Friday, May 12, 2006

Celebrating (of a sort)

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PSHunt


Grab the Scavenger Hunt code.

Photo Theme. Join the blogroll. Visit participants.





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Today's topic is celebrating.

Well, I'm taking adding my own little twist here, because what I'll be celebrating this weekend is National CFIDS Awareness Day. (Technically, it was May 12th, yesterday, but today's the day I get the most traffic here, and I'd love to use it as best I can.)

CFIDS = Chronic Fatigue & Immune Dysfunction Syndrome.
People who suffer from CFIDS also have higher rates of
Fibromyalgia. Since there is a high rate of co-morbidity, May 12th (smack dab in the middle of National Arthritis Awareness Month) also happens to be Fibromyalgia Awareness Day.

Fibromyalgia & CFIDS are life altering, debilitating illnesses.
For which, there are no known causes or cures.
Treatments are varied and limited to management of disease symptoms, not the underlying issues.
Theories abound,
funding is minimal,
and the patients who suffer from these diseases are often misdiagnosed.

Public support for these illnesses - both because there is little known about them (at one time, CFIDS was dubbed "the Yuppie Flu;") and because of their belittling names (go here for a discussion on how much of a misnomer "fatigue" really is) has varied - although, as research continues to show a biological basis for the illnesses, the medical community, the media and the public seem to FINALLY be catching on to the horror of living with these diseases.

At the end of this post, I'm going to be full of link-y goodness for you to check out, so that, if you so wish, you can learn a lot more about CFIDS/ME. I hope you check some of them out.

But, since we're looking for pictures, here are some of the best CFIDS &/or FM related pictures I've found on the web:

These t-shirts are produced by various individuals and illness related groups,



& are all available for purchase from cafe press.


I hope they can give you some idea of what these diseases are like





And why it's so important



that we fund





& find



a cure

NOW.


A big thank you to all of those who've supported me during my battle with these dreadful illness: 12 years into this mess, and I wouldn't have made it a day without all of you. (Including my new blogging friends, who've been more supportive than I could've expected!)

And a special Mother's Day thanks to my mom. For more than I could ever say. (Now, if only she knew I had a blog...)
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Here's the link-y goodness I promised you:

Learning to Live With CFS: We Are Here, We Are Here! *

Laura Hillenbrand, author of Seabiscut, discusses her initial fall into illness

Autumn, a fabulous blogger, does her usual fabulous job of connecting the dots over on perfection on a curve. How many degrees away are you?

A good a reason as any for cake, right?

Support groups I've found helpful include But You Don't
Look Sick & SleepyDust.org

For More Information Check Out:

Co-Cure

The CFIDS Association

The International CFS Association

The Fibromyalgia Network

& The National Fibromyalgia Association.

15 comments:

Loni said...

Very good post. I have lupus, another autoimmune disease, that correlates with yours. Thank you for sharing this - well written.

My Sat. photo is up too!

mar said...

Very informative post, thank you. I know a couple of people who suffer from fibromyalgia and I am perplex that there are too many around the world. There is need for awareness, I will check out your links.
My photo hunt is posted! Happy saturday!

Viamarie said...

This is a very good way of increasing public awareness. Perfect choice for this week's theme.

My photo is up too!

Viamarie said...

This is a very good way of increasing public awareness. Perfect choice for this week's theme.

My photo is up too!

Tricia said...

Great post, very educational.

Wystful1 said...

And what a terrific idea!!

My S P H is up

Strong Enough said...

Very good post. Thanks for making me aware. HUGS to you!

Chi said...

This is a very informative post...thank you for sharing it & making me more aware of what fibromyalgia is.

Caroline said...

Thanks for sharing all this info with us. A perfect post for this week's theme.

Mine is up.

Melli said...

That IS a unique twist on the theme - but it works! Lots of good info here! Thanks for sharing it!

TNChick said...

I agree this is a great way to increase awareness.

Mom Nancy said...

Interesting twist on the theme. I have several friends with this condition and I know that they suffer. Good cause!

Thanks for visiting my picture!

Lifecruiser said...

Very informative, kind of celebration of a good cause, to spread information :-)

Carmen said...

Not only a good way to celebrate, but educational also. :)

GoofyJ said...

Great post! my photo is up. :)