Donate to RSDSA via Instagram

Published on July 24, 2019 under RSDS General Info
Did you know that you can host virtual fundraisers for RSDSA on Instagram similar to how so many of our Warriors host them on Facebook? Check out our easy step-by-step guide to adding the donations sticker to your Instagram Story via the mobile app: Login to your Instagram account. While on your timeline (the feed where you see photos and videos from your followers) click on the camera in the top left-hand corner to access your camera. You can also swipe to the right.   This is where you will begin designing your story. From here, you can do a few different things: Take a selfie or another photo of yourself. Swipe the screen up and pick a photo from…
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Meet Our Team: Pam Kientzler

Published on July 17, 2019 under RSDS General Info
This summer, we're taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization. What is your name and title? I’m Pamela (Pam) Kientzler, and my title is Administrative / IT Support. How long have you been with RSDSA? I’ve been with RSDSA for a little over eight years. Before RSDSA, I worked for an insurance owned broker dealer / investment advisor for 20 years and worked from home for the last five years after moving to Connecticut in 2002. After retiring, I worked various jobs until I landed here at RSDSA in 2011! What is your favorite part about working with RSDSA? I would have…
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Top Tips to Reduce Pain While Flying

Published on July 10, 2019 under RSDS General Info
Written by Kristi Oen for the RSDSA blog. Are you ready to fly away for vacation but you are slightly terrified of what your CRPS is going to do and how you can handle that? Well, let me give you some tips! Hello everyone. My name is Kristi Oen and I am a CRPS Conqueror and the founder of P.A.I.N. Help. I have had CRPS (Complex Regional Pain Syndrome) since I was 10 years old. That is 33 years of CRPS and figuring out just what the heck I can do with it. Therefore, I have come up with quite a few of my own little CRPS life hacks. A lot of people are preparing to fly due to great…
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Resources for Patients with CRPS/RSD and Chronic Pain

Published on July 3, 2019 under RSDS General Info
Written by Melissa Wardlaw for the RSDSA blog. In my work as a CRPS/RSD, Chronic Illness & Pain Peer Counselor/Advocate, many patients contact me for assistance and support - particularly those who are newly diagnosed. After speaking with CRPS patients, I usually send them a list of resources they may find useful. As we all know, there is a lot of propaganda online about CRPS, and navigating the web or “Dr. Google” can be a very scary thing sometimes. Unfortunately most physicians are unfamiliar with CRPS, so in lieu of asking them for advice, sometimes we have no choice but to turn to the web or our peers to try and find out all we can about the disease. Below…
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Coping With Comments

Published on June 26, 2019 under RSDS General Info
Written anonymously for the RSDSA blog. A guide of what not to say to someone with an invisible disability. This post is written with the best intentions, directed to educate, not judge nor shame people who may not have sensitivity to topics they not know about. But I would like to touch on the topic of invisible disabilities, more specifically Reflex Sympathetic Dystrophy (RSD). Having an invisible disability can be very challenging, similar to disabilities that can be seen to the eye. People tend to not understand and think you are faking something you wish you never had. But looking in from their shoes, you can see where confusion may lead them, and they may not be informed before they…
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The First Touch

Published on June 19, 2019 under RSDS General Info
Written by Richard Heuser for the RSDSA blog. I was at the 76 mile point of a 100 mile bicycle ride in the Delaware Water Gap area of New Jersey going down a a steep incline at about 44 MPH. When I tried to break the handlebars rotated down and I went off the front of the-bike as if I were diving off a diving board. I have a mental picture of being airborne above a shiny guard rail and the thought, "I do not want to hit it" going through my brain. They told me that I skidded about 35 feet on my face and hands, and I woke up under a guard rail. I could not feel my…
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The Reason We Walk at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo

Published on June 12, 2019 under RSDS General Info
Written by Debbie ONeal for the RSDSA blog. When you are diagnosed with CRPS, which is ranked as the most painful chronic pain condition known to man, you wonder why more doctors are not aware of what it is or how to treat it. You wonder why there is not more research being conducted and why there is not a specific treatment to help control the pain, especially since CRPS was first seen and diagnosed during the American Civil War. How can we rectify this? How can we help make a difference?  My co-chairs, Beth Seickel, Stacey Udell, and I had the idea to bring together those who have been diagnosed with CRPS and the medical community through a walk…
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Meet our Team: Jim Broatch

Published on June 11, 2019 under RSDS General Info
This summer, we're taking the time to introduce the RSDSA team to our Warriors and their families so you can know the names and faces behind our organization. What is your name and title? I'm Jim Broatch and I'm the Executive Vice President and Director of RSDSA. How long have you been with RSDSA? I’ve worked for RSDSA for 20 years, first in Haddonfield, NJ and then when it relocated in Milford, Connecticut. I moved the office to my hometown when Roe and Frank Davis, two of the RSDSA founders retired. Each day, I walk to work with Murphy my beautiful and loving golden retriever. What is your favorite part about working with RSDSA? That each day, I’m given the…
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CRPS, a New Four-Letter Word from Hell

Published on June 5, 2019 under RSDS General Info
Written by James Doulgeris for the RSDSA blog. August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional. CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.” I’ll get to why shortly. It's now ten months later and I push through day by day. In my work as a healthcare executive and now life…
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The Light Side of Pain

Published on May 29, 2019 under RSDS General Info
Written by Maria Martinez for the RSDSA blog. I am 50 years old and have been married 30 years.  I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days. As a wife and mother, I could not be happier about their choice of spouses. I adore my husband and had so many plans for this time in my life. All those plans were waylaid in 2008 after a cervical mitre.  The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my…
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