January, 2016

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.

RSDSA Spotlight: Dear Body

January 12, 2016

Written by Melissa Lovitz, Guest Blogger for RSDSA

Dear Body,

I’m sorry for wishing you were different and calling you flawed. Living with chronic pain for twelve years taught me to question a lot and dislike much about you. In the chronic pain world we’re encouraged to constantly ask ourselves, “are you hurt or does it just hurt?” We live in a world where “find a distraction” is our first line of defense because “find a reason” and “find a solution” aren’t always possible. The absence of an explanation from you about why it hurts makes me crave reason and logic that much more; that directly conflicts with my experience of pain for which there is little semblance of such amenities.

I’m sure many other bodies with chronic pain can relate to the psychological scrutiny they experienced when they first sought treatment for why they hurt. Doctors and family members alike were determined to tell me that you’re making it up – it’s all in your head. IT’S NOT IN YOUR HEAD! The only things that are in your head are the decisions you make and the ways you live your life each day in spite of and because of your chronic pain. Body, I spend a significant amount of energy and effort fighting for functionality and normalcy which both come with their own unique consequences. For example, the cultural notions of what a “perfect body” looks like has made it easy for me to find reasons to dislike you. Mainstream media tells me ableism and thinness are indicative of ideal bodies; for you, that’s not realistic. It’s hard for you to attain what the world depicts as the “perfect body” because often there’s no explanation or quick fix and, in some capacity your physicality is limited. I’m sorry if there were some days I pushed you too hard. When you live with chronic pain, you’re taught to simultaneously be hyperaware of yourself, question yourself, and ignore your pain whenever possible.

The dismissive nature of ignoring your hurting, ignoring you, can be minimizing to a body plagued by chronic pain. It perpetuates a narrative that suggests that I can just think your pain away and that it’s psychological, maybe even not real. I think this makes others perceive your experience as less severe. Living with an invisible illness means that if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Likewise, for you, that same narrative makes good pain days much more deceptive. I sometimes find myself questioning your experiences – asking “is it really that bad?” Sometimes, I even feel like those other, bad, days are someone else’s life, a dream, or something you conjured up. That’s what they want me to think! The problem is, if I’m questioning you, why am I surprised when others do too? What accommodations, narratives and misconceptions are others supporting or creating about chronic pain that keep us questioning you?

Here’s an idea, Body, rather than criticizing you let’s, together, accept your reality, reclaim your strength, and demonstrate all the ways you can be excellent? All the ways, WE can be excellent.

Sincerely,

RSDSA Spotlight: When to Listen – A Day In The Life With CRPS

January 5, 2016

By Autumn Strand, Guest Blogger for RSDSA

I, like many, had never heard of RSD/CRPS until it actually happened to me. I remember on the ride home googling it after the 3rd doctor I had been to said it is what I more than likely had. After many tests and even more treatments, I was diagnosed with this mysterious disease but I still wasn’t sure what was happening to me. I have done a lot of research, and I am still learning new things every day. In my experience, most doctors do not know very much about RSD/CRPS so how can other people know?

In the world of invisible illnesses it is almost impossible for people without them to know what it is like to be you. I look fine. I look like a normal thirty-something woman who is going about their day. I may look a little strange because I am pretty much always carrying my right arm around but for all intents and purposes I look “normal.” Now let me tell you the real story. If I am out of the house I probably have makeup on or my hair looks halfway decent. To look halfway decent required A LOT of effort. I winced, and took breaks, and sighed, and cursed the pain gods many, many times. I am also sweating from not only the effort but from the pain. To top it all off I am nauseous because I am almost every day. Yay, now I can leave the house. If I am riding as a passenger in a car I have to deal with a passenger side seat belt. This is constantly a problem because if the seat belt touches my collarbone it hurts and then causes a domino effect making my pain worse than it already is. Let’s say I get to my desired location, now I will carry my RSD infected right arm around with my left hand. I have been doing this for a very long time and the reasons are: because it hurts just hanging there, I feel like I am somehow shielding it and I am likely having a tremor. You may see me out in a store or at the library and I may seem fine. I am not. I am screaming on the inside. I am trying not to think about the pain. I am on fire but you can’t see my flames.

A lot of the time staying at home just sounds so much better. But, the same thing happens no matter where I am.

So I have painted a slight picture of what I deal with and now I want to talk about listening. People who do not have RSD/CRPS do not know what it is like. I constantly hear other people tell me their arm, leg, finger, toe, head, neck, etc. hurts and I am positive it does. Does it feel like you are literally on fire and there is nothing you can do about it? Probably not. Does it feel like you have ten thousand angry fire ants crawling in your veins? I hope not!!! Does it stop? I really hope it does.

Mine does not.

There are days when the fire is a slow burning flame and the ants aren’t as angry as before, but it never goes away. There has never been a day where the swelling wasn’t pulling my at skin, or the intense throbbing wasn’t another heart beat I was feeling. There isn’t a day when sitting in a chair or laying on a bed wasn’t causing me actual pain. When I make a passing comment of “my arm/shoulder hurts,” it doesn’t just hurt, it’s just all I said. Sometimes people with these invisible illnesses just need to be heard. I know I try to explain it to those around me and even though they may try, they do not know. There is no way to know unless you live it. I know I am seen as ungrateful, a complainer, lazy, and that I exaggerate but those people don’t know. I am glad they don’t know the hell I live in because I wish I didn’t, but they also don’t listen. They hear you but they don’t listen.

In life people generally just want to be heard. People with chronic pain need to be heard. We need to tell people that something on us hurts without hearing back something on that person hurts too. We aren’t being narcissistic, or at least we are trying not to be, but it’s not the same. We don’t know the pain you are in, but you most certainly do not know the pain we live with every second of every day. We all just need to listen more and those without chronic pain need to also understand more. We didn’t ask for this and we would give anything to not be living here.