Youth - RSDSA

From One Family to Another: A Pediatric CRPS Journey

December 20, 2016

By Guest Bloggers Bobby and Lauren Gellert

The Gellert’s daughter, Zoe, has faced CRPS head on. She has been inspired to do some great things. See what Zoe and the Gellert family are doing and what they learned about pediatric CRPS.

“Dad! You need to come home. The doctor said nothing is broken or torn, but I still can’t put my foot on the floor. It feels like someone is sticking a knife through my heel and it’s burning inside”.

These were the words of our 11-year-old daughter, Zoe, who the day before was involved in a crush injury to her right ankle. Zoe was immediately non-weight bearing and was describing pain symptoms that made no sense based on the findings from her X-rays and MRI. She was diagnosed with Complex Regional Pain Syndrome six weeks later. For my wife and I, this was the first moment in our lives that ‘brought us to our knees’. Having a child that is constantly in pain with symptoms that got worse over time was a devastating situation that immediately threw us into acute survival mode to obtain the best and most immediate treatment for our daughter.

Zoe is very intelligent, passionate and determined – a born leader. Over the past nine months since her injury, Zoe has learned an incredible amount about herself and her disorder. Today, although Zoe is fully functional and playing sports, she continues to manage her daily pain with techniques that she has learned and that she is enthusiastic about sharing with other kids that are suffering. Zoe is committed to creating overall awareness about pediatric CRPS and to raising money to help fund vetted treatment and research projects and to help support parents seeking financial assistance for their child’s necessary treatments. Attached below is a detailed video of Zoe’s story that we would like to share. We hope that you enjoy it and that it is inspirational for you or someone that you know with CRPS. If you would like to email Zoe, please contact her at [email protected]. We hope to hear from you!

My wife and I are very grateful that within three months of Zoe’s injury she was diagnosed, admitted into the hospital for intensive multi-disciplinary treatment and was released from the hospital walking without any support. However, the feeling of being ‘a fish out of water’ is still very fresh for us. Being thrown into the abyss of CRPS – whether during the pre-diagnosed, treatment or recovery stages – is completely overwhelming. Throughout our research, it was very important for us to consider treatment options that were non-narcotic, non-invasive – but aggressive and appropriate for a child. There were always many things to consider and every day brought new challenges. So below, we feel compelled to highlight and share what we have learned about pediatric CRPS and what has worked for us and our family thus far in our journey…

Top 20 dos, don’ts, suggestions, and practicalities for pediatric CRPS*

Do not apply ice
Do not cast or immobilize
Do not get a flu shot
CRPS can spread throughout the body over time without treatment
Emotional stress can increase the baseline pain endured daily
Blood tests do not support or exclude the diagnosis – which is clinical and primarily based through observation of a variety of classic symptoms
Thermography may be the most effective non-invasive diagnostic tool
If your child must have an IV or get a shot, use the smallest needle possible – sometimes called a butterfly needle
Discuss with your doctor administering an appropriate dosage of Ketamine along with any anesthesia during surgery
Your child must be encouraged to stay engaged in everyday life activities while in pain – endure as much daily physical activity or physical therapy as your child can tolerate
Continually touch, rub and desensitize the affected area – this will facilitate the circulation of blood and oxygen flow and eventually reduce pain
Recovery is mostly about function over pain – explain to your child that he/she will not hurt himself/herself – if your child can function while in pain he/she will feel in control of the pain and the pain level will be reduced
Do not ask your child about the pain he/she is feeling
If your child complains about the pain, be sensitive, acknowledge the pain and distract him/her with homework, chores, physical or social activity – but move on from the conversation
Your child must accept and surrender to the pain without letting the pain identify who he/she is – do not allow your child to mentally cut off the affected area from his/her body
Seek a Cognitive Behavioral therapist so your child has someone other than you to talk with about what they are going through and to learn visual pain management techniques
All family members should be encouraged to discuss with a therapist how they are coping with the affected family member’s diagnosis
Do not allow CRPS to take over the household or to be the main topic of conversation with family, friends and work colleagues
Consider Osteopathy and Homeopathy as regular, not alternative, treatment options
Five books to read:
Get Out of Your Mind and Into Your Life – Spencer Smith and Steven C. Hayes
Conquering Your Childs Chronic Pain – Lonnie K. Zeltzer M.D.
The Mind Body Prescription – John E. Sarno M.D
The Power of Now – Eckhart Tolle
Fulford’s Touch of Life – The Healing Power of the Natural Life Force – Dr. Robert Fulford

*We are parents, not doctors; hence, we are not making any representations or warranties regarding the above information which is based solely on the results of our own research and experiences.

As you saw in the video, Zoe created a GoFundMe site. Please click here if you are able to make a tax-deductible donation and/or please share the GoFundMe site on your Facebook page or any other social media outlet. We thank you in advance for your support and for your donation.

We also have an Instagram account at @Zoesheroes! It would be super if you would follow us on our journey!

With appreciation and gratitude,

Lauren and Bobby Gellert

Please consider making a donation to RSDSA today!

Feeling Good (Again) at CCK’s Pain Week

August 2, 2016

By Samantha Barrett for the RSDSA blog.

