We always appreciate when Warriors of all ages take a moment to share their CRPS story with us.
During the 4th Annual RSDSA Long Island CRPS Walk & Expo, we heard 16-year-old Samantha Strasser, a CRPS Warrior for the last eight years, tell her story to attendees.
If you are interested in telling your CRPS story on the RSDSA blog or social channels, send us an email at [email protected].
Please consider making a donation to RSDSA today!
Written by Molly Clark for the RSDSA blog
Complex Regional Pain Syndrome, or CRPS, is a relatively uncommon condition that causes severe pain and other symptoms, usually after an injury. CRPS can last for a long time and make it impossible for someone to work. Anyone that expects to be out of work for at least 12 months can file a claim for Social Security disability benefits, including those suffering from CRPS. The money from disability benefits can help with living expenses while a person is unable to work.
Disability Benefits and CRPS
There are a lot of conditions that qualify for Social Security disability benefits. Those conditions can all be found in the SSA’s Blue Book along with the requirements that must be met in order to be approved for disability benefits. But that collection of conditions isn’t comprehensive. Sometimes people have conditions like CRPS that make it impossible to work but there is no Blue Book listing for their condition or they don’t meet the requirements for their condition that are listed in the Blue Book. When you can’t work because of a medical illness but that illness isn’t in the Blue book or you don’t meet the requirements, what options are there? The best option is to have a Residual Functional Capacity Evaluation done.
RFC and CRPS
When you submit your claim for Social Security disability benefits you can ask for a Residual Functional Capacity evaluation. This evaluation is done by the Social Security Administration to see if you are capable of doing any type of full time work. They will look at the skills that you have as well as your physical condition and the problems that you have related to treatment or the symptoms of your condition. You will need to submit medical paperwork to help them understand your limitations. If the SSA finds that there is no full-time work that you can reasonably be expected to do, then your claim for benefits can be approved even though there is no listing for CRPS in the Blue Book.
The key factor in the RFC is that the SSA must find that there is no work that you can reasonably be expected to do. If you were working in a job that required you to be on the phone frequently before you got sick but now you have CRPS and chronic excruciating pain in your arm you cannot be expected to be on the phone for 6-8 hours per day. That’s not reasonable, so your claim for benefits would be approved.
Filing A Claim for Disability Benefits
You will still need to file a claim for Social Security disability benefits if you want to receive benefits even though your condition isn’t listed in the Blue Book. When you file your claim paperwork, make sure that you check the box indicating you want a Residual Functional Capacity exam. You can apply online or you can apply in person at your local SSA office. If you are going to ask for an RFC, you should apply in person so that a staff member can help make sure you indicate that you want to have an RFC evaluation done.
Resources Found Via:
https://www.ssa.gov/benefits/disability/
https://www.disability-benefits-help.org/ssdi/qualify-for-ssdi
https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
https://www.ssa.gov/OP_Home/cfr20/416/416-0945.htm
https://secure.ssa.gov/iClaim/dib
https://secure.ssa.gov/ICON/main.jsp
This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/ or by emailing them at [email protected].
Please consider making a donation to RSDSA today!
Written by Laura Hinkle for the RSDSA blog.
On August 24, 1994, I fell climbing up to Grinnell Glacier in Glacier National Park and had a minor break my ankle. My life changed forever as I was diagnosed with RSD.
I went through the common treatments in that time frame. The only thing that I found helpful was methadone and it became my answer to my RSD pain. But by 2013, the methadone was destroying my heart. In 2014 after 20 years on methadone, I was told that if I stayed on methadone I would not live much longer, or I could detox off methadone and live experiencing more pain. What a choice!
I opted to detox off methadone and had to do it cold turkey because I was allergic to the detox meds. It was terrible! After two months, I thought the pain would once again kill me. I returned to my chronic pain doctor and he wanted to put me back on methadone in order to give me some type of life until my heart gave out. I filled the script and went home. However, after taking the first set of pills, I realized what I was doing. I had just detoxed off it and now I was actually taking it again! Once again, I stopped taking methadone and returned to my pain doctor. That was when he told me that if I did not stay on narcotics that I would not be bringing money in for the clinic. I got up and walked out of my appointment and never returned.
