Tuesday, 21 August 2012

Speaking Out & Wanting To Be Heard !

At the moment I am totally exhausted, have my usual headache and ache all over.  The beauty of all of this is knowing I am not alone ... and what a great feeling that is.  Now to get all the people who don't understand what it is all about to understand would be nothing short of a Miracle.

Going ahead with my day by leaving home at 8:40 this morning to pickup up two of my favorite people, BJ and Andrea, who I volunteer along with at the Wiarton VON SMART classes.  We headed on over to the Plex at Saugeen Shores to attend a VON Workshop Refresher Course from 9:00 am until 3:00 pm.

"Here are our two VON Grey~Bruce SMART Coordinators, Jessica Doerr, and longtime SMART Guru, Dorothy Embacher."

"All in attendance had been divided into three groups .... "

"As Jessica and Dorothy had a little SMART Jeopardy Quiz in way of a bit of competition all planned out for us.  There was lots of laughs and fun with this by all."

Once the Blue Bird team won ... I really think the team I was on could of won, but I am sure Dorothy ignored us as she really had some favorites over on the other two teams .... LOL.  Right after Jeopardy we had Leslie McAdam, CCAA Trainer present to us a Cardio Update.

"I thought Leslie to be not only a lovely person, but also a fantastic speaker who was very interesting to listen to."

I really think my thoughts on Leslie might have changed a bit once she became the "Task Master" of Cardio by putting us all through the motions ....

"Working hard, sweating and groaning by using muscles which hadn't been out and about for sometime wasn't easy, especially when our "Task Master" had barely a sweat going on along with a huge smile on her face."

LOL...on a serious note, it was quite the work out as we all sweat it out for how long?  OMG, I never timed it but it seemed like hours !!!  This is a bit of what it was like for us HERE.  Thanks Leslie, I would not hesitate to try out another Cardio Workout session with you again !

Just before lunch our SMART Guru, Dorothy, gathered us all together as she had a SMART Certification to award to a brand new SMARTIE, Sally.

"With much searching and calling out of Sally's name, alas Sally was not to be found anywhere.  Another Certification to be sent via Post maybe?"

"Hooray !!!  Sally had been making a phone call elsewhere, having had returned to us with her Certificate presented to her personally by Dorothy and Jessica.  Congratulations to SMARTIE Sally !"

Lunch was totally yummy, consisting of a Salad Bar, with an assortment of juices and teas for beverages.  For dessert?  An ice cream sandwich bar !  There went all my "will power" again, out the window in short order, but it was really good and I did do at least a two hour of Cardio exercise you know.

The afternoon we were having Dr. Kevin White, MD PhD speak to us on Fibromyalgia.  I had the pleasure of speaking to Dr. White in person by telephone last November, so I was thrilled I would be meeting him in person.  Dr. White even took the time while we were having lunch to go from table to table to personally introduce himself.  Nice touch, Doc !

"Here Dr. White is getting his presentation all set up and ready to go."

"Dr. White's presentation was thoroughly enlightening to all of us in attendance totally captivating us all on the topic of Fibromyalgia.  Fibromyalgia  has been grossly misunderstood and/or totally disregarded for many past Years.  Dr. White is a believer and extremely active advocate on behalf of Fibromyalgia, even speaking on the subject to Foreign Countries, as well as having wrote the book, "Breaking Thru the "Fibro" Fog"."

I believe the more people who are made aware of Fibromyalgia, better the understanding, more importantly beginning out there with the Medical World.  Without people like Dr. White, myself, organizations, such as VON, and others speaking out, people will remain in further ignorance on the topic with Fibro suffers left feeling trapped within their own pain.  These are solely my opinions on this topic and not quoted from anywhere or anyone else.

I was very passionate last November when I blogged "By Definition ~ The Silent Pain Behind The Smiles", followed by, "More Learning & A Bruce County Mini Adventure".

I am personally not only passionate, but very emotional as well, especially when it comes to being frustrated when trying to explain to people how you feel only to have them totally disregard what you are saying, or look at you like you possess two heads .... frustrating, depressing and leaving me feeling further inadequate with the turn my life took 4 years ago.

What benefits do I gain from feeling chronic pain on a daily basis?  none whatever that has gained me wealth, riches, health and/or understanding and compassion but by a few.  For those who do lend me compassion and understanding, I am truly grateful for this .... we are so quick to judge others when we have yet to walk in another shoes, are we not?

Most recently, I spent three of my days last week, with a few weeks prior, in bed or barely able to get myself from bed ... people might drop by with me finding myself apologizing for our home not being "just so", as at one time I used to have it "just so".  It is a daily battle some days.

There is light within the tunnel  by having a loving, understanding husband (most every day by my side), close family members and friends who do support me, regardless of my surroundings, and the knowledge within of knowing I am not alone in this State of Chronic Pain, with people like Dr. White "putting it out there" for all the World to see.

"Speaking Out & Wanting To Be Heard" !  A HUGE thank you to all those people.

What am I going to do the rest of my evening, now this day is almost at an end?  

"Curl up with the brand new Fall "What's Cooking" mag that arrived in today's mail, is exactly what I am going to be doing.  I can't wait !"

"I even got a brand new VON SMART "T", as did every other SMARTIE who was in attendance today.  Loving the new "V-Neck" style."

Oh man, how could I ever forget all the loving I get from all four of our "Checkerboard Aussies"; I am so dang, dang, triple dang tired I almost forgot them.  Speaking of which I best be finishing up here soon so they can get out for their last jaunt of the day before I myself call it a day here, "Just North of Wiarton & South of the Checkerboard".


  1. While I don't have fibro I do understand your problem with having a condition people don't see or understand. Being a brain injured lady myself it can be a struggle at times, people look at me like I have lost my mind when I tell them what it feels like and why I can't go, there or wherever with them, why I can't eat all the same foods that they do. Hugs to you and keep on being you sweet sassy self!!

  2. Having had fibro for over 30 years, I can fully understand where you are coming from and feel your pain.
    I have found that the best medicine for the pain is activity, every day, so you are doing the right thing with the cardio.
    Count the blessings of those Checkerboard Aussies, who get you out and about several times a day and you have that condition by the neck!!!'
    Keep up the good work - this isn't a dress rehersal and it's the best hand we have drawn, so on-ward and upward, good show!!!

  3. I'm so sorry that you have chronic pain, and although my experience is not similar, I do understand having a 'silent' illness - one that people can't see or understand - it can be very frustrating and lonely! I think it's great that you are out there learning everything you can about Fibromyalgia (and spreading the word)! BEST, best of luck to you!

  4. I am so sorry for your battle with Fibro- I have Sjogren's syndrome myself( an autoimmune illness much like Lupus that includes muscle/joint pain and organ damage) and truly understand that 3/4 of the weight of invisible illnesses is being fully supported or understood!!I was the go-to lady, the energizer bunny of activities and boundless resources. And then I got sick. Most people understand for a week or two but just faze out when you still " haven't shaken it off" after a month.the only people who really " get it" are others who struggle daily with the unpredictable nature of these diseases.
    Keep moving! it sure helps me be the best I possibly can be!


How nice of you to drop around to have a wee visit with me to see what I have been up to from time to time. I look forward to your comments as they add much brightness to my each and every day to know there are such wonderful people out there.

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