Are you in search of Support?

Do you have crps, and in search of support?

Have you had trouble finding a support group for Crps?
We here at Rsd/Crps Doesn’t Own Me know exactly how that feels.
Our staff all know what this is like because we all live with crps ourselves, and we know how important gaining support from others really is.

So knowing all the we began searching for a safe, non-hackable, private text and voice service for ourselves and fellow Crps patients, and even their families to find much needed support.
To become part of our support chat please check out this link and answer a few short questions.
https://goo.gl/forms/zyedJyS8zSGQKQF22

Once approved you will get an email with directions and a link inviting you to our discord chat server.
If you have any questions please email rsdcrps@gmail.com

 

Life after Diagnosis

Not a single veteran of the RSD/CRPS community can say their diagnosis did not change their lives in some way. Many faces uncertainty, job loss, hobbies no longer joyful or even possible dependant on the activity.

But finding life after diagnosis, be it with CRPS, cancer, diabetes, or really anything else, can be there greatest gift we give ourselves. Can change our treatment approach and even our treatment SUCCESS.

While there will still be the bad days, the better days will grow to out number them because we have something to look forward to. Our founder loved the theater. Loved acting. Loved making people smile and laugh.

And for years she thought it was behind her after she was injured. It's been over 10 years since her injury. Is this the life she expected? No. But the life she has now is different, but still good.

Not only did she take on the challenge to create a new way to enjoy her love the theater, but to bring those smiles and laughs to others. She became a podcaster on YouTube for a game called Minecraft as RSDAngelOnFire.

She has grown a small following both here and in her new approach to get hobbies with CRPS. And like us all, she still has her up and down days which means while she's very busy making those amazing and fun videos, she is still one of us. And today is her 8 year anniversary of being RSD/CRPS Doesn't Own Me's founder.

So let's give a HUGE round of applause for Christa and her fight to live by her own advise, that there truly is life after diagnosis!

Way to go Christa!

Communications

Unfortunately, we just discovered persons were posting “comments” on our pages. Pages will not alert us that you are asking for help. If there is a form on the page (such as the chat sign up on http://www.rcdom.org/chat) you can reach us through these.

The page comments function has now been deactivated. You may still post comments on articles such as this, but please try to keep to the topic. If you are needing to reach us there are many ways to do so but “public at rcdom.org” email is often times the best way to reach us.

CRPS & the Snowball Effect: Sleep

Effects Of Sleep Deprivation

When you pull a rubber band to its furthest point, what happens? It breaks. But what if our bodies are that rubber band and our pain is constantly pulling our bodies needs and our lives we try to live in, in two different directions. Eventually something will give.

And at first, it’s painfully obvious to our friends and families that live with us. Our ability to sleep is going, going, gone! But what we don’t always see, is the full impact our sleep really has on us in our every day lives before having RSD/CRPS.

On healthline.com, they highlight what a lack of sleep can cause. And it isn’t a short list. As a matter of fact, a number of things we frequently refer in chat to as being part of the CRPS itself, but not only can some of the issues be blamed on the medicines we take, but many can be blamed often directly on the sleep we aren’t getting.

Deprivation
Effects Of Sleep Deprivation

Sleep is a critical part of our bodies healing process. It helps it regulate our metabolism, helps our brain recover from all that we put it through during the day, helps our body stay stronger, and fight against the worlds many colds, flu, and viruses out there.

So if you haven’t discussed your sleeping issues with your doctor, maybe put this on your list. Because while the avalanche might start with someone yelling called CRPS in the mountains, much of the snow, is that sleep we aren’t getting.

Athens Teen Struggling with CRPS

Sydney Jones

Posted by Bobby Shuttleworth, Reporter on 

ATHENS, AL (WAFF) – Imagine your child being in excruciating pain, and nothing you or her doctors can do will give her relief. That’s what the parents of an Athens High School athlete were dealing with.

Not too long ago, 16-year-old Sydney Jones was in the hospital for some stomach problems when her feet and legs became numb.

“It felt like snakes were wrapped around them, just squeezing them,” she said.

Her mother, Bernadette Jones, said she initially thought her feet were just asleep from being in the same position. She said the nurses thought it could have been some sort of reaction to the medication they had given her.

She said her daughter wasn’t walking normally when she was discharged. Days later, the pain went away.

“It flared back up a couple of weeks later. The pain was excruciating,” said Bernadette.

Another trip to the emergency room followed.

“So they did ultrasounds and everything came back normal,” said Bernadette.

They then took their daughter to Children’s Hospital in Atlanta. Her mother said Sydney was diagnosed with complex regional pain syndrome, or CRPS.

“The body can experience an injury or some kind of traumatic experience, and even after you’ve healed from that illness or that injury, the brain keeps sending pain signals to random parts of your body,” Bernadette said.