But now what?
I began my search on what to do. I came across PEAPure and tried it. I had some good results. I also went into counseling and learned to mourn the death of my dreams through RSD. I learned how to make peace with my RSD instead of always being in a battle with it. I learned that I had been missing a very important pain coping mechanism called my brain. My pain was still there, just as intense, but I slowly started developing a new life.
Part of my new life was swimming. I have always enjoyed swimming, though I have never thought I was very good at it. My primary doctor encouraged me to go to this place called OPC and use their therapy pool. At first I could barely last even five minutes, but I kept going back. I started to meet people and develop friendships. By the end of the first year, I could tolerate a half hour or so. The following year, I increased my time even more. One day, I took a leap of faith and went into their lap swimming pool. I swam one length. Everyone applauded for me. I was shocked at the support. They knew what a milestone this was for me.
Fast forward to August 2018 and RSD is now everywhere in my body. I am still using my walker. I am often rescued from the pool by the lifeguard, because my legs, or my body in general, just stops working because the pain is too intense. Yet, I am so thankful that I am in a safe place and around understanding people. They help me out when I need it. I also met two people who were part of the Senior Olympics and they started encouraging me to go to the next Olympics. I started training yet took it as easy as possible for my RSD. And, I continued to be rescued monthly.
2019 has been a game changer for me. It started with me landing in the hospital because in January, I fell from the pain and didn’t regain consciousness for about eight hours. But in April, I felt strong enough to no longer use my walker. The pain was still there, but I was physically stronger. In May, I walked the first mile I had ever walked since August 24, 1994. This was a big deal for me as I could not even walk to my mailbox in 2017! I just started slow. Halfway to my mailbox, and kept increasing the distance.
I was still being challenged to do swimming in the Olympics. My problem is that my pain skyrockets with vibrations. In the water, the vibrations were bruising my entire body. I was scared that my body would give out and I would have to be rescued again. I was going to dive into the pool, and even though it was off the side, that “smack” into the water was sometimes paralyzing me. I also had never competed in any athletic event my entire 59 years of life. I was terrified. I had a long list of reasons not to participate.
My new friends, like Lisa, kept encouraging me. She told me that life has opportunities in it and it was up to me if I seized them and lived in that moment for all it had to offer or if I declined the opportunity. I knew that RSD had taken away opportunities in life, but maybe it was time to do something different like rely on people if my pain went out of control and seize the opportunity that was before me. Therefore, I signed up for the Olympics in July. I knew that if I decided not to go, the cost would be a donation to them. By the end of July, once again, my RSD was so flared that I could barely walk or do much of anything.
Fast forward again to August 12, 2019 at 8:00 in the morning. I was warming up for two swimming competitions at the Michigan Senior Olympics. It was all just blowing my mind. I dove in at about 9:15 AM for the 50-meter breaststroke. I dove in again at about 11:15 for the 200-meter breaststroke. I was high on adrenaline and competing in my very first athletic competition. Yes, I hurt like crazy. My RSD was not happy with me. And yet, I was still doing it. I was swimming in the Senior Olympics. Much to my surprise I received a silver medal in the 50 and a gold medal in the 200! I had won two Michigan Senior Olympic medals! I was blown away.
By the time I got home, I could barely move and by evening, I could not move. The last week has been filled with extra intense pain and I am smiling inside and out. See, RSD took a lot of things from me (as it does anyone). For the first time, since August 24, 1994, I am getting a life back. Yes, it is a different life than I ever thought, but it still is a life… a life that I can call good. The pain is intense, and I am learning how to have an intense life anyway. It blows my mind that I swam like I did. It blows my mind that I actually walked a mile even though it took me 24 1/2 years to do so.
This week, I will have had RSD for 25 years. Every day I hurt and wonder how I will get through the day. And yet, now I have learned how to challenge myself in small opportunities that accumulate into big adventures. I have been able to develop a new life with RSD that I keep tweaking daily. I keep looking for those opportunities now that I can work towards obtaining. I have learned my brain has just as much to do with my RSD as my body.