Last year, you may recall that I had my very first camp experience at the Center for Courageous Kids in Scottsville, Kentucky. I liked it so much that I went back to represent RSDSA again this year! If you thought the inaugural year was amazing, wait until you hear about this year. Thank you to The Coalition Against Pediatric Pain for allowing me to tag along with you. Another thank you to the US Pain Foundation and Rock Out to Knock Out RSD for co-sponsoring this camp, too!

Last year, we had about 19 children total, which was a great first year! This year, we had 49 children total and then parents/guardians. We completely filled the camp! That is monumental. We had people travel from all over the country to be at camp. One family even came from the Republic of Georgia. Children from ages 2 through 17 were at camp. As much as I hate to see children living with chronic pain, it is so nice to see them all come together. When it finally occurs to them that these other kids and families understand them, the look of relief is priceless. Here, these kids don’t have to worry about being judged for being able to walk at one moment and having to use a wheelchair the rest of the day. There is a general understanding. All they have to worry about is being kids. Children that are diagnosed with chronic pain syndromes at a young age have to grow up much faster than most other children. They have to make sure they see their doctors regularly, take their medications, go to appointments, do their homework, communicate with their school, try to stay in touch with friends, tell their parents if something feels “off,” all while learning to live with these conditions that their peers don’t understand. Some of these kids are even still trying to understand what they are going through and what is to come. Chronic pain is a much more complex subject to grasp than most people believe.

To say that camp is life changing is an understatement. Throughout the week, I was able to capture some of these memories in photographs. But for some of the memories made at camp, a picture wouldn’t do it justice. Our International Campers of Mystery week started off with getting to know one another and getting to the lodges. The first day was such a happy reunion for the families that were able to come back after last year. The new families were able to start talking to each other and the veteran families to get an idea of what to expect. I was personally excited to see the people I met last year that were coming back. I was greeted with hugs and tears from so many of the parents. Seeing the kids from last year that suddenly looked so much older was mind-blowing. Oh, how a year can change so much! The new families got to know me, too. I was just as excited to get to know them and help make their camp experience enjoyable. I drove some of the families to their lodges on a golf cart with the help of my new friend (and TCAPP volunteer) Marissa as well as CCK staff member, Alvin. We had an orientation in the gym, where the rules were reviewed and campers and their families were taught the CCK cheer, which we would hear at least eight times per day. One of the things that I do love about camp is that the families have to stay with their camper(s). While this rule may be enforced because of liability issues with camp, I have a completely separate reason for loving it. Having the families be with the children allows them to see their kid as a kid again. It is such a rare and beautiful moment that it would be such a shame for it to be lost. Being able to see your child be accepted and surrounded by understanding must just take their breath away. While I may not be a parent, it takes my breath away and puts tears in my eyes when I get to witness these children bond. Day One ended with time in the Fun Center (bowling or playing arcade games) or making s’mores out behind the dining hall with the camp’s general manager, Ed, and his dog, Ollie!

Camp flew by so fast. Day Two featured a CCK staple event- the Messy Games! The goal is exactly what it sounds like- the lodge that gets their campers the messiest wins! The kids and their families get to go to all of the different stations that are set up, such as the shaving cream boat, the mud pit, and more! Everyone has a limited time to get each other the messiest. This year, yellow lodge prevailed and got messiest lodge. After, the kids all rinse off with buckets of water. But this year, there was a fire truck that was there to spray all of the campers. After a day of extreme heat, this was a much needed luxury! Something fun we added this year were camper superlatives. Marissa and I had been brainstorming things that we could do to make camp even more fun, and that’s what formed. Each lodge had to assign a superlative to a group of campers each night (no child was left out). When the child’s superlative was announced, they were able to come up and pick out a prize while getting interviewed by Emily, one of the awesome CCK staff members that keeps everyone going. Moving on from there, Day Three offered up another camp staple- Stage Night! Any kid (or group of kids/counselors/parents) could participate. Whether they wanted to sing, dance, act, play instruments, or eat an ice cream sandwich to dramatic music, this was their time to shine. We laughed at the silliness, cheered on the shy campers coming out of their shells to perform, and cried at some of the most moving performances. These kids are so amazing. Day Four we had quite a bit of rain, so a lot of the outdoor activities were cancelled. It ended up clearing up in the afternoon, but since the ground was muddy, we had the camp movie night inside. We watched Zootopia, which I will admit is one of my favorite movies. Kids laid on bean bags, quilts, pillows, and more in the center of the dining hall while watching Zootopia on the big screen.

I should add that the kids did much more than just these major activities. All through the week there was woodshop, beauty shop, cooking, arts & crafts, swimming, rock climbing, horseback riding, fishing, boating, bowling, and more available. Each lodge had a designated time where they could choose from three or four options before they switched. There was always something to do. But if a child wasn’t feeling up to it and need to rest, they could go back to their lodge and nap or just get away for a moment. Every day had a scheduled “siesta” as well.

Day Five was the hardest day- the last day. We watched a slideshow prepared by camp photographer Maryanne and there were tears all through the room. Then the families had to pack up their lodges, clean up, and say goodbye. It is amazing how one week can turn a group of strangers into a family. Tears, hugs, and “add me on” insert social media network here were not in short supply. Families were taking pictures together, kids were taking pictures with friends and counsellors, and even the parents were taking pictures together. It is never easy to leave. It’s a bit like Cheers, but instead of wanting to go where everybody knows your name, you want to go where people know what you’re going through. These kids and their families made lifelong friendships. I am so honored to be a part of such a wonderful week.

