Events - RSDSA

Join us to Color The World Orange™ for CRPS/RSD Awareness on Nov. 2

October 19, 2015

By The Color The World Orange™ Team

Color The World Orange™ is almost here and we need your support!

An annual event held the first Monday of November to spread awareness of complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), on Nov. 2 Color The World Orange™ supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.

The easiest way to participate is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY™.

We had a goal to light the night orange on Nov. 2 and due to the hard work of Color The World Orange™ supporters, buildings across the world are helping to turn that goal into a reality.

In the U.S., the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive and Legislative Building, the Terminal Tower in Cleveland, Ohio, the Houston, Texas City Hall building, the giant soda bottle at “Pops” in Oklahoma City, Oklahoma, the dome of the Westmoreland County, Pennsylvania courthouse, the Gulf Tower in Pittsburgh, Pennsylvania and the South Street Bridge in Saegertown, Pennsylvania will all be lit orange, as will buildings in Chicago, Illinois.

In Australia, the SkyPoint Observation Deck, the Queensland Performing Arts Centre, the Brisbane Treasury Casino & Hotel, the Brisbane Convention & Exhibition Centre and the Melbourne Star Observation Wheel will all be lit orange. In the U.K. the Brighton Wheel is also scheduled to turn orange.

Four Color The World Orange™ supporters will be wearing orange as they run the New York City Marathon and three cyclists in the U.K. will be participating in a 12 hour “cyclathon.”

These are just a few of the amazing events that have been planned for Color The World Orange™ 2015.

In addition, 40 proclamations, with more on the way, have been granted by U.S. Governors and local officials recognizing Color The World Orange™ 2015 and November as CRPS/RSD awareness month.

Color The World Orange™ was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The goal of the event was, and remains, to have one day where everyone affected, regardless of where they live or the location of their CRPS/RSD or what organization they belong to, can join together for one common goal—bringing awareness to CRPS/RSD!

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

During the first annual Color The World Orange™ in 2014, buildings in New York, Chicago, Cleveland, Indianapolis, Indiana and Charlotte, North Carolina were lit orange, as were bridges in New York, Oklahoma City and a fountain in Australia. There were even CRPS/RSD billboards in Oklahoma City. One supporter ran the 2014 New York City Marathon, while another completed a 200-mile bike ride through the U.K.

Forty-four proclamations were obtained in 2014 from U.S. states and cities recognizing Color The World Orange™ and November as CRPS/RSD awareness month.

More than 1,000 tweets and more than 800 Instagram posts about Color The World Orange™ were made on Nov. 3, 2014.

Last year more than $7,000 from Color The World Orange™ events and fundraising was donated to the RSDSA to be used for research.

Let’s all work together to make Color The World Orange™ 2015 an even bigger success by wearing orange, and encouraging friends and family to wear orange! Make sure to take a picture and post it to social media with the hashtag: #CRPSORANGEDAY™.

Let’s show the world that while we are in pain, we are strong!

For more information and to find events in your area, please visit the Color The World Orange™ Facebook page or website at colortheworldorange.com.

CPRS is a Game of Wack-a-Mole

April 24, 2015

I want to introduce you to Diane Simonson, a first-time walker in this year’s walk.

I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig’s Disease, and everything else under the sun. As many of us have experienced – doctors told me I was ‘faking’ it, and it was ‘all in my head.’ (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together as a team to support and monitor me to this day.

I made the decision early on to not have any procedures done – no spinal stints, no Ketamine therapy -nope. Just some medication. When I told my doctors I was going to walk again, some looked sad and said “We don’t know a lot about this illness”, or told me not to get my hopes up too high. One doctor told me that my time would be better spent learning how to cope with this change in my life. (Not an HSS doctor!)

It began in one leg, but soon spread to the other leg, both arms, and left ribcage. I could not bend my head forward enough to brush my own teeth. There was one point where I decided to ask to have both legs amputated. (Thank goodness I didn’t!) It took me three months to get my legs to bend so I could get into a wheelchair – probably the second most happy day of my life…to be pushed through the park – out in the green for the first time in months…I still get teary-eyed thinking about that.

Two to three hours of therapy every day on my own, and several years of PT visits twice a week. I moved to a rollator – yelped every time the wheels hit a bump…but I was upright! I didn’t care. Then to a cane! Two flare-ups set me back, but RSD chose the wrong person to mess with. November 2012, I walked outside without a cane. The happiest day in my life! Since then, I have only had to use the cane about three times a year.

Of course, this illness completely changed my life. Divorce, had to leave my job, sell my home. Still putting it all back together.

Currently, I manage my illness. It is a game of wack-a-mole. A flare-up in my hip for about a year before I found out it was RSD and not an injury from a fall off my shower seat – nipped that in the bud. I had a flare-up in my larynx; if I lean my arms on my desk without my pillow my lover arms flare up, blurred vision when stressed; I figured out that my index finger was swelling and in pain because I hit the elevator button and light switch with my finger tip (use the knuckle!) A lot of time trying to figure out why the pain is where it is and get it gone. I manage balance problems, proprioception issues, stairs; inclines…these problems vary from day to day and catch me off guard.

[Funny story: I went to see Nutcracker this past December and got a seat in the Mezzanine. The incline was so steep – with no hand-rail, I entertained the whole Mezzanine audience by sliding down the stairs to my seat on my butt – Terror-stricken the whole way! I found it amusing that here I was doing that when, years ago, I had danced more than my share of Nutcrackers!]

Yes, I can walk right now! I never believed in miracles, but I do now! I am so amazed and grateful (oops, and teary-eyed again) that I will actually WALK in the 2015 Achilles Walk for Hope & Possibility this year to support all my dear, dear friends who are also struggling with this illness every day. All of us can have a miracle.

I would love your support. Please sponsor me – OR BETTER YET: COME JOIN ME! How wonderful would that be if you were there! Join the Debbie’s Warriors group!

Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!

To support Diane, please make a donation to her page.