My newly found friends who are swimmers ask me what my goals are for next summer. My response was that I hope to try kayaking even though I have no idea how I will ever get my legs into the kayak. I also want to try paddle boarding, but I have no idea how I will ever be able to stand, and even fall into the water with my RSD taking over my body. My friends clarified their question by asking me what I would be doing for swimming. My response was simple: get physically stronger and swim faster by swimming more effectively. I was told that next summer are qualifiers to go to the National Senior Olympics where all the winners of each state come together to compete. My friends want me to attend the Nationals. I explained that my RSD does not permit me to travel more than several hours in a car, and there is no way I can go on an airplane as there are way too many vibrations. I live in Michigan and the Nationals are in Florida. They looked at me, smiled and said that I never thought I would be able to swim in the Michigan Senior Olympics either!
Please consider making a donation to RSDSA today!
Have you heard? RSDSA’s 2019 Longest Day of Golf (LDOG) event will take place on Sunday, September 30th!
LDOG is a one-day event to raise funds for RSDSA and bring awareness to complex regional pain syndrome best known as CRPS. This year, we will once again partner with prolific golfer and CRPS advocate, Josh Rosen. Rosen, who does not have the syndrome, decided to participate after learning about both our organization and CRPS.
“Like many people, I didn’t know much about CRPS before connecting with Hank Luddington, co-president of RSDSA,” says Rosen. “I love that I can use my golf ability to help people with CRPS. My goal is to help RSDSA fundraise enough to help more people get just a little bit of happiness or relief.”
During the LDOG, Rosen will complete as many rounds of golf as possible in 12 hours. Virtual participants are then able to make a pledge for each hole that Rosen completes or make a one-time donation. Pledges and donations can be made before September 30th.
RSDSA also encourages participation at a golf course in your community. Each year we have teams across the country comprised of friends, family members, and colleagues who are able to make a one-time donation or a contribution for each hole he/she plays. Please reach out to us if you need assistance or resources in order to secure a golf course in your area.
Rosen is looking forward to beating last year’s goal in an effort to help RSDSA even more.
“The Longest Day of Golf was incredible last year,” says Rosen. “I had no idea how I would hold up through so many rounds of golf. I had a goal of completing 70 holes, but I surprised myself by playing more than 100 holes. This year my stretch goal is 144! Every single dollar donated through the Longest Day of Golf helps RSDSA do that. Let’s reach that $50,000 goal!”
For more information on the Longest Day of Golf, please visit the event page.
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 Tracy Geer and I’m the RSDSA Office Manager.
How long have you been with RSDSA?
November will mark nine years at RSDSA!
What is your favorite part about working with RSDSA?
My favorite part about RSDSA is working with Jim Broatch, our Executive Vice President and Director, and when a Warrior thanks us for helping and the information we provide them.
What is your favorite quote?
My favorite quote is easily, “May the road rise to meet you, may the wind be always at your back.”
What are you passionate about?
I’m equally passionate about my husband and my family.
Where is your favorite place in the world?
My own backyard or anywhere in or on the water!
What do you enjoy doing in your free time?
When I’m not working with RSDSA, I enjoy sailing, camping, and cruising with my husband!
Keep an eye on the RSDSA blog for more from our team all summer long!
Written by Drea Tunstall-Dooley for the RSDSA blog.
In 2007, I was 40-years-old when my life was permanently changed. I was going to get medicine for my friend who could not go outside because of her health. As I was crossing the street, I got hit by a car and ultimately broke my tibia and fibula in my left leg. Had I knew that I would never be the same again, I probably would have opted against surgery.