CCK is honestly just such a wonderful place. Everything is accessible and they work to make everyone feel included, whether it be to try to help make sure someone with severe food allergies gets to eat, or someone with severe mobility issues gets to ride a horse. The counsellors all seem to be interested in the medical field. One of the counsellors even wants to be able to run a camp like CCK (or to be the future manager/owner). These are dedicated young adults that want to make a positive difference in the lives of children (and families) that are facing obstacles that some people cannot even imagine. The staff is fantastic and so welcoming. If you’ve been there once, they’ll probably remember you. Being able to expose all of the counsellors and other staff members to chronic pain syndromes is a great thing. Why? Because, these are the people that are your future doctors and nurses. The more they see and work with chronic pain, the more they’ll be interested or at least able to recognize various chronic pain syndromes. But don’t just take that from me. One camper said that this camp was better than a Disney Cruise. Another camper said that camp saved their life. I have to say it again, pediatric pain camp at CCK is life changing.

Here’s hoping there is a next year. Thank you, Sue Pinkham, for making so many people’s dreams come true. Thank you to CCK, TCAPP, US Pain, and Rock Out to Knock Out RSD as well. RSDSA is so happy to be in such great company and to be a part of something so great. Our slideshow should be up within the next week or so. Be on the lookout!

CCK, how do we feel?

The True Definition of a CRPS “Warrior”

May 17, 2016

By Anna Evenosky for the RSDSA blog.

What is the true definition of a CRPS Warrior?

We refer to ourselves all the time as “CRPS Warriors.” Although, what does it truly mean to be a warrior? Warrior is defined as, a brave or experienced soldier or fighter. So yes, we do fit under this definition considering every day we have no choice but to fight. We fight to keep our function and fight to keep our spirits bright and alive. Recently, I have had endless things go wrong for me. On top of Complex Regional Pain Syndrome (CRPS), I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), my depression came on full force, and my anxiety on how I will go on temporarily crippled me. I felt that I had every right to give up, I asked myself why I must endure so much physical and mental pain, as I’m sure many of you have.

Although, being seventeen years old, I’m convinced that my purpose here on Earth is to be a crutch for the chronic illness community, to support them, and to raise awareness. This task always lingering in the back of my mind gives me the ability to power through just about anything life throws in my direction. After all, I’m on a mission to make a difference and there is not anything or anyone that can stop me.

So here I am, I’m on homebound, and many days I don’t even feel well enough to get out of bed. Although I know that you always must work with what you got. My brain wandered trying to come up with a hobby that could keep me occupied as well as my spirits high. I tried a few things out, some I found enjoyable and some I did not. One day it finally hit me that I wanted to be a writer. I started out small, writing blog posts that never actually went out to anybody. Then that small little hobby of mine grew big. I started writing for “The Mighty”, a medical blog with around 80 million readers, this allowed for several of my articles to go viral. Then I began writing for the RSDSA (Reflex Sympathetic Dystrophy Association). I started setting goals that seemed like the impossible. I’m happy to say that despite everything life has thrown my way this past year, I have been hired as Editor in Chief and a writer for “Odyssey.” This is a paid position at Odyssey with internship credit and the ability to walk into college with a professional portfolio. In addition, at seventeen years old I will have my very own article based on invisible illnesses published on Yahoo. My favorite thing about this hobby of mine is the feedback and endless thank yous I receive. There is nothing more rewarding then knowing the impact my words alone have on people. My fight and mission to help the CRPS community will go beyond this. I just recently committed to Rutgers- Camden as a biology major as one of many steps to pursuing my goal of becoming a physical therapist. I am now more motivated than ever to become a physical therapist that patients can whole-heartedly relate to and look up to.

So, when everything seemed to be going wrong things managed to turn around and began to go right for me. So, yes, I’m a warrior, as I’m sure you are too. But what truly makes us that fighter is the ability to push through any hardships that life throws our way and do it with grace. With grace to show that it is possible to find positive in every negative. We do it with a smile on our faces to mask the pain, maybe in hopes of avoiding making other people feel uncomfortable or maybe in hopes of hiding what you don’t want to be known.

So, to all those warriors out there who have every right to give up, props to you for pushing on. Your strength is an amazing thing and not something that many people are able to say they have. I have people say all the time “I don’t know how she does it.” I do it because I rather push through and make the best out of my situation than sit back and ask: “Why me?” and grieve about it. This life we live is too precious and short to be upset over the unchangeable. The ability to be positive through the negative, to be happy through the sad, to smile through the pain, and to be successful when life has set us up for failure that is what makes each and every one of us a warrior.

Anna Evenosky: Just a teenage girl trying to make a difference…writer for Odyssey, The Mighty, and RSDSA.

5 Do’s and Don’ts When It Comes to People with CRPS

March 8, 2016

CRPS Do's and Don'ts are particularly useful for friends/family of those living with CRPS/RSD — Anna with a friend that follows the Do’s and Don’ts

By Guest Blogger Anna Evenosky

So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want from you. I hope these 5 Do’s and Don’t give you more insight as to how you can help and comfort us.

DO: Ask us how we are doing.

