Spoons & Things.....

I know many people are curious, not only about the spoon theory but also why there are alot of spoons showing up in peoples profiles right now....so here is the answer to your question for those who are curious....
Why Are There Spoons On Facebook & Twitter?

I hope to see in all my friends & families facebook & twitter accounts, spoons showing support of all of us "spoonies" out here struggling in silence.

Remember February 28th is also World Rare Disease Day and as someone who has fought a Rare Chronic Invisible Disease since age 9; I hope to see A LOT of support being shown for all of us who are in this boat together, no matter what the disease is.

For those who forgot what the spoon theory is you can find it HERE
I hope everyone remembers to share it and even if you are blessed with being perfectly healthy, take the time to read it in honor of some of us who arent, so you can better understand what we go through every moment of every single day.

In other news I also whipped up two new storyboard style photos I'd like to share, to remind others, of a few Rheumatic Disease facts.....It is not "an old persons disease".  Rheumatic diseases affect MORE canadians than HEART DISEASE, DIABETES or CANCER.  1 out of 6 adults has a rheumatic disease --- 3 out of 5 of those adults are under age 65.  There are OVER 100 Different types of Rheumatic Diseases.  Most GP's do not even get ANY training in rheumatic diseases so often times it takes way too long to become diagnosed.  1 in 1000 CHILDREN has a rheumatic disease. THESE are the faces of Rheumatic Diseases.  It is NOT an old persons disease!

Wishing everyone many gentle hugs & extra spoons!

The Spoon Theory - A Must Read

For years I have tried to explain to others what living with my disease is like.  It is a rare chronic invisible disease so that is difficult.  What compounds it even more is, as I have MCTD (mixed connective tissue disease) is that it contains 6 rheumatic diseases in that one name:  Vasculitis, Polymyositis, SLE (Lupus), Sjogrens Syndrom, Raynauds Syndrom and Rheumatoid Arthritis.  The only word people recognize is .... Arthritis.  Instantly immages of their grandparents creep up and suddenly I'm someone who whines because isn't all that Arthritis is is just a few minor aches and pains?  It frusterates me to no end.  Whats worse are the suggestions.  Have you tried this or that new miracle cure all? Um....you did understand its chronic right?  So anyhow, most people, even those close to me who have been in doctors appointments or read texts about my diseases, never truely understood what I was going through, what I DO go through every single solitary day.  And have since I was 9 years old. 
It is hard to explain as a child, young adult or even as an adult now in my 30's why I just cannot do some simple tasks or why I cant go out to a night of karaoke even though I would love nothing more.  It is something very difficult to put into words for those who dont have a disease like this to understand. 
Then I found this amazing article on....The Spoon Theory (you can read the article here and I highly recommend you do before reading further.....The Spoon Theory )

When I read this I almost cried tears of joy.  I know exactly how she felt trying to explain.  Ive been there.  Her explication of this life we live, this battle we fight, makes it so easy for others to understand.  I have been known for "running out of spoons" and writing IOUs for many spoons for copious amounts of time on end until my body just shuts down entirely and I end up in hospital.....again....or on bed rest....for another few weeks....again..... I am single so its even harder for me not to run out of spoons.  I have no one to share the daily workload with.  Some days I have one or two extra spoons, but most the time by the time I curl up to sleep I have none left.  I've learned, like the author of this amazing analogy, to try as often as I can to carry extra spoons when I can and to plan meticulously every day what I have enough energy to do.  Some call that being anal retentive, but without it you run out of spoons before lunchtime.  And it doesnt help that the number of spoons changes by day and little things like weather or a fever can affect how quickly you can go through those spoons doing such simple tasks.  I hope everyone reads and shares this article, especially if you know someone who has a rheumatic disease, or if you have one yourself, it helps you to be able to exlpain your world a little bit easier. 

Wishing you all extra spoons in all your endevors and many gentle hugs!

Happy 2011 Everyone!

Well, 2011 is finally here at last and I want to firstly thank all of you who take the time to stop in and read my blog!  Secondly I want to say I wish you all a low pain - pain free year and I hope that maybe this year, they will finally come closer to finding us all a cure.  

The holidays have been stressful and chaotic for sure!  Its been hard trying to keep up both with the puppies, opening my new photography business & of course attending functions as well.  Thankfully I also am able to get a bit of rest now and things will be resuming to their normal pace after today.  In mid-Dec. I got my new Rebel camera for my photography business and went out to take some photos here in Medicine Hat.  One of my favorite places to go is to Vetrans Park.  As I was editing some of these photos I took, I pondered why it is I love taking photos of these trees, even when they are barren in mid-winter.  I finally figured out, it was because they remind me of myself.  Their long limbs may be gnarled, twisted and tangled but yet they remain strong and noble looking and full of character.  And during the other 3 seasons of the year, they are beautiful, breath-taking, and vibrant and full of life.  So keep these beautiful trees in mind the next time you feel as barren and gnarled as these magnificent trees, remember that come spring, summer & fall, they are colorful, vibrant & full of life; just as we all are on our good days.  Wishing you all a magnificent new year!

Winter Time

Summer Time

Autumn

Merry Christmas Everyone!

I just wanted to take the time to quickly wish you all a very Merry Christmas and a Happy New Year too!
May 2011 be a time of much joy, dreams coming true, and a less-pain filled year than this one! Sending many gentle hugs and happy wishes to all of you my Rheumatic Disease Friends!  See you in 2011!

First Post

Okay everyone, this is my first of many many posts no doubt on this new blog of mine and I am very excited!
This is a place for anyone with any rheumatic disease or thier families to vent, share, learn and more!  I will try to not only just blog my own battle that I've been fighting now for over a quarter century; but also share new information and such as time goes on; and probably even vent a time or three. 

About me?  I've had Mixed Connective Tissue Disease since I was 9 years old.  I have Sjogrens Syndrome; Vasculitis; Polymyositis, Rheumatoid Arthritis, Lupus and Raynauds Syndrome.  I'm single and live with my two cats; Poly-ana & Lisa-Lee.  I am currently on medical leave; however, I do help my friend Patti with her French Bulldogs as I'm able to; as well as am starting into my own photography & graphic design business.  I currently reside in Medicine Hat, Alberta, Canada although I am originally from the Pacific Northwest. 

I look forward to hearing from you all soon! Be on the lookout for more posts in the future!! Gentle Hugs to All~