I had a rod and for pins placed in my leg, and things seemed to be progressing at a normal rate until I suddenly started going backwards with my pain. Living in New York and being on Medicaid, I do not feel the doctor really cared about my health. I would tell him that I was in pain and he would say, “You should not be hurting like this,” and give me Tylenol. He believes I only wanted pain pills, but that was far from the truth. I just wanted somebody to help me. A few years later, I married my husband and moved to Maryland. He took me to pain management doctors in 2012 and the doctor said I had complex regional pain syndrome. Even though I did not know what that was, I was just relieved to have a diagnosis and not feel crazy anymore.
The doctor said I will never get better, but did not say I would get worse.
Today I have learned to live with daily pain. A normal day for me is meds, meds, and more meds. I have pain meds to get me through the day, and Gralize to help control the CRPS. When I wake up, I try to do as much as I can before I start swelling, hurting, and my ankle starts changing color. Before my injury, I was a super active person, performed ballet, and loved walking. I walked everywhere. Now, I dread doing anything, but I cannot just sit still.
I know if I walk too much, even with my cane, I will still hurt. My leg hurts if it rains, and if it is cold outside, it gets cold quicker then the rest of my body. I cannot stand still for a long time, and I am very restless at night, so many times I find myself sleeping during the day. I have had injections to help with the pain and I try to relax when I can. I have four of the best encouragers outside of my husband and, thankfully, he is so understanding. My best pain relief (do not laugh!), but my Marty knows when I hurt and he ever so gently massages my ankle with warm licks.
I still love to walk, and I try to take my furbabies for a walk daily. Because I hurt so much, I stay to myself a lot and watch TV with my legs up. I have many sleepless nights due to pain. I have what I call my barometer in my leg, as I can tell anyone when it is going to storm.
I wish that people understood that just because I may look like I am fine, I am not. I wish they knew what I did to be able to do what is easy to them, like walk up the steps or walking from the parking lot to the building. I wish they would realize how much we lose with this diagnosis. I wanted to do competitive body building, but cannot because I cannot train my legs because of pain. I can no longer dance, run or walk. Ultimately, I miss life before CRPS. I also wish non-CRPS Warriors would stop making mean comments. I would not wish one day in my life on my worst enemy
To the new Warriors, find one thing that makes you happy and do it. If you have that one person in your life that loves you regardless, appreciate them.
If you are a veteran Warrior, know that I love you and that you are a champion in my book. You are not broken. Know that you are not alone as us Warriors are in this battle together.
To end, I want to thank my husband Mark for loving me when I thought I was broken and unloveable and when I cry for miss being pain free. I also want to thank my furbabies for being there for me when I am in pain.
Please consider making a donation to RSDSA today!
Written by Karen Richards
The shower water is too hot, but I dare not turn it down because after two minutes it will become cold. As predicted, within a minute, the hot water has vanished, but I have to suffer in the cold until my conditioner is washed down the drain. Once the torturously icy shower is over, with my body wrapped in a towel, I walk two steps into my living room/bedroom and sit on my bed. My head hurts, my body hurts, everything hurts… I am not a stranger to any of the awful things happening in my body and I pray that tomorrow will be better. I shake my arms hoping the shooting pains going down them will cease, but they are difficult to even move. I do what I normally do, I ignore it and so I can sleep I take some pain medication, drifting away into oblivion.
I was in Madrid, Spain; hundreds of miles away from anyone who could begin to tell me what was wrong. At this point, I had missed about 50% of my classes. I slept for the majority of my days, and I experienced so much pain. I felt like the excuse “I had another migraine” was getting old for my teachers and even though it was the truth I was worried that they wouldn’t believe someone could have so many migraines. The previous semester, I needed a shunt revision and that had helped with my headaches, but as the high intracranial pressure began to disappear from my life, a new monster came out from under my bed. I cursed my body for failing me over and over again and wished for just one “normal” day.
