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.
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 firstname.lastname@example.org
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.
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!
Yet another night goes by since I won my case and still my medication stays locked away in the vault called the pharmacy.
I was injured seven years ago. It wasn’t even my fault. I had to fight and prove I was really hurt. I had to go out and get a lawyer. Was forced to see multiple IMEs that had never heard of RSD/CRPS let alone how to spell it. Was told that although I am in pain I was only worth so much in your eyes.
Everytime I called my nurse case manager I felt as if I were, in her eyes, no more than a pest. Begging and pleading for her to help me rebuild my life but instead got told I was a lazy unproductive member of society.
Yet, I trudged on.
Did what I needed to do and danced like the little puppet they wished me to be.
So I could get medication to be able to function in my pieced together hodpodge life.
What happened next?
You deemed that frivolous spending and took it away.
If my pain medication were insulin would you still treat me in the same light?
Just because I won’t die without it doesn’t mean something inside me isn’t wasting away.
Your evaluators never gazed upon me or examined my physical complaints.
Yet they saw me as a number and words on a page.
Never stopping to wonder the damage this would engage.
On a beautiful young lady of almost 28.
Did you stop to think of ripple effect?
The tear soaked pillow or the pain in my chest?
No, you cast me aside without no thought or regard on how without my medication my heart was turning hard.
The hardness in my heart is becoming a daily struggle.
I am becoming Sisyphus and I’m always falling. The rock is forever hitting me in the face. Pain coursing through my body and I wake face down on the ground.
So please take this note and know you have been served.
I’ve had enough of being a number and being unheard!
Christa Whightsel is a 25 year old from Ohio. She has had RSD/CRPS for five years and each day is a struggle.
Christa was injured while taking the trash out at work one day and that injury from the trash cart running into her caused her RSD. She is currently living at home with her family.. She likes to stay busy as a Nanny and hanging out with her Amazing Friends and her Wonderful Husband Joey.
Living life with RSD has changed everything for Christa. For a very long time she was angry till she realized that being angry was only hurting herself. It wouldn’t change her situation, and it wouldn’t take away her pain, or bring her a cure. Half the battle against RSD/CRPS was her attitude. It is hard when you are in the worst pain imaginable to pick yourself up and tell yourself that life is worth living, when at the moment it doesn’t feel that way.
Christa believes she was put on this earth and given these struggles to allow her to grow and become the person she is today. She also loves to learn from others and grow with them. It is so important to support your fellow human being, because we all go through pain physical, mental, or spiritual, just not all go through all the above 24/7 365.
She feels like just like you, she knows her limitations but she has goals, dreams, and fears. She wants to live her life, despite the pain. It is very hard, grueling at times, and, truthfully, hard on her health, but that will not stop her from loving and living life.
All this helps her keep on bringing happiness and hope into the lives of her fellow RSD Angels. So in order to spread more awareness and RSD Angel Hope she decided to start a Support Group and Non-profit Organization (Still in the works,) called RSD/CRPS Doesn’t Own me.
She is grateful to God for allowing her to be able to live life to the fullest and to have met all the amazing people she has.
Life is always worth living and Christa lives by this mantra, “Reach for the Stars, eventually your arm will stretch. If you fall short, reach with another person, even then you are that much closer!”
Pull from her profile on the volunteers page (out of date based on dated submitted)
I am starting to think my body has a mind of its own.
When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. They called a squad but when they came, but they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn’t call the squad at all.
My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to trying to probe out that I wasn’t really blind. I walked into a sharp edged table and put a gash in my knee. She still didn’t believe me.
This went on for 7 months, no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by my excess fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Cerebri which is a buildup of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves.
I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn’t a cure for that either but there is a high rate of remission. I went in and out 2 times finally in remission for a while.
Flash forward to April 7th, 2008. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced the weekend before and they threatened my job if I didn’t take it out. I almost wished I had walked away but hey….anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart….big no no. It went rouge and ran into the back of my left heel….I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.. The blood in my shoe wasn’t customer friendly so they let me go home but I went to Urgent Care. They said I sprained it and it might be something else but to follow up with a different Dr. So I did.
I went to a “mouse” of a Doctor he put me in a walking boot. My foot started hurting….more then I would think a torn ligament and a sprain would be. I kept telling the Doctor but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace…..he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said, “It might be RSD”, but nothing was really said after. I stayed pretty laid up and bed ridden for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn’t getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had was RSD. I was so pissed and frustrated by this time that I wanted to spit.
My mom talked to a Doctor friend of hers and he pointed us in the direction of the best RSD Doctor in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympathetic Nerve Block and did different narcotics. I ended up in the hospital after the Nerve Block with double the pain. They gave me 3 rounds of dililudid before I could stand the pain again. So about November of 2008 he finally said that I should get a Lumbar Stimulator or also called a Spinal Cord Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain. It works to a degree but I still got about 70 to 95% pain most days. I got it in January 2009 and around May 2009 it died and wouldn’t recharge. So finally in October of 2009 they gave me surgery to give me a replacement battery that didn’t have to be recharged. Since the start of my RSD it has spread from just being localized to just my left ankle to now it has taken over my whole left side of my body.
People always ask me if my life is still worth living because of all I have been through. Of course life is still worth living. I have met so many people after I was diagnosed with RSD. In July I was married to the love of my life, Joey, and I wouldn’t take back a day I have spent with him. He truly is my rock and my strong hold. Then there is my friend Krista whom I started this organization with and I love her just as much as anyone could love someone. Then there is Flora who has been my sister in every sense of the world except for blood. She picked me up when I hated myself and taught me to see the positive in life and not the negative, and for that I thank her.