Our CRPS is something that is always on our mind and we appreciate knowing that somebody is thinking about us. You don’t need to worry about bringing up a sensitive topic because, chances are, we have already been asked what you are wondering. I know you may feel uncomfortable approaching the situation, but with it going unspoken about it is just as uncomfortable! You asking us how we are doing and if anything is new shows us that you care and gives us somebody to talk to.

DON’T: Ignore and fail to acknowledge that we are going through a hard time.

We know you may feel sorry and not know what to say or how to handle the situation. You not acknowledging the situation makes us feel hurt and abandoned. It makes us wonder how we are supposed to handle the situation on our own without our loved ones support.

DO: Listen to not only the happy parts of our illness, but the sad parts too.

Use the stories you hear from us as knowledge that you can then share with others. Awareness is key; knowing that you are helping spread awareness is one of the most comforting things you can do for us.

DON’T: Disregard the “ugly” parts of our illness and only spread the happy parts.

This is hurting us in so many ways. It stinks but these days people need to see the bad in order to support you and have sympathy (although sympathy isn’t what we are after). It is so often that CRPS gets brushed aside and people don’t believe how much we suffer. This is because you are only aware of the person who benefited from a treatment, the success stories, or the smile that we always have on our faces. People are not aware of the person who is bed ridden, has lost all function, or breaks down more times than one can count in a day.

DO: Offer us your help when we are not feeling well.

Even though there is nothing you can do for us that will cure us sometimes just knowing your willing to help is enough to put a smile back on our face. Please know that any way you help is benefiting us, no matter how big or small.

DON’T: Say “I’m sorry” and give up on helping us because you think it is useless.

When we text you saying we don’t feel well, take that as an opportunity to help us or take it as a call for help. Sometimes just having your company is enough to put a smile on our faces. Although when you give up on helping us and stop offering us help it makes us feel as if we should give up on feeling better.

DO: Offer to come over and lay in bed with us or make us something to eat when we unexpectedly cancel plans.

So often, our needing to cancel last minute is seen as not wanting to spend time with you. In reality, we are heart broken that we can’t get out and do something fun with you. We would still LOVE to have your company even if it means you sitting next to us as we doze in and out of sleep.

DON’T: Accuse us of not wanting to hang out with you when we cancel unexpectedly.

We are already upset enough that we can’t see you. When we see that you are annoyed or disappointed with us it makes us fall into a deeper state of depression. Please know we really want to spend time with you and that we are in a constant fight with our body!!!

DO: Tell us that you can’t understand completely but are always there for us and will do anything to understand better.

It is ok to tell us you can’t relate. That doesn’t make us feel sorry for ourselves, it actually makes us happy since it shows that you believe that what we are going through is very hard. We love to know and it’s comforting to know that you will do anything it takes to understand or even get a glimpse of what our life is like.

DON’T: Tell us it could be worse and not support us.

You have no idea what we are going through and are not in a position to tell us that it can be worse. That is the most disheartening thing you could tell us. It shows us that you don’t believe how much we suffer. Please remember that different hardships come with different illnesses and no two are comparable. This comment is not comforting to us.

Next time you find yourself in a situation where you are not sure what to say or do, please remember these 5 things. These can make a huge difference when it comes to our relationship with you and our overall well-being. We hope this helps explain everything a bit better and gives you a glimpse of our side of things. Thank you for supporting us and if you are a loved one reading this- thank you for making an effort at helping us.

Please consider making a donation to RSDSA today!

RSDSA Spotlight: How CRPS Taught Me to Live In the Moment

February 9, 2016

By Anna Evenosky, Guest Blogger

Rewind to that time that is so vague in my head that I can barely remember it. The time of my life when I was as free as a bird spreading its wings for the first time. The time of my life when I didn’t know CRPS existed.

I can’t recall what being pain free feels like. Although, I can recall the happy times I would be lying if I said I didn’t miss. Going from a life where my biggest worries were passing a class, or getting something done on time, to a life of chronic illness, was an adjustment to say the least. Something I wasn’t exactly ready to take on. Although, I’m sure at no point is anybody ready to handle watching their life seemingly crumble to pieces.

Reflecting on my life before Chronic Illness is something I do more often than not. I always find myself coming to the same conclusion and same regret – why didn’t I appreciate how good I truly had it? Why is it that we don’t know what we have until it’s gone. No matter how many people claim that they don’t take for granted being able to walk from point A to point B, truth is they don’t know anything different to be able to appreciate it. To those people who wake up every morning and complain that they are “too tired” to get out of bed. I hope you appreciate that on top of fatigue you don’t need to deal with pain worse than child birth, swollen limbs, and wondering if your body will give out on you when you stand.

Surviving in a life with CRPS is something that nobody should need to face. To those Warriors who have no choice but to fight, I hope I can convince you to always live your life in the moment. Every Warrior deserves to live as “normal” of a life as possible. In fact you’re so busy fighting, worrying, thinking about the future all the time, that sometimes you must learn to let it all go and do what makes you happy. Life is too short and our ‘good days’ are too short to waste them on things that don’t ultimately leave a smile on our faces at the end of the day.