They eventually landed at the Cleveland Clinic for three weeks, which has a program for children with chronic pain. Her dad says it was not a cure.

“It was more of teaching her how to cope with the chronic pain that she was going to be experiencing,” said Lester Jones.

It’s a challenge for any parent.

“My role as a father is not only to be a provider but also a protector, the one that’s supposed to help my children feel safe,” said Lester.

“And as a father and you feel helpless and there is nothing, there is no source or remedy that I can give to that,” he said. “That is the worst type of experience a father can have.”

Sydney is a junior at Athens High School. She used to play basketball, but this condition caused her a lot of pain even during games.  She tried to push through it but eventually she had to stop.

Her parents were told that sometimes children grow out this condition, but there are adults who still struggle with chronic pain.

Sydney is leaning toward a career in health care as a forensic nurse.

“I also just thought about being a physical therapist because physical therapy helped me at one point. And I feel like doing that can also help others,” Sydney said.

The prayer for Sydney is to have a productive life and not let pain be in control.

Copyright 2016 WAFF. All rights reserved.

Disabled: Superhero in Disguise

This weekend I got to enjoy the movie Doctor Strange with my family. I have always been a major comic book nerd and when there is a Marvel or DC movie I am all over it.
superheroes
Benedict Cumberbatch’s portrayal of Doctor Strange was amazing but not because of the character’s heroism but because of the character’s disability.
In the beginning of the movie, you meet an overly capable Doctor, who borders on egotistical, top of his field in the medicinal arts. One rainy night he is speeding along a two-lane highway in the mountains and loses control crashing down the mountain side.
He awakes with titanium rods in his hands, rendering them completely useless, broken and nerve damaged.
Strange finds himself hopeless and searching for healing within his field.
All he wants is to be healed.
He meets a man who shouldn’t be healed, and from him learns of a place that teaches how to heal oneself. So he sells off all of his possessions and leaves in search of this place.
His journey brings him to a foreign land with nothing to his name and no friends in sight.
An ancient magical power is shown to him in and he doubts his ability to harness it.
Strange does not believe that his pain riddled and nerve damaged hands are capable of anything. He has lost all faith in himself.
It isn’t until he has no choice but to make a miracle happen that he learns what he is capable of.
We hold power inside of ourselves.
Our power may not be the ability to conjure strands of glowing matter that can bend all of time and space, but we are able of more so than we give ourselves credit.
Our lives have been turned upside down due to some unfortunate turn of events and suddenly we were stricken with life changing heartbreak. Should we just give up and believe that life is over? Should we hang up our capes and believe that we had a good run while it lasted?
No! We have a cape for a reason!
We are superheroes! We are able to mold our world around us through our superpowers that live inside our words and our actions.
We are far from powerless. The disabilities we have before us are a challenge but they teach us to become creative and innovative. The path is never straight or smooth, but it is rocky, steep, and horribly lonely. Yet we walk. We are still heroes in spite of it all.
At the end of the movie, after the bad guy was vanquished and the world set right, Strange looks down at his hands. They are still a mangled, shaking mass of damage flesh. Yet he was able to do all that I mentioned before.
We are able to do just that, we can live life in spite of our disabilities.
They don’t win, we live, we Thrive!
And through us, millions more will be inspired to be the heroes of tomorrow!
Excelsior!

Photo Challenge

RSDers and non-RSDers: I have a photo challenge for each of you for November! Get ready for a photo per day! This way everyone can participate and raise RSD awareness. If some of the days don’t fit you, just make one up that works! Away we go!

For RSDers:

  1. A picture of yourself today (introduce yourself)
  2. A picture of you around the time you were diagnosed with RSD
  3. A picture of you wearing orange (Color the World Orange)
  4. A picture of what caused your RSD (your story)
  5. A picture of your equipment
  6. A picture of what gives you hope
  7. A picture of your biggest supporters (how they help you)
  8. A picture that represents your biggest obstacle/challenge
  9. A picture of something you had to give up because of RSD
  10. A picture of your greatest accomplishment(s)
  11. A picture of how you make others aware of RSD
  12. A picture of what brings you comfort/security
  13. A picture of your goals for the future despite RSD
  14. A picture of something that brings you joy
  15. A picture that shows why you’re a fighter
  16. A picture of your favorite way to unwind from a stressful/painful day
  17. A picture of your hobbies
  18. A picture of you having fun despite RSD
  19. A picture of why you want people to be aware
  20. A picture of your dream escape
  21. A picture and quote that get you through the toughest days
  22. A picture of how you cope
  23. A picture of you doing something you never thought possible
  24. A picture of you goofing around
  25. A picture of how you explain RSD to nonRSDers and tips you give to RSDer
  26. A picture of friends you’ve made because of RSD
  27. A picture of what you are thankful for
  28. A picture of a song that touches your heart
  29. A picture of your most comfortable RSD outfit
  30. A picture of why RSD won’t get you down

