Comments on: Getting Better http://www.rheumatoidarthritisguy.com/2009/09/getting-better/ Adventures of a superhero on his journey through chronic pain and debilitating inflammation Sat, 11 Feb 2012 15:02:02 +0000 hourly 1 http://wordpress.org/?v=3.3 By: cateepoo http://www.rheumatoidarthritisguy.com/2009/09/getting-better/#comment-1410 cateepoo Wed, 23 Sep 2009 13:23:33 +0000 http://www.rheumatoidarthritisguy.com/?p=7064#comment-1410 RA Guy, I feel like you wrote this for me today. I feel like I have gone through so many of the stages you mention here and "I am better" too. It takes a long while of dealing with this disease physically before we can allow ourselves to deal with the emotional side, but when we do, it feels good. It feels healing. I have finally come to the realization that my joints will always be my weak point just as the heart or stomach are for others. Knowing this helps me to REALLY enjoy the good days and to find positive ways of dealing with the bad days (well, that is the goal anyhow, right?). As much as I dislike having RA, I also don't know that I would ever wish that it wasn't a part of my life. It has made me who I am and I like that me. "I am better." Thanks for sharing this part of your life with us. RA Guy,
I feel like you wrote this for me today. I feel like I have gone through so many of the stages you mention here and “I am better” too. It takes a long while of dealing with this disease physically before we can allow ourselves to deal with the emotional side, but when we do, it feels good. It feels healing.

I have finally come to the realization that my joints will always be my weak point just as the heart or stomach are for others. Knowing this helps me to REALLY enjoy the good days and to find positive ways of dealing with the bad days (well, that is the goal anyhow, right?). As much as I dislike having RA, I also don’t know that I would ever wish that it wasn’t a part of my life. It has made me who I am and I like that me. “I am better.”

Thanks for sharing this part of your life with us.

]]> By: Adrienne Lauby http://www.rheumatoidarthritisguy.com/2009/09/getting-better/#comment-1409 Adrienne Lauby Tue, 22 Sep 2009 15:40:06 +0000 http://www.rheumatoidarthritisguy.com/?p=7064#comment-1409 You put your arthritic finger right on a huge problem for us in the disability movement, Rheumatoid Arthritis Guy! Why are services so poor for chronic illnesses? Why do doctors get bored with us? Why aren't we better advocates for the changes that will make life easier as we go about our day? Why are we embarrassed to use canes or wheelchairs, even when they get us around with less fatigue and pain? Because we want to be "better" Because society wants us to be "normal" Because it's easier for everyone if everyone with a disability pretends as hard as they can that there's "no problem" So, we have money for research for The Cure, but little for research for computer keyboards that work for people with arthritic fingers. There's many examples of this. The big one right now-- The MediCare money that is spent for nursing homes could go to the person who needs more help. They could use it to pay a nursing home, or to pay people to come help them at home. The home option is cheaper for the government, but the choice is the person with a disability. The New York Times has a recent article about this. It focuses on elderly but works for us young 'uns too. http://www.nytimes.com/2009/09/19/health/policy/19aging.html?_r=1&scp=1&sq=Money%20Follows%20the%20Person&st=cse ADAPT has been fighting to make this part of the health care reform. Stay tuned. You put your arthritic finger right on a huge problem for us in the disability movement, Rheumatoid Arthritis Guy!

Why are services so poor for chronic illnesses? Why do doctors get bored with us? Why aren’t we better advocates for the changes that will make life easier as we go about our day? Why are we embarrassed to use canes or wheelchairs, even when they get us around with less fatigue and pain?

Because we want to be “better”
Because society wants us to be “normal”
Because it’s easier for everyone if everyone with a disability pretends as hard as they can that there’s “no problem”

So, we have money for research for The Cure, but little for research for computer keyboards that work for people with arthritic fingers. There’s many examples of this.

The big one right now– The MediCare money that is spent for nursing homes could go to the person who needs more help. They could use it to pay a nursing home, or to pay people to come help them at home. The home option is cheaper for the government, but the choice is the person with a disability. The New York Times has a recent article about this. It focuses on elderly but works for us young ‘uns too.
http://www.nytimes.com/2009/09/19/health/policy/19aging.html?_r=1&scp=1&sq=Money%20Follows%20the%20Person&st=cse

ADAPT has been fighting to make this part of the health care reform. Stay tuned.

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