I don’t live in someones head so I can’t say if they tried, if they fought, or if they chose, but neither does anyone else so why are so many people qualified to make these judgmental statements?

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Instead of mocking someone with an illness, try having empathy for him or her.  I’m sure there are some pitiable individuals who would prefer to be ill than well, but come on, does anyone seriously believe that’s a majority?  Most people would choose to be well. 

Most people would choose to have a full life, a life free of pain.  Most people would choose to beat cancer. Hell, most people would choose not to get cancer at all.  Most people would choose not to have a mental illness.  If there was a choice involved.

People are finally coming around to the belief that people who lead a homosexual lifestyle didn’t chose to be that way, it’s just the way they are. It has taken a long time and there are still haters out there, but I bet so many people are happy to see a light at the end of that rainbow.

asgoodas5I wonder when that day will come for people with chronic illnesses like Fibromyalgia, or people with mental health issues, or people with Autism, etc.  I wonder if or when people will see them, really see them, for who they really are:  your Mom, your child, your sister, your friend, your co-worker, your Dad, your teacher, your brother, your minister, your neighbour – just people.

Don’t judge people.

Have a little empathy.

Those people might be interesting, or fun, or brilliant, a hope for the future, a good friend, but you’d never know because you made assumptions.

Don’t miss out.