On that rare occasion where you have enough energy and feel well enough to go out with some friends or your family, but you’re torn on what to do, because you have a test in school tomorrow, or have been struggling with too much on your plate at work and should really work overtime, do yourself a favor. Live in the moment. Realize that not getting that A+ won’t make a huge impact on your grade; and realize that you avoiding your work for one more day won’t make a huge difference. Don’t think about what impact this decision will have in the days, weeks, months to come because chances are it has no impact that far into the future. Sometimes, we must stop striving to go above and beyond in everything we do, but shift our focus on making ourselves happy. I’m not saying school and work shouldn’t be a priority. I’m simply stating that your overall well-being and happiness should be just as important. Sometimes it isn’t even a matter of choosing between one or the other, but a matter of finding a happy medium. When a good opportunity comes your way, no matter the sacrifice you may have to make if it’s going to bring you happiness jump at it. You never know when your health may take a turn for the worse and that opportunity may no longer be available to you.

You, a CRPS Warrior, go through and have lost too much to lose your happiness too. Maybe there is no pill we can take or treatment to cure us, but I can assure you that happiness can go a long way and make this life you live a whole lot easier. This is one thing that you can do to truly help yourself. So next time you say “What if?” or “I can’t, I have a lot of work” or “I wish I could, but I really should _______” , smack some sense into yourself and treat yourself to something you deserve. Never lose touch with what brings you true happiness. After all, we never know what the future may bring and I’m sure you would hate to look back at your life and have regrets. Live in the moment it truly is the best medicine you can give yourself.

Crazy Sock Walk Raises Awareness for CRPS/RSD and More

January 26, 2016

By Samantha Barrett, Special Events Coordinator

For the past few years, I have participated in Crazy Sock Day. I am a lover of crazy socks and have quite an inventory of them, so every day is Crazy Sock Day for me, but on January 24 it is embraced by the invisible illness community. I had heard it was for a young girl named Melanie who had several of the invisible illnesses that I did. As the years went by, I learned more about this young lady’s story. January 24 is her “painiversary.” To raise awareness and bring a little bit of sunshine to this girl’s life, Crazy Sock Day was started. It quickly took the CRPS Community by storm through the Internet. Five years into Crazy Sock Day, Melanie and her family held the first Crazy Sock Walk. This year, I was lucky enough to attend the second Crazy Sock Walk on the day of the 6^th Crazy Sock Day.

Melbourne, Florida is absolutely beautiful. A sight that was even more beautiful was all of the bright, outrageous socks that were on each person in Westbrook Park when I pulled up to the start of the walk. Thigh highs, knee highs, baby socks, fuzzy socks, every type of sock you could imagine made an appearance on at least one person. Some people wore two socks on each foot to make their socks look even crazier. When you see a large group of people all wearing neon socks blatantly on display, it certainly catches your attention. This year’s walk was dedicated to Hannah Bernard, a CRPS Warrior that left us too soon.

The sidewalk was decorated with chalk and anyone could contribute to it. The first thing to catch your eye was the Crazy Sock Walk chalk design on the ground. As you look around the park, you’d see signs on each side of the sidewalk, every few feet. Each of these signs offered different facts about the different conditions that the Crazy Sock Walk/Crazy Sock Day raises awareness for. CRPS/RSD, EDS, Mito, Gastroparesis, and other invisible illnesses were all being acknowledged. There was a beautiful, professionally made, banner for the Crazy Sock Walk. When you walked beyond that, there was even more going on! To the left, there was an information table for RSDSA and the US Pain Foundation that also featured information about Melanie’s story. There was also a food and drink station and an area for baked goods. Straight ahead there was a silent auction table, primarily featuring photographs taken by Melanie. There was also a raffle table featuring various gift cards from local businesses. To the right, there was a station to design your own crazy sock on paper to hang up as well as a place to play games such as corn hole and hula hoop.

I was instantly greeted by Melanie’s mom, Laurie. Instantly, you felt like you have known her forever. Hugs were given all around and the chatting came naturally. I then met Melanie’s father and the photographer of the day, Shawn. Melanie then came over and greeted me with one of the biggest hugs I have ever gotten. She was excited to show me around and to talk. We both have a love for crazy socks, and she was proud to show off both pairs and tell me what a goose chase it was to get the thigh highs. I then met her sister, Alyssa. Alyssa went to school to become a physical therapist and continues to further her education. She brings as many people with her as possible, most of which she met at school. People traveled from all over Florida to come show their support for Melanie, her family, and to make a difference in the lives of those living with invisible illness. The love and respect Alyssa has for her little sister is obvious. She wants to make a change just as much as Melanie does. Melanie’s brother, Jack, and grandmother were working the auction and food tables. Everyone in Melanie’s family played a huge part in the success of this event.

Before the walk kicked off, Alyssa and Melanie said a few words, gave out some prizes, and announced the winners of the raffles. The awards were given to people with the best socks. I happened to receive best animal socks and got a golden duck trophy. Super cute and very thoughtful. Walking through Melbourne, we certainly got the attention of the cars around. Everyone made sure their socks were easily seen. It’s hard not to notice a giant group of people with brightly colored, funky socks. It is the perfect way to get someone’s attention and make them ask questions.

Although my time with the Dickens family was short, I could feel how much they want to make a difference. They are doing such a fantastic job. My Facebook news feed was full of Crazy Sock pictures, even for the people that couldn’t make it to the walk. Awareness is so incredibly important and getting even three people to participate spreads awareness that much more. Those three people can tell another three people each and start a chain reaction. This family acts as a unit and I know they are going to do fantastic things; they already have. Six years of Crazy Sock Days and Melanie is now only 16 years old. Can you imagine what is to come?!