The concern should have started a lot earlier than it did. I finally went to the hospital when I began to have severe pressure at the base of my skull that made me feel like I was six years old again, hanging upside down on the monkey bars. All the blood unable to leave my head made me feel like there must have been something seriously wrong. I was worried because of the multiple intravenous stents in my Jugular veins. I thought that there must be a clot in one of them and that was why it was hurting so severely. A problem with my stent would not only explain the migraines, but would also explain the horrible memory issues, cognitive deficits, and debilitating fatigue I had been experiencing every day. After a long day in two different emergency rooms, they sent me home with the consensus that I did not have a clot in my stents. I was thankful I didn’t have a clot, but I was confused as to what was going on with me. They told me I was fine, but they had just looked at the stents, nothing else. After the whole fiasco, my symptoms only worsened… At the time I didn’t think about my arms not working, the nerve pain which felt like electric shocks shooting down my arm, my leg weakness, my recurring UTI infections caused by a neurogenic bladder (apparently with no cause), or my dizziness. I attributed all these things to my having a chronic illness that affected my joints and nerves.
Mainly I thought I was fine because doctors told me I was. Many doctors (in the United States and in Spain) overlooked everything I said and made me feel like a crazy person. They didn’t look at the whole picture. Yeah, they checked my stents, but they didn’t look at my previous fusion or anything else. The one doctor who did think my fusion could be the problem didn’t speak a word of English and I had gone to the appointment alone so I had nobody to translate. I left that appointment confused as to why I had just gotten trigger point injections in my muscles and occipital nerve blocks. I remember thinking “they said nothing is wrong, you’re just being a baby,” and “Karen, you’re just crazy.” Things like this filled my head, but little did I know each day I was moving closer to death. I told myself I was crazy over and over again. I told myself that there was no reason for all the weakness and nerve pain, just me being lazy and normal nerve pain from my dislocated shoulders.
As the pain and the fatigue overtook me I started having other strange problems. I was choking constantly on my food and medications, my voice seemed to get quieter every day, recurring UTI infections for seemingly no reason, I was having to take my migraine medications as often as I could without giving myself rebound headaches and when that didn’t help (which was a majority of the time) I had to take pain medications that made me sleep and unable to function. The list of medical issues that was going on is endless.
I felt that I was caught between a rock and a hard place. Here I was, doubting that I should even be attending university because every day was a marathon and getting to just one class was the finish line. The difficulty I had was that there was more after the finish line: papers, tests, quizzes, assignments, readings, etc… School felt like it was becoming more and more impossible and my attendance rate dropped down to 40%. All of this started in January. My mom came in February and took me to a spinal specialist in Barcelona. The spinal specialist told me that my scans from 2015 showed evidence of craniocervical instability and that based on these scans, I would probably need another fusion soon. I asked him if we could do further testing, but he told me that I must not need surgery because I could walk and could live by myself and somewhat attend school.
I left the office feeling angry, but there was nothing that I could do about him not wanting to do the testing. I was now convinced that my neck was the problem, but due to fear I didn’t express the extent of my suffering to him that day. A few days after the appointment, my mom returned to Boston. I was again alone feeling nothing other than frustration with my body. Time passed and my health deteriorated. Only a few weeks after seeing the specialist in Barcelona, my neck began to spasm more and more and my headaches began to intensify; my attendance dropped to about 30%. I frantically sent emails to the specialists office and got a prescription for a neck brace. The world continued to spin around and as I fell behind everything else moved forward. I was frantic about school and all of my missing work. I was on disability and I had accommodations with my school, but I still had anxiety about what my professors would think of me.
I was in the middle of one of the most frustrating situations I have ever faced. I felt so sick every day, but they told me nothing was wrong. The truth is, we had no idea what was going on with my health and although I was convinced it was my neck, I still hadn’t heard back from the office in Barcelona about scheduling testing and an appointment there. I tried my best to continue on with my life and although I was sick, I was so happy. I was in a foreign country with a beautiful culture that I love so much. I had an amazing boyfriend who helped me with everything. I lived in Sol, which is the center of Madrid. I loved all my classes (even though I could barely attend them). I had amazing friends who were always there for me whenever I needed them. I had a family that loved me, taught me Spanish, and accepted me as if I was their own daughter. I didn’t listen to my body because I didn’t want anything to get in the way of this happiness. I had built my own life in Spain, I did this despite the many doctors who told me I would never be able to be independent. I was so proud of myself.
