Marisol Maldonado: Her Diamonds By Rob Thomas

Alternative rock musician Rob Thomas is both the lead singer of the band Matchbox Twenty and a solo recording artist. His most recent album – Cradlesong – was released just last month.

Rob Thomas has been married to Puerto Rican American model Marisol Maldonado for almost ten years. Marisol lives with a rare autoimmunity disorder that is similar to Lupus. “Her Diamonds”, the lead single on this latest album, shares the story of the couple’s battle against this autoimmune disease.

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.” RobThomasMusic.com

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Juvenile Arthritis Awareness Month

The month of July is juvenile arthritis awareness month in the United States.

Juvenile arthritis (JA) refers to any form of arthritis or arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions.

For more information, visit the Arthritis Foundation’s Juvenile Arthritis Alliance.

Arthritis Foundation Logo
Don’t Forget to Contact the FDA Today

JA Registry Needed Now!

We need your help!

The Arthritis Foundation has been advocating for many years for the creation of a juvenile arthritis registry. A JA registry would improve the care children with arthritis receive. It would help pediatric rheumatologists make better decisions about the type of medications our children need and it could serve as an early warning system if there are unintended side effects or outcomes of JA therapies. The Arthritis Foundation testified last month at the Food and Drug Administration (FDA) recommending that such a registry be established:  http://www.arthritis.org/murphy.php

Now it is your chance to let the FDA know we want them to continue their commendable work in this area and make our dream a reality – the creation of a fully funded JA registry that would help our kids! Click here to learn more, take action and become an advocate!

Please personalize your letter with your individual story and feel free to include some or the entire letter which can be downloaded here.  Please submit your comments either by regular mail or email by July 14th to:
Division of Dockets Management
(HFA-305), Food and Drug Administration
5630 Fishers Lane, rm. 1061
Rockville,  MD 20852
Or
Submit electronic comments to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=09000064809306d1
All comments should be identified with: Docket No. FDA-2009-N-0145

I must admit that when I first heard of this proposed registry, I was a little reluctant to support it – based on privacy concerns. But I had done quite a bit of research on autoimmune illnesses as a whole during the past few weeks, and one of the things that stood out to me was researchers talking about the importance of such registries in their endeavors.

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We Interrupt This Program

Old TV with StaticRheumatoid Arthritis Guy had another post all lined up and ready to go this morning. All I had to do was click the “publish” button in WordPress, and it would have been out there for everyone to read – even before I started typing these words.

But I’ve gone through such a swing in the past few hours, that the words that were written in that other post now seem to be the furthest thing from my mind.

Last night, a couple of hours before going to sleep, I was overcome with a feeling of intense range. I was angry that my hands had hurt for a large part of the day. I was angry that most of the pain was in my fingers and not my wrists; this little detail alone accounts for probably a ten-fold increase in pain. I was angry that I had difficulty writing earlier during the day, even though I had placed an extra-wide grip cushion on my pen.

I was angry with a thought that had just passed my mind: that I should to buy a loose shoulder bag in order to more easily carry stuff around the house. (For some reason, when I use both crutches I’m not left with a free hand…so I often try to compensate by either dangling something from a finger or squeezing it under my upper arm.)

I was angry that, through no fault of my own, everyone around me is forced to deal with the struggles of living with rheumatoid arthritis.

I was angry that rheumatoid arthritis was having such a pronounced effect on my life, and I didn’t know what to do.

So I cried. I cried alone. I didn’t want to talk to anyone else about the feelings that I was experiencing. I was too scared that I would take my anger out on them. (I have done that in the past during such moments, and have always come to regret it.)

I wondered how I was going to release all of my anger…it felt like it would never pass. As soon as I told myself that I was indeed angry, and that it was okay for me to feel this anger, I immediately felt a little better. If nothing else, at least, having these feelings of anger began to make a little sense.

And I begin to realize that, as with depression, recognizing that I am angry is the first step in moving through it. The second similarity is the understanding that I need to process these emotions in a manner that will cause the least harm, to both myself and those around me.

Too often, in the past, I have had my “angry at the world” periods. I now see what was wrong was not my anger, but how I released that anger. Not only did these stages last way too long, but I pity the person who dared to cross my path during those times. Now – I know that taking out my rage on others was wrong. Then – I knew that taking out my rage on others was wrong. But like I said, I still had not learned to open up the release valve in a healthy manner.

So I still have that simmering sensation inside of myself, but one positive thing is that the overall level of anger is lower than it was than last night. The second positive thing is that I was very aware throughout the entire episode to not take my anger out on others – even if it did mean secluding myself for a short while.

And as I try, little by little, to turn my thoughts back to the positive, I would like to share one small victory I had last night. Up until then, I had not been able to wear my ulnar deviation gloves for a period of more than one hour. Only one time did I get up to ninety minutes. The goal, eventually, it to be able to wear these gloves overnight as I sleep – but the muscle strain that results from forcing my hands to align correctly reaches a point where I cannot take it any longer.

Last night, after the worst of my anger passed, I realized that I have been wearing my ulnar deviation glove for almost two and a half hours.

This accomplishment, though small, is something for me to be happy about.

And I think I just might look for that shoulder bag to carry items around the house. I think it will make my life a little easier.

If you have any hints on how you release your anger in a healthy manner, please do share.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy.

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Updated: Kim at RA (Rheumatoid Arthritis) Sucks just posted some eloquent words on the relationship between rheumatoid arthritis and anger.

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Arthritis Song By Chris Kirby

I am sitting here on this Sunday afternoon rubbing my hands together, literally, trying to lessen their pain. So it was with much joy that I read arthritisfriend’s blog post Guitar Strings and Joint Pain: Musician Chris Kirby Changes His Style.

Don’t miss this post, don’t miss the lyrics, and don’t miss listening to the song (there’s link at the bottom of the post).

“Hands, don’t you quit me so easily
You don’t even know
Though you’ll never need me
Don’t go

I’m losing my hands
Years by the hourglass
So don’t tell me not to be scared
Until you play by the rules
Of heroes and fools
And lose
And be no better for it”

Arthritis Song
Chris Kirby

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Sunday Break

Because there is no such thing as taking too many breaks!

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Institut du Monde Arabe

A detail of the facade of L’Institute du Monde Arabe in Paris, France. Designed by French architect Jean Nouvel, this wall is comprised of 240 motor-controlled apertures which open and close every hour. This modern technology mimics brise soleil (sun-shading) techniques often found in Islamic architecture. I like how on the morning of my visit, the clouds in the sky were reflecting on the glass.

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Last night I started reading The Diving Bell and the Butterfly by Jean-Dominique Bauby. After suffering a massive stroke to the brain stem that left him in a condition called locked-in syndrome, the author communicated and wrote this book solely by blinking his left eye. I plan to watch the movie adaptation after I finish the book.

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Today is International Bikini Day. Who knew? On this date in 1946, Louis Reard introduced the skimpy two-piece swim suit at a Paris fashion show. Bikinis are named after a Pacific atoll where nuclear bombs were first tested. The reasoning behind this name:  that the burst of excitement created by it would be like a nuclear device. Like I said, who knew?

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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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