This just goes to show that you can make a difference. No matter how old you are, what your idea is, or where you are in the world, you can do something that will impact the CRPS community. All you need to do is want to make a difference and act on it. I left feeling so inspired and so grateful for being part of such a wonderful community.

We would like to thank Melanie and her family for welcoming us to her walk. We are honored to be a part of her journey. Thank you, Dickens family, for all of your hard work and dedication. We can’t wait to see what is to come in the next few years for both Melanie and Crazy Sock Day. You can buy a t-shirt until the end of January. Buy one here!

Crazy Sock Day for CRPS Awareness

January 19, 2016

Interview by Sammie Barrett, RSDSA Special Events Coordinator.

For the past six years, there has been a day in which people wore crazy socks to raise awareness for CRPS/RSD awareness. I heard about it in its second year and encouraged my friends and family to participate. We would post pictures of our crazy socks online to our personal Facebook pages and to a page dedicated to this Crazy Sock Day. Last year, the first Crazy Sock Walk happened in Melbourne, Florida. It is happening again this year. The masterminds behind this: the Dickens family. Melanie is teenager living with CRPS/RSD among other invisible illnesses. Her mother, Laurie, is one of her biggest advocates. I was able to interview them this week, as they prepare for the second Crazy Sock Walk and the sixth Crazy Sock Day. To see how you can give to this event, please click the link or see the bottom of the blog page for details.

Sammie: Melanie, tell me about a little bit of your journey with CRPS/RSD. Laurie, what has your experience been as a mother of someone with chronic pain syndromes?

Laurie: It’s been a learning experience over the past six years. We started with having absolutely no knowledge of RSD/CRPS or how we would be in a life changing situation with our 10 year old child. The information available was confusing and conflicting, especially for the pediatric world with this diagnosis. The search for appropriate doctors was long, and is ongoing. We’ve spent hours researching and networking. It’s been an ongoing process that still has a place in my life today. Melanie has been a complex case with many comorbid conditions and additional diagnosis, so we’re always team building and finding just the right treatment to help enhance quality of life and promote as much normalcy as possible.

Melanie: It’s been a rough journey, especially during the beginning. It was super scary, I was used to my parents being able to tell me what was going on and why, then all of the sudden they didn’t have answers. It was really hard in the beginning because I thought I would go to physical therapy for a month and then go into remission, I actually think that I was making things harder on myself thinking like that. It has taken a while but now I don’t expect to get better. If I do get better, I will be thrilled, but I’ve made it six years so I can “live” with it. Coping helped too, but honestly nothing could help the emotional roller coaster of the first 2-3 years, I had to go through the stages of grief; I was grieving my old life.

SB: You’ve been running Crazy Sock Day for 6 years now! What made you start this day of awareness?

L: My husband, Shawn, and I proposed Crazy Sock Day to Melanie as the year anniversary of her life altering injury approached. We wanted to make sure that this day was not one of sadness and loss, but yet, a celebration of Melanie’s strength and determination to live with the challenges of chronic pain. Since Melanie had been wearing long colorful knees socks as part of her physical therapy desensitization routine, it made sense to ask anyone who knew Melanie to wear socks like hers. What started as a small “event” within our family, at her school, and even among many Facebook friends, soon became a “holiday” of sorts that Melanie has always considered very special.

M: As much as I’d like to, I can’t take full credit for Crazy Sock Day. My parents came up with the idea because I was getting upset about the year mark coming up, they suggested all our friends and family wear crazy socks and that was that. After that year I was super involved because I realized that it could actually make a difference.

SB: What do you think about its success?

L: I’m thrilled with the support and attention Crazy Sock Day has gained, and feel it’s been commanding of RSD/CRPS awareness. We since added a goal of awareness of Gastroparesis, Mitochondrial Dysfunction, Ehlers Danlos Syndrome (Joint Hypermobility Syndrome), and Invisible Illness in general, as these issues all affect Melanie and many others with RSD/CRPS.

M: It means a ton to me; so many people know about chronic pain and invisible illness. I have been through a lot, especially with people judging me so the fact that more people are aware of invisible illness makes me happy.

SB: The second Crazy Sock Walk is January 24. What should people expect to see at the walk?

L: Crazy Sock Walk will have a raffle and silent auction with prizes donated by friends and community businesses (along with some of Melanie’s framed photography and artwork), a sock raffle, as well as a bake sale, food & drink items, and a one mile group walk in crazy socks. Melanie also has various awards she gives out to participants.

M: AWESOMENESS! Just kidding, we will have food, games for kids, food, baked goods from the “Amazing Melanie Marie Bakery”, raffles, and art for sale.

SB: How has the support of the community been?

L: We’ve had support from many local small businesses in donations for the raffle and auction. Friends and family are always supporting Melanie but we hope this year to have even more community participants with a very close to home location for the walk.

SB: What is the best part about having this awareness day, and now event, each year?