The inevitable finally happened; I fell apart and I lost it all. I hadn’t been able to go to school for two weeks. One week was our vacation week and the next week I slept from 4PM-10PM every day and hadn’t made it to class at all. I remember it so clearly… It was a beautiful day, which I spent it in bed until I heard a knock on my door. I jumped up with excitement and ran up the stairs. I opened the door and practically shrieked with joy, “hey baby!” I wrapped my arms around him and looked up; in that moment something went very wrong. Suddenly, I couldn’t stand without his help, I could barely get down the stairs, my arms went numb, my head felt horrible, but most of all my neck felt horrible. I immediately crawled into my bed and folded myself into a fetal position; I was in so much pain I couldn’t think. I picked up my phone and sent an email to my doctor in Barcelona telling them what had happened; they responded right away with an appointment time.
Barely able to walk, I got on a train to Barcelona alone. I couldn’t sit on the train, but thankfully by this point I was fluent enough in Spanish to explain to the ticket man what had happened and that I needed two seats so I could lie down. I was too dizzy to sleep on the train and the three hour trip felt like a three year expedition.
From the train station, I went to go pick up my dad at the airport; when I saw him I was so relieved. The next day I went to the hospital and got the testing and the results were not good. They showed that I had severe instability in my neck and my previous fusion. I had no other testing besides the Fluoroscopy (a type of X-ray) and from that it was clear I needed a second fusion. The plan was to fuse me from the bottom of my first posterior fusion, which didn’t seem to have movement to the bottom of my neck at T1. That was the plan, but it was also before we got the price estimate. The price of the surgery was going to be 71,500€ ($80,464.34) and my family does not and never will have that kind of money.
Not even two weeks later I was getting on a plane. I looked out the window and as the plane sped up tears fell down my face; they stung like acid would. The nose of the plane lifted into the sky and Spain was left behind. That day I lost everything that I had built. When I arrived in Boston I lost my boyfriend along with his family, I lost my apartment, I didn’t get a chance to finish my classes and had to take incomplete grades, I noticed when meeting new people they extended their hands instead of giving me a hug and a kiss on the cheek, my new skill of speaking Spanish was absolutely useless and it took me forever to convert back to only thinking in English, but worst of all I lost my independence.
A week later I was in a cold doctor’s office in Maryland to see a specialist of spinal problems that occur in people with my disease. He did a lot of testing and what he found was that I was knocking on heaven’s door. The tests showed a lot of things. Firstly they showed that my swallowing reflex was “that of a 90 year old”. Secondly they found that the screw located at C2 had cracked and broken while the other one had moved out of place. They were both migrating into my esophagus. Thirdly I had ruptured discs and severe instability. Fourthly, my previous fusion had failed and the vertebrae along with the hardware were moving. The conclusion was that I needed surgery or I was going to die very soon. The surgery I needed was not an easy surgery and one of the most complicated surgeries that my surgeon has ever done. There were multiple steps to the surgery.
First, they had to take out the broken hardware at C2 (the first vertebra you can feel when you touch your neck) along with the rest of the hardware from the failed fusion, which stretched down to C5 (my fifth vertebra). Normally this wouldn’t be extremely difficult, but my screws were anteriorly placed meaning he had to move my compromised airway out of the way, which was going to cause an enormous amount of swelling. Second, they had to fuse me anteriorly at C5-C6 because the amount of movement there was too much to hold up with only a posterior fusion. After they did that in the front of my neck, they were going to flip me over, remove the hardware I had in my skull stretching to my second vertebra because there was too much movement between my second and third vertebra for a connector to hold. After removing the hardware they were going to place new hardware stretching from my skull to the bottom of my neck. Lastly, because my T1 had minor instability (that didn’t require fusion) they attached an extra ligament between the bottom part of the fusion and my T1 (the top of the mid-back). My heart stopped when he explained the surgery and what was going on with my body. I feared for my life understanding that there was a possibility I may not wake up one morning. I waited three weeks for the surgery and they were the worst three weeks of my life. I felt that I had nothing to live for and on the second week I had a nervous breakdown. All I wanted was to give up. I was only alive because of my neck brace, my 24 medications, and bed rest. I was probably going to die anyways and because I had lost everything I felt that I had nothing to live for. Thankfully, my mom convinced me to wear my neck brace and to take my medications.
