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Month: December 2008



OK, I’m getting pretty darn sick of not s l e e p i n g.  It makes me weird, or weirder and it makes me cranky. And I tend to do little menial things that no one in their right mind would do if they had the time.  Like getting the dirt out of the bottom cracks in the designs on kitchen cabinets with q-tips?  No one ever does that.  So if you can’t sleep, and you’ve sworn off of picking up the computer (thereby probably blowing your chances of any sleep at all) put the q-tips down and back away.  Back away from the q-tips.  I wonder how many hits this is going to get from people with ear issues who are Googling q-tips.  Then they get this, and their like, I can’t stand to read her, it’s a good thing my ears are messed up, could you imagine having to have to listen to her?? ahhhhh hahhh.  I’m going to put on some coffee.  Then I don’t know what.  Maybe I’ll take some pics of the snow!  It snowed here last night and just a bit stuck.

Until next time (after a nap)

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

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 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

* * cross posted at, right here 🙂

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.

Until next time

Just goofin around

Just goofin around

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…

Here’s the clip  🙂

Is it Friday yet? Boogers, videos, and random thoughts…

Is it Friday yet? Boogers, videos, and random thoughts…

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


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