L: The best part about the awareness day is the smile on Melanie’s face as she sees the impact she has had and the support being given to not only her, but others, who are dealing with chronic pain and illness. The Crazy Sock Walk event has taken Melanie’s Crazy Sock Day to a new level. While Crazy Sock Day has never been about money, the walk does bring in a nice donation to two non-profits we see as vital to the RSD/CRPS, and chronic pain community. (US Pain Foundation and RSDSA)

M: Everything. This disease has been the most difficult thing to happen to me, to see that so many people care about me and Crazy Sock Day is insane. I never expected it to get this big, or really even past friends and family so it’s just astounding.

SB: Have you been able to meet people that have stories similar to yours because of this?

L: We have met many people through Crazy Sock Day, and heard many people praise Melanie’s efforts, or even say they have learned from her journey.

SB: What do you see happening with this in 5 years?

L: Crazy Sock Day will always exist with the power of social media, but, we’re taking each year as it comes as far as any physical events. Crazy Sock Walk 2015 was great fun and successful, and we hope to see Crazy Sock Walk 2016 meet or exceed that. We’ll see what 2017 brings. There are always ideas circulating in our minds.

M: Honestly I have no idea, and as long as my friends and family are still participating, I’m happy.

SB: What is something you want everyone to know about you/the event?

L: Crazy Sock Day is all because of one young person who brought a big buzz and made change in an area where change was needed (awareness). I hope people will learn from this, that every person, no matter your age, can make a difference.

M: I’m not some amazing, strong person, at least no more than anyone else. I just do what I need to in order to live my life. I don’t do this for attention, it actually has very little to do with me other than it being my injury anniversary, I just want people to know about invisible illness, CRPS, Mito, Gastroparesis, and EDS.

L: Melanie has faced many obstacles and challenges in her young life because of chronic pain and illness, but she has shown through her actions that you can adapt to a new normal, you can improvise with participation in activities, and you can keep living despite it all. This is the true spirit of Crazy Sock Day.

It’s not too late for you to support the Crazy Sock Day/Crazy Sock Walk. To donate to the event, please click here. Visit Custom Ink if you are interested in purchasing a Crazy Sock Day shirt. Be sure to wear your craziest socks on Sunday, January 24. You can post pictures to the RSDSA Facebook page and we will share them with Melanie and her family. Proceeds from this event will go to RSDSA and the US Pain Foundation.

How Camp Is Changing Lives For All Ages

December 1, 2015

By CRPS Warrior Candice Clifford, Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session

Experiences which leave an impression on your heart are the ones that stay with you forever…

I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp. I took a solo trip, not knowing what to expect but ready to have fun with the campers. To many, Kentucky seemed like a random place for this east coast girl to be traveling to. However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous.

Working with children who live with chronic pain and/ or illnesses is a population which is very close to my heart. I went to school for counseling, and later received a M.S. in school counseling. However, I soon realized during my last year of graduate school that I could no longer ignore my fascination with the medical field and had to follow my passion. Volunteering at CCK was my first step in making this change in my life; I went down to KY believing this experience was going to either confirm or dis-confirm my career aspirations. Needless to say, after spending four fun-filled days with the campers and their families, hearing many stories, and speaking with some amazing advocates in the field, I without a doubt knew this is the population I would advocate for.

The only way to describe CCK is the “Disney of Camps”. The staff goes above and beyond to accommodate the campers and their families, they generously transported me to and from the airport, and went to extreme measures to ensure that everyone had a memorable time. I could go on and on about how much I love CCK, but you really have to experience the magic to fully understand what I’m speaking about. There is something special that surrounds the campus; allowing children to be a child first, not a symptom, or a diagnosis. Camp brings families together, and creates a bond that seems to grow even when camp is over. The sky is the limit, dancing is prescribed, and it’s totally normal to be laughing one moment and crying the next.

Ironically, I was also at CCK during my four year anniversary date of being diagnosed with CRPS. I’ve come along way in four years; I received both my B.S, and M.S, traveled to El Salvador on a service trip, and endured an intensive pain rehab program. Before going to camp I wasn’t very vocal about my chronic pain to the outside world. Letting people in is scary, but if there is something that someone can learn from my story then the suffering I endured was worth it. One of the biggest lessons I learned at camp, is being vocal about CRPS doesn’t mean you are making chronic pain your full story; being vocal, and advocating leads to more awareness, education,and earlier diagnosis.

Volunteering at CCK taught me more then I could ever provide my camper. There are times when I hear myself chanting camp songs and other times where I feel so incredibly blessed to have stumbled upon the RSDSA newsletter announcing the camp that I cry. Not only am I grateful that attending camp pushed me to work towards my passion of teaching yoga to kids who live with chronic pain conditions, and launching my website Empowering Roots, but it also unexpectedly led to me learning about my own health. After having conversations with two very special people and gaining knowledge from parents at the camp, I was diagnosed with Ehlers-Danlos Syndrome a month after coming home from camp

Needless to say a piece of my heart will forever be at CCK…You might not come home with a new diagnosis, but I promise your experience at CCK will be just as life changing.

When I saw RSDSA’s fundraiser Coins for Kids, I knew I needed to do my part to help more kids experience the magic of CCK. I quickly created a Facebook Event “Candice’s Coins for Kids” and informed my family and friends about my fundraising efforts. Additionally, I shared many of the videos that were created after the pediatric pain camp to show others how their donation would impact the kids and their families. Thus far I have raised $350 (not counting change). My heart is so full of gratitude for the generosity of others and I am excited to volunteer at CCK in once again this July. Hope to see you there!