The surgery took the two hands of Dr. Henderson and his partner Dr. Rosenbaum. There were five hours of cutting time and seven hours in total. They found that my spinal cord was compressed and after testing the function of my brain stem, the electrical impulses were not normal meaning my brainstem was also compromised. When my doctor came out and spoke to my mother, he told her if I had slept wrong, with the condition that my neck had been in I wouldn’t have woken up.
All of that was over now and things could only get better. I was kept in a medically induced coma for two days after the surgery due to swelling in my airway. When they woke me up with the tube in my lungs I remember seeing so many people in the room. I didn’t know it then, but a trauma surgeon, criticalist, a respiratory therapist, and Dr. Henderson were all present; they weren’t sure if I was going to be able to breathe on my own and were ready to perform a tracheostomy if I couldn’t. They pulled out the tube and I took a nice breath of fresh air. It sounded like I was snoring when I breathed, but I was breathing on my own. After I woke up, my throat was so swollen I was unable to swallow my own spit having to have nurses and my parents constantly using the suction. I was barely able to speak for the first three days after, but on the fourth day I took a turn for the better and began to dramatically improve. I was talking, able to swallow most of my spit and even swallowed a sip of water. I also got out of bed that day and went to the bathroom on my own after the catheter was pulled. The following day I was let out of the ICU and then within 24 hours I was able to leave the hospital. Nobody was sure how the surgery was going to go and there were so many uncertainties, but as my surgeon said my speedy recovery was surprising to everyone in the best way.
It took me three weeks to be able to swallow solid food and I still can’t eat most foods or swallow any pills (all my medications I’ve been taking in their liquid forms). Still, I feel so much better than I did before surgery and I am only thankful. My health may have stolen the life that I built in Spain, but it did not steal my life. Thanks to Dr. Henderson I have been given the chance to build a new life.
Every morning I wake up early to watch the sunrise. I watch the colors wash away the blackness of the night as they fill the sky with a bright burning fire. Every morning joy fills my heart as I walk outside and take a breath of fresh air. I look at the flowers, the green grass and the blue sky and am always amazed by how beautiful this life is. Every morning I remember that girl who felt so hopeless as Spain disappeared below her as she flew away. I remember the pain, the sadness, the loss, and I am thankful for it all. Because I realize now that I didn’t lose anything, rather, I gained so much. I gained the opportunity to live and I am beyond thankful for that opportunity because what a beautiful world this is. I am no longer sad about losing my life in Spain because I know that when I return to complete my studies, I will feel great and be able to build something even better than what I had before. They say you don’t know what you have until it’s gone. When I was laying in bed dying I realized what an amazing life I was missing out on. Now that I am better, I realize what an amazing life I have been given.
Please consider making a donation to RSDSA today!
Written by The Color The World Orange Team
Get your orange ready! The sixth annual Color The World Orange™ for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Awareness is November 4th.
The easiest way to get involved is to wear orange and post a picture to social media with the hashtag #CRPSOrangeDay. Make sure to ask friends, family, support groups, and your medical teams to wear orange as well!
Buildings, bridges, and landmarks around the world including Niagara Falls, the Duke Energy Center in Charlotte, North Carolina, the Calgary Tower in Calgary, Canada, the CN Tower in Toronto, Canada, the Blackpool Tower in Blackpool, England and many more will be lit orange on November 4th! In addition, U.S. politicians have granted proclamations recognizing Color The World Orange Day and November as CRPS/RSD Awareness Month.
