I found this amazing video on Vimeo, it’s a pretty cool site if you’ve never checked it out. Oh wait, these are words. Since I already blew it I’d like to credit the video-it’s by Lonny Quattlebaum, the skies in Wichita Kansas in June. Enjoy
This video asks to forward on to friends and family and this is the fastest and easiest way to do it!
I heart the Arthritis Foundation!
I’ve been gone for a few months. I’ll go into that in another post, loooong story. I would like to apologize to all the readers who left a comment in my absence. I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight. Thank you for reading my blog, and thank you for your comments. I will respond to them tonorrow, my eyes are closing. (wimp here) Thanks again everyone for hanging in there with me. And don’t forget to forward the video!!
I am so glad I saw something about this on Facebook. Here is an excerpt from the bio on Rob Thomas’ website:
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.”
That gift of turning the personal into the universal has long been a hallmark of Rob’s work. “If I can take a specific moment in my life and write about how that moment makes me feel – not about the moment, but the way the moment makes me feel, all of a sudden I’m in a territory where a lot of people can understand that. A lot of people understand that feeling; they have other things in their life that make them feel that way. If I write ‘3am’ about my mother dealing with cancer, that’s a very specific moment, but if I write about how that made me feel, then it opens up and it becomes a universal moment.”
I went to the site and watched the video “Her Diamonds“. Wow. Writing a song about his wife’s illness and how it feels is really intimate and I’m so glad he did it. It opens up conversation about autoimmune disease to his fans. What is it? Which one does she have? etc. It must have been hard to open up their personal life and talk about his wife’s battle with autoimmune disease and how it affects both of them. I wonder if she wanted him to, to help the cause. I wish I could say thank you to him personally, I can’t so I will just say it here. Thank you, from the bottom of my heart-thank you. My husband and I watched your video and were both so touched. You nailed it right on the head.
I’ve always said if more famous people would speak about autoimmune disease, the population would be soon asking questions about autoimmunity. We really need more press and exposure. A lot of you know that there have been no new meds for lupus in 50 years. That’s just inexcusable. That’s just one example of how autoimmune diseases are at the bottom of the barrel when it comes to exposure, research dollars, and just plain understanding. How many people live with the pain and fear of their body’s attack on their body. Even that sentence doesn’t seem to make sense. None of it does. It’s so random.
Done, off my soapbox now. This is a video of Rob Thomas performing this song Her Diamonds live on the Ellen Show. To see the video of the song, you can go to his website at www.robthomasmusic.com and click on the videos tab, or just click here. 🙂
*******UPDATE*******I added his video, Her Diamonds to my vodpod on the left side of the blog. It is the first video in the lupus vids. Have fun!! Even though I want everyone to hear this song and talk about it, the song kicks ass. It doesn’t need a small town blogger trying to sell it. Enjoy!
I stopped by my You Tube account the other day and I’m glad I did. I got a message from Chandra, (theleepchatchannel), telling me about her new campaign for awareness. It’s called LEEP for Lupus ™. I really liked her video that described what lupus was. If you’d never heard of lupus, her video is a great explanation of it. I really liked the video and I know a couple of people that would benefit by watching this video. Sometimes it takes hearing about it from another source for people in your life to ‘get it’. Check it out!
I spent this Easter in bed, dozing off and on with the laptop sliding off of my legs every now and then. Not my ideal Easter. The Big C cooked a delicious ham with all the fixins- and I slept. The kids had an egg hunt, and I slept through it. A few of my grandkids got overly boisterous and got time out, I slept through it… lol.
I’m so tired of being sick and tired. And yes, I know that expression is tired, but it’s so freakin true. I haven’t been around much because I’m afraid to just blog about negative stuff, or sound like I’m whining. Each day I think about a post and I end up not doing it either because I am too sick, or too depressed. I refuse to let that get the best of me!! So every once in a while there will be a post with a lot of whining and bitching…no big deal, right?
So I’m laying flat on my back hiding from the mob in the house (kids, grandkids, the works) and I decided to go through my bookmarks and get rid of all the crap that I don’t use, have never looked at, and if there’s time before morning (ha) to re-organize them. But of course, I got sidetracked and logged in to my blogrover and started going through the blogs. I quickly crossed out all of the blogs that I knew I would never read, then started going throught the ones I wasn’t familiar with. When I opened up Smart Mobsthe first thing that caught my eye was this video. I remember seeing one like this a while back but the travelers seemed more pissed at having chaos in their way and slowing down their travel than these folks do. Have a look
Did you know that over 46 million adults have arthritis and over 300,000 kids do as well? You have a chance to tell Congress that more needs to be done, at the 2009 Advocacy and Kids’ Summit!
At the Summit you will meet personally with your Members of Congress, or their staff, and will have the chance to tell your story. How has it affected you? Your family? What is day to day life like for you? Anything you would like to say about living with JRA, RA, osteoarthritis, or if you suffer from one of the more than hundred other forms of arthritis? Now’s your chance!
Advocates will learn how to best communicate with their elected officials, attend a training workshop to improve their advocacy skills, meet with other advocates and network, and more.
Look forward to getting together with not just Members of Congress, (which is huge btw) but also people just like you and me; people who have arthritis and can relate to all of the trials and tribulations. It’s not just a matter of pain, even chronic debilitating pain… but money issues, health insurance or lack thereof, medicines, stress on family life, marriage, etc. We all need to know we are not alone, and boy, we sure aren’t with numbers like those above.
