It’s the Lupus Share Bear!!

ShareBear#HAWMC Day 4Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

I was going to go with a dragon wielding a sword and a shield, but those kinds of images can get downright gory. 😉

Instead, you get a fluffy purple Care Bear Share Bear!

Because sharing is caring.

Little corny.

Here goes:

So. As an advocate for all things Systemic Lupus Erythematosus, and its related secondary afflictions, such as fibromyalgia, Raynaud’s Phenomenon,  Sjogren’s Syndrome…yadda yadda…I can assure you that the internet is chock full’o’links.

The internet is also like the TARDIS: it’s bigger on the inside.

How to wade through all of that information?!!??

You don’t. You wait for someone like myself who has spent years perusing and narrowing down the field of links that are actually worthy of your time and attention.

It’s like some kind of chronic bandwagon…and it’s TOTALLY okay to jump on it. Believe me, if I could have spent the last two years doing….ANYthing….else, instead of research, I would have.

While most know me as an advocate for Lupus, some also know I like to narrow it down to more national-applicable information.

No, I’m not inept at spelling…I’m Canadian…and we have “u” in our words. True story. 😉

Thus, I’m going to provide links to more Canuck, “in da hood” kind of information…I hope it helps.

Lupus Canada – Working Together to Conquer Lupus

http://www.lupuscanada.org/

You can find provincial information, membership…as well as information on fundraising walks in your area!

Sjögren’s Society of Canada

http://sjogrenscanada.org/

You can find all sorts of information, support, membership and the latest on research.

Canadian Pain Society – PDF on Fibromyalgia

http://www.canadianpainsociety.ca/pdf/Fibromyalgia_Guidelines_2012.pdf

This is an extensive document each and every aspect of Fibromyalgia. Worthwhile to read…everything you hoped you’d never have to know…symptoms, diagnosis, treatments…written by physician’s for physician’s in a context anyone can understand. Also includes “recommendations” and management information.

Scleroderma Society of Canada

http://www.scleroderma.ca/

This is a modest site with information on the various types of scleroderma, including, but certainly not limited to:

Localized Scleroderma

Linear Scleroderma

Morphea

Systemic Scleroderma

Limited Scleroderma
Diffuse Scleroderma
Sine Scleroderma

And a wonderful file on Raynaud’s Phenomenon:

http://www.scleroderma.ca/files/Pamphlets/raynaud2.pdf

Health Canada

http://www.hc-sc.gc.ca/index-eng.php

Seriously? Why?

Because if you’re going to advocate in any way, big or small, lightly or total spewage of any and all things Lupus…you need to stay informed on all levels: New research, recalls, problems, concerns…

What you need to remember is “Whole Body Care.”

Link: Fill in the ___________________________.

Link: Fill in the ___________________________.

Huhn?!?!?

When you totally jack the above links and put them in a file folder on your desktop……

*waits*

………………

………………

You must also find TWO links to include in this list that relate to……….YOU.

Not just “you”….but towards what it is that makes you, “YOU.”

We are *not* our disease(s) or afflictions.

We are human beings with real interests and the need for self-care.

What is yours?

Mine? Scrapbooking. Creative Arts. Steampunk. Anglo-Saxon archaeology. Herbalism. Old English. Pinterest.

*shifty eyes*

I wish for you to include these links in your file because I want it to serve as a reminder that you need to also be taking care of your personal, emotional and spiritual needs.

Whole. Body. Care.

Brought to you by the Lupus Share Bear, &

Your Friendly Neighbourhood Canadian Chronic Badass.

HAWMC_2012_dayprompt-41

2 responses to “It’s the Lupus Share Bear!!

  1. Love this post. Thank you for the FM link. I do admit, I use the pages on FB that you have ‘liked’ to weed out the more useful from the not so useful. I do definitely do my own research, but as you are than aware, it is ridonkulous the stuff you have to sift through to find something truly pertinent, or useful. I respectfully, use your experience, and insight so I don’t tear out my hair, trying to find stuff. 😛 Thank you for that for what I have used, and what you may help me find.

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    The cause of Sjogren’s syndrome remains unknown, but research suggests that it is triggered by a combination of genetic, environmental and possibly hormonal factors. It is believed that some people are more vulnerable to the condition when they are born and that certain events, such as a viral or bacterial infection, can trigger the problems with the immune system.*:,`

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