Long Island and CRPS- RSDSA’s New Walk
By Samantha Barrett, Special Events Coordinator
There is a new event coming to the RSDSA community. I have been particularly excited about it since I’ve been working with the three wonderful women from the walk committee for months now. Millie, Debbie, and Beth all live with CRPS. They hadn’t known each other very well until this walk started to get planned. These three women have been working day in and day out to ensure that the Long Island CRPS/RSD Awareness Walk is a success. Every two weeks, we have a giant conference call and I get to hear about everything they have planned for September 10, 2016 in Eisenhower Park. It is an event not to be missed. Because I have been so inspired by their hard work and dedication, I asked to interview them for The Tuesday Burn. Here we go!
Sammie Barrett: Hi ladies! Can we start with an introduction and maybe a bit of your story?
Millie: My name is Milagros Cabrera. 3 1/2 years ago, while at a pistol range, I was hit in the left wrist with a piece of bullet. Shortly after, I was diagnosed with RSD/CRPS. I had no idea what that was, but I did know it was serious. Doctors explained it was nerve damage due to the bullet entering my wrist. I could only remember them saying it was a chronic condition with no cure, just maintenance. I was so scared. I became more frightened by the symptoms. I lost feeling in my hand/wrist, I felt this burning sensation in my arms and hands that traveled into my shoulders & back. It eventually traveled to my right side as well. I had this thing that I couldn’t control called RSD in all of my upper extremities. I felt weak and sensitive to touch, as well as temperature and texture changes. I thought: “What the hell is happening?” I begged, pleaded, negotiated, and fought to make it go away, but it didn’t. I asked God: “Why? Why? What is this?” No more hot showers, no more cooking that I loved to do, no more cleaning, and no more dancing or hiking. How my hand and body were on fire and the muscle spasm was scaring me. I said to myself: “I can see this as a monster and fight it, or [I can see it] as my friend and hang out with it.” So, when I’m on fire, it is “the monster” and when it gives me good days, it becomes my “best friend.” I decided it wasn’t going to control my life. I started physical therapy, acupuncture, aqua therapy, massages, swimming, and walking, which has helped me a lot. [All of this is] in addition to the medication and pain management. Through my journey, God allowed me to meet a lot of wonderful people, whether I met you at a park, pool, doctor’s office, or in a parking lot.
Debbie: My name is Debbie ONeal and I was diagnosed 13 years ago with RSD/CRPS. I had never heard of this condition before and there was not much information on the internet. In my search for information, treatments, and explanations that I could understand, I came across RSDSA a non-profit organization.
Beth: My story began 9 years ago post a fall at work. As a RN, I didn’t think it would be a life changing event. Have surgery and some physical therapy and WHALA….back to my old self. I couldn’t have been more wrong. That’s when the nightmare started. Waking up in the Recovery Room, all I could do was scream in pain. Not from post-op pain, but from intense, non-describable, unrelenting pain. For 6 months post-surgery, I went for more tests, procedures, consults, etc. in attempt to find an answer. Why was I having muscle spasms, electric sensations running up and down my leg, sensation of glass cutting my leg during a shower, [the] inability to have bed sheets touch or cover my leg, swelling, bluish nails/toes, excruciating pain from wind/breeze, the inability to wear socks or shoes, and forget about a touch including the physical therapist working on my leg? This isn’t pain, this is TORTURE. Never in my life have I ever felt this. unrelenting, neuropathic sensations that are not usual to what post-op healing should feel like at all. The struggle to get help from this strange thing happening to my body became a mission for me and my family. With my husband, Glenn, and kids, Danielle and Evan, witnessing my body being tortured, [there are] NO words. Not being able to care for my kids, take care of the house, be a wife, work, or just function has been the most distressing part. Finally, the diagnosis of CRPS (Complex Regional Pain Syndrome) formally known as RSD (Reflex Sympathetic Dystrophy) after 6 months finally arrived. YAH, now we can move forward. I can work with this. That didn’t last long. Years of hospitalizations, procedures, medications, therapy, PT, etc. created a plethora of emotions. From fear, grief, sadness, loss, and total frustration, I had to work through reinventing who I was, to who I am now. NO longer was I the “independent” strong nurse and mother caring for others. Now, I was the one in need of support and assistance. With every complication from CRPS, despite whatever I tried to do, this condition wreaked havoc on me systemically. So hard to believe this “monster” inside me could affect my body this way. Yet, I won’t give up.
