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?
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.
The Arthritis Prevention Control and Cure Act, HR1283 is scheduled for markup today before the House Energy and Commerce Committee. I totally missed the boat on the opportunity to call my congressional representative and have my voice be heard. I got the alert in my email yesterday and this flu bug has got me so down, I put off checking my email… I’m really upset that I missed this. All I can do now is pray. So many people have put in such hard work with their efforts to have their voices be heard. I really hope that it pays off. I want to thank every one of you that wrote to your reps and told your stories.
From the Arthritis Foundation email:
The Arthritis Foundation has been working closely with our Congressional sponsor and champion, Rep. Anna Eshoo (D-CA), to address concerns and reach consensus with other members of the Committee. At this point in time, although the bill has been formally ‘noticed’ (at the above link) there are still ongoing negotiations to avoid a non-arthritis controversial amendment that may be offered.
This is the first piece of bi-partisan comprehensive arthritis legislation in more than 30 years. The Arthritis Foundation, through its volunteers and staff throughout the nation, and in Washington DC has been fighting for this bill for over 5 years. As an arthritis advocate, you have been instrumental in helping to build support for this bill through your tireless efforts at letting your Member of Congress know how important it is to support this bill. THANK YOU!
This legislation, if enacted, will improve research and public health for adults and children with arthritis and it will help reduce the treatment barriers for children with arthritis. The bill still requires House passage which is not guaranteed due to the limited days Congress is in session – we will be alerting our grassroots and our Arthritis Ambassadors to ensure action is taken before Congress adjourns for the year. We will be working closely with our Congressional sponsor, Anna Eshoo to make a strong push to ensure the bill is scheduled for floor action before final adjournment and have been in continuous contact with our Senate sponsors with a corresponding strategy. Although we still have hurdles to overcome before the President signs this bill into law, we will be making significant progress tomorrow.
In order to ensure “smooth sailing” at the Committee “mark-up” on Tuesday, please call your Member of Congress and urge support of the Arthritis Prevention Control and Cure Act, HR 1283 without any controversial amendments in Tuesday’s mark-up.
After looking at the schedule this should be going on now, or just ending. Let’s keep our fingers crossed.
There are so many really informative videos on Lupus out there that I’ve found and not much on Rheumatoid Arthritis. That’s my new tentative diagnosis. I got my shot of methotrexate today and that always makes me feel so sick and sleepy so I finally got some sleep!!! Yay!!!!! So after I woke up I decided I would link a video about RA here for some info. This is the best one I could find here.
I’m going to do some more searching later to see if I can come up with something more entertaining, woo hoo!!! Let’s have fun with Rheumatoid Arthritis!