For nonRSDEers:

  1. A picture of you with someone that has RSD (Explain your relationship)
  2. A picture of how you first perceived RSD
  3. A picture of you wearing orange for Color the World Orange day
  4. A picture of how you support an RSDer during a flare up
  5. A picture of how you’d explain RSD
  6. A picture of how you help fight for a cure
  7. A picture of what you do when you feel discouraged/helpless
  8. A picture of what you do to distract someone from RSD pain
  9. A picture/quote that you would use to explain an RSDer
  10. A picture that represents your thoughts on why we need a cure
  11. A picture of how you raise awareness
  12. A picture of how you think you’d be with RSD
  13. A picture of what you do for fun (to unwind from helping an RSDer)
  14. A picture of how you perceive RSD now
  15. A picture of you and and RSDer on a fun day
  16. A picture of how you would inspire anyone just diagnosed with RSD
  17. A picture of how you support other nonRSDers that help RSDers
  18. A picture of what you hope the future will bring for the world of RSD
  19. A picture of you with other non-RSDers that support an RSDer
  20. A picture of a quote that keeps you going
  21. A picture that represents your thoughts on skeptics
  22. A picture of how you release your anger/frustration
  23. A picture of friends you’ve made because of an RSDer
  24. A place you visit often with your RSDer
  25. A place where you wish you and your RSDer could go
  26. A picture of an inside joke you have with an RSDer that makes you both laugh
  27. A picture of what you’re thankful for
  28. A phrase you say to an RSDer on a regular basis
  29. A picture of something crazy you’ve done to help an RSDer
  30. A picture of you and your RSDer again, with a statement on why you will never stop fighting with them

Created by A.M. Styles

Little Things Can Add Up

Little pick me ups

imageI cannot express how much I love my friend, Brittany. So, what does that have to do with RSD/CRPS Doesn’t Own Me you might ask. Well it’s because she leaves little notes like this in the bathroom and every once in a while she or her hunny will share them on Facebook. I’m not sure if they are for him, for her, or for them both.

But what I do know, is having little reminders around the home can really make someones day. So next time you’re feeling exceptional and want to share or up late but want to start a house hold members day off great, leave a little moment like this for them.

Or heck if you feel like crud but don’t want to share the negative space, look up inspirational quotes. Because it really could change the entire course of all of your days!

The Wings of Strength

The tough week found me back to back for about a month. I became angry at myself, the world, the flares. They took me down into a dark place that I hadn’t visited in years. My anxiety flared. My anger became worse. I began to hide from everyone.

I experienced my first “freeze”. My left leg engulfed in ice. My right leg engulfed in fire. I began to realize this is a sign of the monster getting worse. The almost falls at home or in the store. The pushing myself through my day because I wouldn’t accept what is happening. Only to find myself laying in my bed on weekends and not wanting to move.

But last night I realized that while my anger and sadness are justified as I reel from losing my old life. My new life which is full of pain is also full of strength. Because everyday I win even if I feel like I am losing. I win because I keep moving. I win because I keep getting up. I win because when I am about to fall or I do fall, I pull myself up and keep going. I win because I laugh. I win because I am alive.

We all have those Wings of Strength. Let them help carry you through the day and keep fighting my fellow Warriors!riseabove

And a Gold Medal for Team USA (& Pain Warriors)

Paralympics USA Gold

On September 8th, the U.S. Women’s Wheelchair Basketball team started the Rio Paralympics with a record-breaking win. And yesterday, they took their trip to Rio another step further, they also took the GOLD.

Paralympics USA Gold
USA Women’s Wheelchair Basketball Team takes the GOLD

With every team are individuals who excel in their particular aspect of the games. And with individual of that team is a person who came to participate in the sport for one reason or another. And one of those who participated in this years US Women’s team this year, is Abby Dunkin, a fellow pain warrior from Texas.

Both Abby and Rachel Morris have done something that most American’s are brought up to identify as being the best of the best in their sport. They became part of an internationally recognized event and they have CRPS. Now maybe this was not what they expected to do when they grew up. But as Rachel discussed just two years ago after getting bronze in London weeks after her injury during training,

“They believe I can do something in the sport. I’m on the talent transfer for the first six months and then hopefully after the Worlds I can go through as a rower to Rio 2016.”

 

We will fall down, we will have challenges, but we can keep fighting to make that change in our lives. So remember these two. That they are proof when someone gives themselves a goal, they can achieve greatness. And while it takes time, effort, dedication, and most of all a great team of people supporting you for when you fall down, we can do amazing things.

Now, I may never win the gold at the Olympics, but I sure will win the gold of achieving my goals of helping support others. And that is all the winning I need.