Counting Threads - Patty's website

The walk was a great success.  I earned over $600, won a gift certificate at the walk and was able to get an MP3 player as a prize.  It was loads of fun - the day was beautiful and the kids were great who participated. 

Thanks to all who helped make this year's walk a success.  My page is still open - I hope to get a team together for next year again.  If you're interested in walking with me or donating next May, let me know!

EXCITING UPDATE:  I have an anonymous donor who has volunteered to match donations I receive up to a set amount.  If you haven't already done so, please donate any amount so that I can take full advantage of this very generous offer!

Please check out my page for the Arthritis Walk.  I'll be walking on May 10th to raise money for research and programs throughout New England for the Arthritis Foundation.  My goal is $150 raised.  Please support me by making a donation either online at my page or in person. 

My walk page address is:  http://manchesteraw.kintera.org/countingthreads

I appreciate any support I get!

For those of you who don't know my story, I thought it might help to tell it.

I was first diagnosed with Juvenile Rheumatoid Arthritis (JRA) in 1962 at 18 months of age.  However, my mother tells me that she suspects I actually had it much younger than that.  I used to cry when she lifted my legs up to change my diaper; she noticed that my legs were sometimes quite swollen.  She became suspicious when I didn't even attempt crawling on my hands and knees but just scooted around on my backside. 

At first, the doctors were perplexed; they did not know what I had.  One diagnosis was cerebral palsy.  Eventually, after exploratory surgery and many tests, it was determined that I had JRA.  I was put on a regimen of high doses of aspirin and I was given braces for my legs.  My parents were told they wanted to take away the mobility of my knees because, the thinking was, that if I had no range of motion, then I could not be in pain. 

In 1966 or thereabouts, my mother took me to the University of Heidelberg Medical Center.  My dad was an American GI stationed in Germany and my mom was a German citizen.  The University of Heidelberg was on the forefront of pediatric medicine at the time and someone suggested my mother take me there and get a second opinion.  The first thing the doctors there suggested is taking the braces off and the second thing they did was put me on prednisone.  This was like a miracle for me and my family.  For the first time that I could recall, I lived relatively pain-free most of the time.  I was able to walk without assistance and eventually even learned to go up and down stairs by myself.  I remember how proud I was the first time I was able to do that.

Throughout the years, I have been on many different medications and have had many flares of my JRA.  Originally, only my knees were affected.  At this point, my knees, hips, elbows, some fingers (although the fingers are less serious), shoulders, and ankles are affected.  My JRA is under good control at this time; however, my last serious flare in 1999 had me using a cane and wheelchair for the first time in my life.  I also needed to buy several devices to help me do ordinary tasks like take a shower and use the bathroom. 

I have been fortunate in that I believe I have a mild case of JRA.  I'm able to function most days quite well with the medications I'm on.  However, when I'm honest, there is still a lot I would like to be able to do that is just not possible.  My youngest son has taken up hiking and backpacking.  He comes back with the most amazing photos of the places he's seen while hiking.  I would LOVE to share that with him and he has indicated he would like me to.  I will never be able to do that no matter how much we would both like it.  I would love to go on long bike rides with my husband and children.  I have not been able to ride a bike since 1988 or so.  I would love to be involved in sports and feel like my body is working well but am resigned to the fact that this will never be.

I don't resent the arthritis - I have learned to live with and accept it as part of my life.  That doesn't mean I wouldn't change things if I could.  If there is ever a cure for arthritis I'll be one of the first people in line.  If researchers are ever able to find a way to reverse the damage of arthritis, I'll be right there.  If that day ever comes, I will hike and backpack with my son, go on a long bike ride, take up soccer and do all the things that I have had to miss out on.

Please consider donating to my walk on the link above.  Help the Arthritis Foundation to research and find a cure.  Help them to help others like me to learn to live with the arthritis and make the best of it.  Think of the children living with arthritis today - all 294,000 of them in the US - and then make a donation to support them. 

Thank you for your support.