Wednesday, September 30, 2009

New Anthem for Autoimmune Disease: Rob Thomas' "Her Diamonds"

Great article: "Rob Thomas' "Her Diamonds" New Anthem for Autoimmune Disease", by Lucinda Gunnin on Associated Content.

I've just realized that people who subscribe to my blog posts via email may not be getting the video feed that's on the blog in their email, and for that reason I should be including actual links to the original video. My apologies, and here are the links to the two video feeds from my last post, also about this song:

The video, via MTV
(smaller version on Rob Thomas TV on Atlantic Records site, if your computer is having trouble loading the one on MTV)

The lyrics, via YouTube

Acoustic version - my favorite, but I think the video is excellent too.

I love this song. Can you tell?

I also LOVED "Smooth" by Carlos Santana with Rob Thomas; that was my first clue as to how cool Rob Thomas is. Yes, that's Thomas' wife, Marisol Madonado, in the video. You know, the HOT one.

It's just like the ocean
Under the moon
That's the same as the emotion
That I get from you...

painting by Mark Godwin

Tuesday, September 29, 2009

Marisol Maldonado "comes out" of the autoimmune closet with husband Rob Thomas' hit song & video "Her Diamonds" - check it out; it's way cool

Watch the music video

I think Marisol Maldonado has taken a very brave step, career-wise, to come out like this about her autoimmune disease. Being a model is a very physical profession and as those of us with ICI know, coming out at work, any kind of work, is a big deal. I'd like to send her a really big thank you for raising awareness of autoimmune disease in general.

I wonder what the song/video title means? Her Diamonds.

And she says ooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
'Cause I can't help her now

Losing her sparkle? Here's what Rob Thomas says about it:
The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that. There are moments where I think I flirted with a thinner personal line than I’ve ever done before, but, really, I’m writing a song about how people deal with hard times, and that hard time is universal, that hard time can be anything."

Singer Rob Thomas and his wife Marisol Maldonado-Thomas attend day one of the 2009 U.S. Open at the Billie Jean King National Tennis Center on August 31, 2009 in the Flushing neighborhood of the Queens borough of New York City.
(August 30, 2009 - Photo by Mike Stobe/Getty Images North America)

From Wikipedia:

Marisol Maldonado is a Puerto Rican American model and is married to Rob Thomas (lead singer of Matchbox Twenty). She is a native of Queens, New York City, and her parents are of Puerto Rican descent. She met her future husband while vacationing with her friends in Montreal in May 1998.[1]

Maldonado is the stepmother to Thomas' son from a previous relationship, Maison Avery Williams (b. July 10, 1998).

She appeared in the music video Smooth, a collaboration between Thomas and Santana, as well as Thomas' video for Ever the Same and his DVD supplement to the CD ...Something To Be in a documentary photo shoot clip at Mark Seliger's studio.[citation needed]

She and Thomas were married on October 2, 1999.[2]

Maldonado suffers from a rare autoimmune disorder similar to lupus erythematosus.[3] The song "Her Diamonds," which was the lead single from her husband's second solo studio album Cradlesong, is about her battle with the disease.[4]

The Album:

The single:

Monday, September 14, 2009

Disability vs. Chronicity: Bloggers Unite for National ICI Awareness Week

I'm writing today as part of Bloggers Unite, which is an off shoot of BlogCatalog. Bloggers Unite is an attempt to harness the power of the blogosphere to make the world a better place. By asking bloggers to write about a particular subject on a particular day, a single voice can be joined with thousands to help make a difference in raising awareness of a particular issue, in our case, ICI.

I've chosen to write about chronicity vs. disability because it's an idea that's been rattling around in my head for a few years now. Laurie Edwards, of A Chronic Dose wrote a similar post recently, titled Illness vs. Disability. In it she says "people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness." This is an important distinction. Her post goes further into the semantics of the situation, and she promises we'll hear more from her about it.

The basic premise of this blog post is that our current definition of disability does not include chronic illness and pain, and it should!

First, here's my take on the semantics. I decided to title my post "Chronicity vs. Disability" because of the work of Jennifer Jaff of Advocacy for Patients with Chronic Illness, Inc., on The Chronicity Project.

From The Chronicity Project:

... The Chronicity Project has two main goals: to redefine the definition of "disability" to include chronic illness; and to ensure that public policy debates about health care and health care finance reform include the voices of patients with chronic diseases.

When the disability rights community did the incredible work they did to arrive at the Americans with Disabilities Act (ADA), they and Congress were thinking about people in wheelchairs and other visible disabilities. However, we know that the ADA was not designed to help patients with chronic illness who need flexible work hours, work at home, and other accommodations that affect our presence in the workplace. In fact, the courts have interpreted the ADA to provide NO protection from termination of employment due to absence from the workplace. This must change if the needs of patients with chronic illnesses are to be met.

Second, The Chronicity Project is committed to participating in the public debate over health care and health care financing reform. Since patients with chronic diseases have more interaction with the health care system than any other group of people, if there is to be meaningful health care reform, patients with chronic illnesses must have a place at the table. Right now, that is not happening. Advocacy for Patients has created The Chronicity Project as our public policy arm so that we can put out the word that patients with chronic illness have specialized needs that must be met in order for meaningful health care reform efforts to succeed.

Jennifer is a lawyer, and off topic for this post, I can say from personal experience that she does most excellent work on all kinds of CI issues, free of charge. Advocacy for Patients with CI, Inc. does take and need donations, though!

Back to the topic. Jennifer got me thinking about the term "chronicity." Turns out she didn't just make it up.

From the Free Dictionary:

  1. Of long duration; continuing: chronic money problems.
  2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases: chronic colitis.
  3. Subject to a habit or pattern of behavior for a long time: a chronic liar.

[French chronique, from Latin chronicus, from Greek khronikos, of time, from khronos, time.]
chron'i·cal·ly adv., chro·nic'i·ty (krŏ-nĭs'ĭ-tē) n.

Chronicity is also a medical term. From Medicine.net:

Chronicity: Characterized by long duration. The state of being chronic.

Y'all know I like to use images in my blog posts, but I had a very hard time finding any to go with this post. When I did an image search on the word "disability" it resulted in many images of visible disabilities, most of which had to do with wheel chairs. No big surprise there. I also wasn't too surprised that I couldn't seem to find ANY images when searching on the term "chronic illness."*

Granted, it's hard to capture an image of something like CI that's not readily apparent, but it's obviously not impossible. Just take a look at PainExhibit.com.

CP III - Trapped In Hell
plaster with rebar
13 inches long x 5 inches wide x 4 inches deep

*Note: I WAS surprised to find MANY images in my "chronic illness" image search of the "Chronic" variety of "ganja", or marijuana; apparently one of the most commercial varieties of seeds available on the market. Who knew?

The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those who are in the shadows of life, the sick, the needy and the handicapped.

- Hubert H. Humphrey

plaster with steel blades
10 inches long x 4 inches wide x 3 inches deep

Images used with the permission of the artist and creator/project manager of PAIN Exhibit, Mark R. Cullen.

Friday, September 11, 2009

Think your cosmetics are safe? Watch this video and think again.

Video by Campaign for Safe Cosmetics

And we wonder why there are so many new illnesses and diseases these days.


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