SB: You are all an inspiration. It’s amazing how a monster such as CRPS can bring people together. What inspired you to partake in the Long Island CRPS/RSD Awareness Walk?
M: I first spoke to Jim, the director [and Executive Vice President] of RSDSA when I was in my state if fear, panic, and confusion during my early diagnosis. He is wonderful. He had me talk to a women named Lynn. God, she was my guardian angel. All I could say to myself [was]: “How did God send me these two wonderful people who really care about me?” Thank you, God, because I didn’t want to check out, I was just so afraid. They checked up on me monthly to make sure I was hanging in there. Thank you to you both. When I got a little better, I met Jim at TGI Fridays in Manhattan. I told Jim I wanted to organize a walk in Nassau county where I live. I told him I didn’t wanted this to be a secret anymore. I wanted everyone to know about this condition. I was tired of the isolation and [I was tired] of individuals looking at me like a monkey in the window, or not believing, nor understanding what RSD was. I asked him to let me pioneer this walk. I needed to organize this walk for my psychological [health] as well. I had to learn to accept my condition and stop seeing it as [if] it existed outside of me. I wanted my friends, family, love ones, and others to know about this condition and how difficult it is to have it. I went to Eisenhower park and applied for the permit. At that time, when I pick up the application for the walk permit, I was hysterically crying and Ms. Hood, who issued the permit, was speechless. She couldn’t understand why I was crying. I tried to explain while the tears rolled down my face. I said to her: “I have this thing called CRPS/RSD and I have to do this for me and for others.” She didn’t even know what it was about, but she was sympathetic to me. I then spoke to you [Samantha]. You have been my cheerleader and in my court, even during the times of my confusion and my 100 questions. At times when I became discouraged, Samantha constantly encouraged me and reassured me that everything would be ok. Every time I talked to [Samantha] about doing the walk, I would always cry and she comfort me. Samantha was right. We are here today, ready to do the walk! Thank you. Then, I networked with two other wonderful women, Beth and Debbie, who have CRPS. They were willing to fight, just as I was. They were willing to work as hard as I to break this secret and to share [information about this condition] with others. Even during or most difficult times- tired, sick, in pain, sad and happy we have stuck together to make this possible. I’m so thankful for them.
D: I will always be thankful for the amount of time Jim took to talk to me and the material he sent me on RSD/CRPS. I wanted to get involved with this walk is to raise Awareness of what RSD/CRPS is. Imagine going to a hospital and you’re in extreme pain & the slightest touch can cause you to cry and you are treated like a drug addict because you look fine. Not all of us who have RSD/CRPS show signs of the condition all the time. We need to raise funds so that doctors, nurses, & other health care professionals are educated on what RSD/CRPS is. [Medical professionals need to know] how it effects our whole body because it is our sympathetic nervous system that is damaged. We need protocols to be put in place for patients who have RSD/CRPS. RSDSA goes around the country and helps to educate health care professionals. They donate money for research, they help fund a summer camp for children with RSD/CRPS among other things. Most importantly, they have always been there for anyone with RSD/CRPS that reaches out to them for help.
B: I wanted to support RSDSA. They are on the forefront of advocacy, education, and research for those suffering from and disabled by CRPS. I wanted to help by raising funds through a walk, roll, or run. RSDSA was there for me 9 years ago. Now I want to get the word out on the RSDSA mission: “To provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while driving research to develop better treatments and a cure.” It is a great forum to bring together those with CRPS as well as health professionals who may or may not know what CRPS/RSD is or what support is available through RSDSA. Plus, CRPS can be very isolating and frustrating. The walks help decrease that feeling.
SB: Well, this is certainly going to be an incredible day. What can people expect to experience at the Long Island CRPS/RSD Awareness Walk?
B: There will be so much at this walk. First and foremost, everyone will get to meet and network with other people that live with CRPS [or care for people with CRPS]. Not just adults, but children also! The 5K walk is for those without mobility challenges [although anyone can participate in the 5K]. The 2K path is better for those with mobility challenges. This path will be surrounded by educational signs, will be decorated in orange, and will have people cheering them on as they participate. There will be speakers, food, music, resources, and most importantly A LOT of fun! We are kicking off the event at 8AM with registration. At 9AM, there will be a few brief presentations, including some by doctors and by Senator Michael Venditto as well as an Assemblyman. We will also be presenting awards to a few people and will be presenting Jim Broatch with a check. At 10AM the walk, roll, and run starts, just make sure you’re ready for our group picture! Then, from 11AM until 2PM we will be barbequing! Join us for our picnic, check out the vendors and sponsors, participate in our craft, get your face painted, and don’t forget to buy your raffle tickets! There will be so much support there. Even seeing everyone wearing the event shirts will impact you. We all hope you leave with a better understanding of CRPS/RSD, what is available, and RSDSA.