CCK – We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

July 21, 2015

By Samantha Barrett, RSDSA’s Special Events Coordinator

I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own!

The children and their families were able to partake in a few days of pure fun. The theme of the week was “Get Animated” and featured characters like the Minions, Baymax from Big Hero 6, and other popular animated characters. Each family was assigned a counselor or two to help them through their time at camp. The counselors were fantastic. Several of them are going to school for various medical degrees. They are the future of medicine. The kids all seemed to bond with their counselors instantly. As the week went on, the counselors seemed to become more and more interested in the rare conditions and diseases that the kids had. But, there was never a focus on being “sick kids,” only on the fun to be had. The kids were not required to participate in every activity. If they needed to go sit down or to go nap, they were able to do so.

There was archery, horseback riding, fishing, canoeing, paddle boating, cooking, and bowling, as well as woodshop, arts & crafts, beauty shop, a pool, a gymnasium, and an arcade. Those were just the activities that the kids could participate in daily. Each area had a water cooler for everyone to fill up their water bottles, as the heat was incredible. If it was an outdoor activity, there was also a cooler with cooling towels to help prevent overheating. It was perfect. The counselors kept making sure that their kid was hydrated and made sure that an adequate amount of sunscreen and bug spray had been applied. There was also a carnival, a movie night, talent show, and the Messy Games. The Messy Games seemed to be a highlight for everyone. Each family was assigned to one of the lodges at CCK- red, green, blue, or yellow. Before the Messy Games, everyone got paint each other’s faces with the color of their lodge. They all came out to the main court yard with their team flags, chanting their lodges various cheers. There were four stations for each lodge to go to. One station involved pudding, another station involved oatmeal, another involved shaving cream, and another was a mystery slime. The goal of the Messy Games: use each of the four stations to try to make your team the messiest. The messiest team wins. I stood in the “safe zone” watching everyone cover each other with everything to try to become the messiest. Parents, counselors, kids, and other CCK staff members were all laughing, chanting, and flinging the mess at each other. I couldn’t even tell you which team won; I just remember only being able to see people’s eyes after the games were over. After the games, they were all able to dump water over their heads to clean off. This water war was just as entertaining as the Messy Games.

The talent show was a nice surprise. There was some singing, some acting, and some musicians among other talents. The counselors helped out if their camper wanted to participate, whether it was holding their microphone for them, being background dancers, and helping keep everything as smooth as possible. These kids had some truly amazing acts, it just took the talent show to get them to expose these hidden talents. We all even got our own Playbill with the featured talent listed. We had our own Elsa, a mini Taylor Swift, a female Sherlock Holmes, and more!

Mealtime was the perfect time for everyone to bond. Everyone had the chance to sit together at the long tables. This is where everyone could chat, plan the day, vent, and just hang out. CCK was very attentive to the different dietary restrictions that some people had. Everything was labeled to say if it contained gluten, dairy, eggs, nuts, and other allergens. There was a separate area in the back where people could go to get the gluten free and/or vegetarian option for the day. Mealtime can be stressful for some, but not this time!

As I observed throughout the week, I almost forgot that these were kids that did not do things like this on a daily basis. What a blessing it can be to say that I sometimes forgot about my own disabilities as well. As camp-goer Emily Schellhammer stated: “Camp is amazing and there, you aren’t an illness or injury or anything. You are a name and a kid. You’re equal to the person(s) next to you. Here, no matter what, you fit in. You aren’t judged. Here you’re free and happy and know you are not alone.” Some of these families haven’t been able to bond like this in quite some time. Having people from all over the country created a network for the kids and their parents. A mother of two of the campers, Marianne St. Clair, said: “The camp experience provided our family a place to connect, exchange information, and develop lasting positive memories with other RSD/CRPS families. Smiles and laughter are the best medicine and although the journey was difficult to get there and home, the trip was so worth it for the children and mom.”

I look back on my week in Kentucky and tears instantly form. It was such a happy time. There was so much positivity and joy. I wish that I had been able to go to a camp like this when I was younger, although I’m sure I still would have ended up stuck in the middle of the pond in a paddle boat. It was truly amazing to get to know the kids, parents, counselors, and other staff members at CCK. Thank you to all who came out to participate and all who came out to help. This camp was a dream come true for everyone. This was a brainchild and dream of Sue Pinkham, so please join me in thanking her with the Sue chant that rang through CCK: Sue, Sue, Sue, Sue, Sue, Sue, Sue!!!

RSDSA is extremely proud to have been a part of this pilot year for the pediatric pain camp. We have high hopes for another camp experience in years to come. We know there are more kids out there that would greatly benefit from and enjoy this camp. If you would like to learn more about this camp, and/or how you could potentially help in years to come, please contact Sue Pinkham at [email protected] or (781) 771-2095.

Please consider making a donation to RSDSA today!

Learn More About the Camp for Courageous Kids

April 2, 2015

Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It’s your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc.

Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain – there are no summer camps for your child because he/she is “too complex.”

But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky.

RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17, 2015 for children ages 7-17.

The goals of the summer camp are fun, fun, and (you guessed it) fun! It is the first time we have ever found a camp for children living in pain.

The camp is totally FREE for all participants and one parent who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today! Space is limited.

Please consider making a donation to RSDSA today!