Friday, February 25, 2011

15 Things Not To Say to Someone With RA....

....or any other auto immune rheumatic disease for that matter..... I saw this article forwarded to me on FB,,20468155,00.html
and it has some great ones listed here.  As I have had my MCTD since age 9, I have heard 90% of every bad ignorant and just plain STUPID thing there is to hear.  What are some of your least favorite things to hear?  What are some things youd LIKE to hear instead?  Lets make a list and maybe together we can help bring a little more awareness as well! 

Wear That You Care - February 28th

For many of us with Rheumatic Diseases, we have Rare Auto-Immune Diseases - So be sure wherever you are on February 28th to show your support of not only your fellow Rheumatic Disease friends/family but also all the other millions of people out there who also suffer from Rare diseases, like ours, that have no cure.  Be sure to go to the website and also cross-post this! Please also be sure to share your photos from your own Wear that You Care day! I'll be sure to share them here! Lets see how many photos we can collect and show our support for eachother and also all the others out there with other rare diseases as well! 

I was 9 years old when I was diagnosed with MCTD - and I was one of 12 kids in Canada and one of 50 in North America with my disease.  I know first hand how MUCH this support TRUELY MEANS to all of us! Please be sure to share this, and participate in this and show your support and ask others to also do the same!

Thursday, February 17, 2011

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 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!

Tuesday, February 8, 2011

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? 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!