update

[Guest guest]

Hey everyone I know that most of you know how I have been doing but I just

wanted to give a solid update. Well, I have 3 requests and it's the busiest

Knots of Hope has ever been. There's now chat room on the website and it's all

been a great success. I am so thankful for all of the blanket people. The kids

are adorable and they sound awesome. I am so happy to be able to work with these

kids. I was able to attend a lovely arthritis camp in Winder Georgia, it was an

amazing. I am so happy to write this update because I have something positive to

say. As you guys know it was always, flare, flare, flare. Now, things are well,

normal. If feels so weird typing that, I am so used to telling people that I

just want to be normal. I went to my pain doctor, we now know that my brain is

so used to giving me pain, that it goes overboard. When I first saw my pain

doctor I was at a low point. She only saw me when I was crying 24/7. I had to

use a chair to get up on the exam table, because it hurt to bad to jump up. I

hopped up on the table and Dr. Venable looked amazed. She Thought I was doing so

well that she brought in 4 different doctors, to show off I guess. I went to see

the rhuemy and thumbs up from her. It's so crazy, I get settled and there's

good news every where and......BOOM a flare. I am so used to that now I will

never be able to really enjoy regular life, because it will always be on the

back burner. This will be the first time i have ever typed this but, the huge

announcement on the video was that I am going to see my congressman in the fall.

I am so excited and I can't wait to tell him about your amazing kids. I know

that I am not the only kid that needs to be spoken for at this meeting. Right

now, the government spends 9.8 million dollars on research. But that's only $32

for each kid. So, I have no clue what I am going to say! Feed my brain ideas!!

Pretend like I am handing you play doh, help me mold it!

(ps never tell your kids to be creative, tell them to do something that only

they could think of)

(pps that was from a study in a magazine)

Thanks!!

Shea Reasoner