Register now for the 2009 Advocacy and Kids’ Summit, Capitol Hill, Washington D.C., March 2-4, 2009. For more information please click this link here.
Here’s some good news- The Arthritis Foundation Public Policy and Advocacy Department is offering stipends to attend. Stipends are limited to $1000 for an individual to $1200 for a family. Application deadline is Monday January 12, 2009.
I’m going to list the congressional districts or states eligible for the stipends. If you are eligible and would like a copy of the application please contact the Public Policy and Advocacy Department at firstname.lastname@example.org or 202-887-1700
Congressional Districts or States Eligible
1. Richard Shelby, AL
2. Lisa Murkowski, AK
3. John B. Shadegg, AZ 3rd
4. Mike Ross, AR 4th
5. Nancy Pelosi, CA 8th
6. Barbara Lee, CA 9th
7. Anna Eshoo, CA 14th
8. Michael Honda, CA 15th
9. Lois Capps, CA 23rd
10. Henry A. Waxman, CA 30th
11. Hilda L. Solis, CA 32nd
12. Lucille Roybal- Allard, CA 34th
13. Diana DeGette, CO 1st
14. Rosa L. DeLauro, CT 3rd
15. C.W. Young, FL 10th
16. Nathan Deal, GA 9th
17. Daniel Inouye, HI
18. Mike Simpson, ID 2nd
19. Jesse L. Jackson, Jr., IL 2nd
20. Jan Schakowski, IL 9th
21. Steve Buyer, IN 4th
22. Tom Harkin, IA
23. Pat Roberts, KS
24. Edward Markey, MA 7th
25. Mike Rogers, MI 8th
26. Betty McCollum, MN 4th
27. Dennis R. Rehberg, MT
28. Dina Titus, NV 3rd
29. Judd Gregg NH
30. Frank Pallone, NJ 6th
31. Jeff Bingaman, NM
32. Nita M. Lowey, NY 18th
33. Sue Myrick, NC 9th
34. Tim Ryan, OH 17th
35. John Sullivan, OK 1st
36. John Murtha, PA 12th
37. Joseph R. Pitts, PA 16th
38. Tim Murphy, PA 18th
39. Patrick J. Kennedy, RI 1st
40. Bart Gordon, TN 6th
41. Marsha Blackburn, TN 7th
42. Joe Barton, TX 6th
43. Michael C. Burgess, TX 26th
44. Gene Green, TX 29th
45. Jim Matheson, UT 2nd
46. Bernard Sanders, VT
47. Jay Inslee, WA 1st
I would do just about anything to be able to go to this summit. Not only can we not afford it, my health has been so bad these last 3 months, I wonder what the future holds for me. I WANT to be well, I am doing my positive thinking, taking all of my meds, saying all of my prayers, and waiting. Some days are good, but most are not and I’m really really trying to see the sunny side of life right now. We have to pick up prescriptions tomorrow and they are going to set us back $1000. Each month that’s what we pay for my meds. If any of you go, please contact me when you get back and tell me all about it!! I’m posting the video that the Arthritis Foundation has put out from last year’s summit.
Me and the Bean are hanging out together tonight. (Her nose is drying up thank goodness) and I’ve got the laptop with us. We got online to watch some Sesame Street You Tube clips and I came across a site called HULU. Well, I gotta tell you, I LOVE IT!!! I’m all about free, if you asked someone that knows me that might say I was cheap, but I call it frugal. Anyway, you have to check out this site. Free movies, tv shows, video games and more. I called the Big C to come check it out because they have free episodes of Heroes. Yeeaaahh boeeeeyyy.
I’ll leave you with a clip of Ice Age 3, the first movie which made my husband laugh out loud in the movie theater…louder than anyone else. One of those belly laughs where you might just snort and it’s ok…
What a weird week, it’s only Tuesday, but it feels like it’s been such a long week. We were going to go out for a drive yesterday to take some pictures but the Bean got sick and she is too funny when she has a cold. She doesn’t speak in sentences yet, but she does have a few words. One of her FAVORITE words is Elmo. She says elmo over and over and over…you get the picture. So yesterday she grabs one of her elmo toys and says ‘elbow’, over and over as a giant snot bubble bobs up and down in slow motion from the tip of her nose. I thought I was going to lose it. I can handle kid poop, vomit, blood, pretty much anything, except for boogers. I dry heave if I see a kid picking his nose. Those people, you know the ones, they blow their nose and then have to open the kleenex and insect it, yup, if I see that I start screaming and then pass out. So anyway, I have to deal with the bobbing bubble and every time she says ‘elbow’ it gets bigger and bigger. I guess there’s worse things in life than having to pop a snot bubble with some kleenex while trying to keep your coffee down, but at the time I couldn’t think of anything. I know, I’m a baby. But, it’s OK. I am a really strong woman in all other areas, I figure I deserve to be weak about something and about snot is totally acceptable in my book. cmon! OK, that was way too many words in this post having to do with a toddler and her body fluids. Well, just a few more words….this morning when she woke up, she popped up in her crib and said, “HI!” just like every morning except this particular one, half of the hair on the left side of her head was stuck to her nose….
I am blessed to get to see this smiling face each morning when I wake up, snot bubbles or not. She really grounds me. She doesn’t know it, but she is an integral part of my coping when it comes to living with chronic illness. I’ve said it before, she is my pain pill.
The other day I did a search for some videos on RA. I’ve added a few to my vodpod on the page here if you’d like to check them out. I’m still trying to find a good video on small fiber neuropathy.
Nap time for the bean and I’m going to join her. Until next time