SB: Talk about a can’t miss event. What are some of your goals for the walk? What do you hope people will take from this event?
M: The goal is to raise money for education, research, services, and a cure!! It will be a great experience. You will meet other people with CRPS/RSD and their loved ones. You get to build your network [and support team]. This will be a FUN walk!
D: Walks bring together people who have been diagnosed with RSD/CRPS and their families. It gives them the opportunity to meet others who suffer from the same condition. Even though you wouldn’t wish this on anyone, it is nice to know you are not the only one. There is the opportunity to make new friendships.
B: Our goal is to raise $25,000 for our first annual walk. We want people living with CRPS, families, the medical community, and legislators to gain a better understanding of what CRPS is and how it is different for every individual! We want there to be a better understanding of what chronic pain patient with CRPS look like. What you see isn’t what it is. We want everyone to feel the compassion, understanding, and empathy that this community has for one another. You are not alone!
SB: Absolutely powerful. Now, sometimes it is difficult for people to be able to commit to a walk because they don’t know how they will feel that day. What would you say to someone that is on the fence about joining this walk?
M: You are not alone. We are all a family. Don’t give up, [even though it can be] easy to do that. It is harder to fight. But RSDSA is a wonderful organization, they will help you. Don’t be afraid. Most importantly, build your faith in God, he will never fail you. I’m thankful to God that I’m still fighting and thankful I have met wonderful people during this journey of my spirituality and faith. This will be a fun event.
D: This is going to be a wonderful day. A community of people are being brought together by an awful illness, but we want to make sure everyone has fun. None of this can be accomplished unless we go out and do these fundraising/awareness walks. If people aren’t aware of the condition, we have to make them aware!
B: This isn’t about being able to walk. I can walk, but walking is an issue and I will have my decorated wheelchair. The first RSDSA walk I attending was in New York City 2 years ago. Because of the distance, traveling was difficult. Yet meeting others with the same condition brought so much comfort and peace to me. Surrounding yourself with a sea of orange will be truly inspiration. We have nothing to lose and everything to gain, including taking charge of our health. By joining, you are not only helping yourself, but helping RSDSA to help others challenged by the same condition affecting both adults and children!
SB: If someone wants to join, but doesn’t have a team to join, could they join your team?
M: Yes! Please join us in the fight! Look for my team on FirstGiving. My team name is “The Cabrera Trotters.” You can also look me up by searching Milagros Cabrera. Let’s get walking!
B: Feel free to join my team if you don’t want to start your own. My team name is: “SEICKEL Warriors.” Remember, under 5 years old, children are free! 6-12 year olds are $10 and over 12 are $25. Online registration ends August 28 at 11:59 PM Eastern Standard Time. Don’t forget, if you can, set up a fundraising page when you register!
SB: To you, what makes CRPS/RSD awareness events so important?
M: We become educated [even more] about this condition and get the resources that we need to cope. We meet other walkers and form connections.
D: These walks bring everyone together. It helps people with CRPS/RSD not feel alone. We can make a difference within our own community!
B: These events help us explain to family, friends, and the medical community that CRPS is a real medical condition deserving of support and education. CRPS is a complex disorder that requires a team approach to treat. Events enable CRPS patients [to come] together. They understand your challenges of living with chronic pain. These events help break some of the myths and stigmas surrounding chronic pain patients.
SB: That is all true. There is nothing like a CRPS/RSD event to take your breath away. The hope is definitely strong at these events. If someone wanted to volunteer, who could they contact?
B: They can contact me [Beth Seickel] at BSeickel45@gmail.com or at (516) 972-7087. They can also contact Millie at email@example.com
Thank you to the ladies of the Long Island Walk Committee for taking the time to answer my questions. Some of the responses were edited for clarity. Make sure to join the walk by visiting Sign up before registration closes to guarantee yourself a shirt and a special surprise. Click here to register. If you own a business, or know a business that would like to sponsor, please email Samantha at SBarrett@rsds.insctest1.com. Don’t miss out on this fantastic opportunity in Long Island. Not only will there be a walk, but there will be plenty of vendors/sponsors that could be great resources for you. There is a dental practice that treats people with CRPS, representatives from St. Jude Medical, The Coalition Against Pediatric Pain, a compound pharmacy, and more!