As lightings are confirmed, they will be added to the Color The World Orange social media pages as well as our website, colortheworldorange.com
We encourage the CRPS/RSD community to be creative and have fun on Color The World Orange Day! Supporters have held all-orange parties, hosted informational sessions with their doctor, and worked with local schools and businesses. Some have even hung orange twinkle lights outside their home on the night of Color The World Orange to spread awareness! A few more suggestions include:
Color The World Orange was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. It is held annually on the first Monday of November to bring together all those affected for one common goal—CRPS/RSD awareness! Let’s show the world that while we are in pain, we are strong.
The fifth-annual Color the World Orange in 2018 was the largest yet with 137 buildings, bridges, and landmarks around the world lit orange to spread awareness of this poorly understood and incredibly debilitating condition. 2018 participants included Niagara Falls, the Mercedes-Benz Superdome in New Orleans, and five billboards in Times Square in New York. With your support, we hope to make Color The World Orange 2019 the biggest yet!
For more ideas and to see a list of all buildings set to turn orange for this year’s Color The World Orange, please visit colortheworldorange.com.
Please consider making a donation to RSDSA today!
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 am Alexis Davis and I am the social media manager for RSDSA.
How long have you been with RSDSA?
I have been with RSDSA since April of this year and I have enjoyed every moment of the journey so far!
What is your favorite part about working with RSDSA?
My favorite part about working with RSDSA is learning more about CRPS, having the opportunity to tell the stories of Warriors who have the syndrome, and helping to spread awareness. This role has taught me a lot about what chronic pain sufferers, as well as the disabled, go through and how we can all assist to make their days and lives easier.
What’s the coolest thing you’re working on right now?
Since I also manage the RSDSA blog, I am always on the lookout for stories I can tell and physicians/specialists that I can interview. I have learned a lot from the stories I have read and posted so far, so I know Warriors would enjoy receiving information and updates from others they can relate to and/or learn from.
What is your favorite quote?
My favorite quote is from Winston Churchill and it is “We make a living by what we get, we make a life by what we give.”
What are you passionate about?
I am very passionate about teaching people how to use social media for good. While there can be a lot of negative aspects to the social platforms we know and love, there are many positives such as education, connection, support, and more. The RSDSA channels, especially our Facebook Page are a prime example of this.
Where is your favorite place in the world?
I just returned from a wonderful trip to Italy and I think it is my new favorite destination. Venice was my favorite city of the trip as it is amazing how a city like that could have been built without today’s modern technology. Croatia is a close second!
What do you enjoy doing in your free time?
When I do have a free moment, I love photography, running, and reading news stories ranging from tech to current events.
Share a fun fact about you. It can be personal or related to RSDSA.
This may not be a fun fact, but it certainly is a conversation starter! I ran track in high school and I was also a high jumper. I somehow managed to get a concussion during track practice while high jumping. If you must know the full story, feel free to shoot me a note. 😉
Keep an eye on the RSDSA blog for more from our team all summer long!
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 Jeri Krassner and my title is Special Events Coordinator.
How long have you been with RSDSA?
I’ve been with RSDSA for five months. I am on a steep learning curve about CRPS/RSD and I have so much more to go.
What is your favorite part about working with RSDSA?
My favorite part about working with RSDSA is meeting the individuals and families in the community and how they persevere despite their pain.
What’s the coolest thing you’re working on right now?
The coolest thing I’m working on right now is RSDSA’s Longest Day of Golf.
What is your favorite quote?
I am going to give you a quote and one of my favorite poems.
My favorite quote – Therefore, send not to know
For whom the bell tolls, It tolls for thee.
The Red Wheelbarrow – William Carlos Williams
so much depends
upon
a red wheel
barrow
glazed with rain
water
beside the white
chickens
What are you passionate about?
I am the most passionate about social justice.
Where is your favorite place in the world?
I love to travel, so I don’t have one favorite place in the world. I love Italy, England, and South Africa.
What do you enjoy doing in your free time?
I have guilty pleasures like I enjoy watching old movies, watching TV, baking and reading.
Share a fun fact about you. It can be personal or related to RSDSA.
I love watching dance, like ballet and the show So You Think You Can Dance. In my next life, I’d like to come back as a show dancer.
Keep an eye on the RSDSA blog for more from our team all summer long!