These are all people I wouldn’t have met in a million years. Also RSD/CRPS Doesn’t Own Me wouldn’t be also. It is my baby and I never realized it would blow up as big as it has. It keeps me hopeful that someone else who has been diagnosed with RSD/CRPS will find and hear about the information that we try to put out and goes into remission all the faster. We want to see that happen to each and every person afflicted with this horrid disease. We want to see every person’s family to support them and try to understand because without support we feel lost and hopeless.
I am so glad to be a part of this wide world of awareness and I pray that I will continue to be a part of it!
I sit here in a daze as I get the news this morning that we lost another Brother in the fight. This loss, each loss, effects me deeply. Life is so very fragile. The path we walk can be pin point narrow at times. We are all going through something the normal populous is unable to grasp. No matter what has happened on our journeys, we are here now. Each one of you are here, in this moment, with me as I write this. You are not alone. Never alone. Don’t believe the voice in your head that says other wise, because it is not true. Reach out – my hand is there. Many, many other hands reach out to you. Please, take a leap of faith – reach out and hold on. Sadly, we cannot walk this path for you. But we are here. We know the pain rages, aches, burns, and consumes our bodies. We know how frustrating it is to wake up in the morning unsure if it is worth it to crawl from the covers. But the support we gain here, from people like you, is what makes every minute of every day worth it! We put our faith in the fact that no matter what, we can always find someone that will support us through a current storm. We have solid faith that we will overcome, that through hard work, team work, we can make the world aware of our disease! We have even more faith that we can make the world care about what is going on in our lives, in our bodies. First, we must overcome the grief, the loss of dreams we once held and the longing for normal life. Yes, we want it back, but we must come to grips, that it may not happen for a while. It is a goal to be achieved. A goal that may morph into something greater than what we expected. We must live! And live Abundantly! Live with Love! We must break the pull of hopelessness. We are the only ones who know what is raging inside. We must put aside all the noise of doubt that may hold us back and rise above it. This is not a game! This is not a competition. This is a steady march up an incline of unimaginable grade. The ONLY way we will make it up this hill is together. Here lies the question! Who will join us!?! Who will reach out, hold hands and unite against CRPS? Heads held high, hands and arms tightly clasped as we march forward into battle! We are ready to take the first step…. Will you join us?
We will be no longer silenced. Please share this with everyone you know. Let them know that RSD/CRPS is real.
To learn more about RSD/CRPS and those it affects go to:
To donate to RSD/CRPS Research and a Search for a Cure go to:
A Hilarious List of Answers from a Disabled Person When Asked to Move
So a while back my mom and I went to see a movie! This was a big deal for me and caused a great deal of pain. We found good seats in the first row with the railing in front so i could prop up my leg and I have an extra seat so I can stretch my leg out when it spasms. My mother was on my bad side a seat over and I had left a seat open and I put my RSD Leg up on it so it doesn’t get hit. This man came in late and wanted mom to move over so he and his wife could sit down. I perked up and told him why this wasn’t able to happen. “I have Chronic Pain,” I said, “and I need the extra seat so I don’t get hit and cause more pain then I am already in.” He gave me a funny look and somewhat sarcastically said, “Excuse me, I am so sorry.” He then walked back to his wife and said loudly, “We can’t sit there, she has Chronic Pain….” I got to talking with my mom on this topic and we decided to write up a list of other things to say, since “Chronic Pain” is apparently a foreign Phrase in the English Dialect.
1.)”This seat is reserved for my Imaginary Friend. I’ll move but she’s gonna be pissed!”
2.)”I have a communicable disease and you would not be safe.”
3.)”The Little Man who lives in my toe is a trained Killer and will bite on command!”
4.)”As long as you don’t mind if I cuddle. One of my multiple personalities is a tramp.”
5.)”You’ll have to ask my master, she keeps me on a short leash and has an itchy trigger finger.”
6.)”I am afraid this seat is taken as is every other seat, by my bum leg.”
7.)” You can’t have this seat, because the British are coming!”
8.)”I’m sorry! I licked it and it’s MINE!”
9.)”As long as you don’t mind a wet bottom. My friend pee’d before leaving.”
10.) “The last man who sat here turned to stone, wanna try?”
11.)”See this cane? Its actually a cattle prod! Wanna ask again?”
12.)”I always save a seat for Hulk Hogan. I invited him to the movies, and he said we should do that sometime.”
13.)”You could sit here but that would be against my restraining order.”
14.)” Are you blind? The white rabbits own everything!”
15.)(Put hands over ears and rock back and forth) “Doctor said if you ignore the voices, they will go away!”
16.)”Have we been formally introduced? I never oblige complete strangers.”
17.)”Wanna see my death glare? Just ask again!”
18.)” I don’t understand but anyone who sits next to me suddenly becomes suicidal.”
19.)”Would you mind dying a slow and ignominious death?”
20.)”I duck-taped a troll under this seat and he already looks angry!”
21.)” The Who’s are on a speck of dust on this chair. A Persons a Person No Matter How Small!”
22.)”You are going to embarrass and offend my son, he is already sitting there!”
23.)”That spot is reserved for my seeing eye dog, should I ever go blind.”
24.)”NO! NO NO NO NO! I’VE ALREADY MOVED TWICE!”
25.)”I’ll move down as soon as you develop a debilitating neurological disease that causes you to swell and burn with each touch or movement. Oh! Wait…..that’s me!”
I hope this list made you smile but also made you think about how some people need to be educated on the importance on the subject of chronic pain and RSD/CRPS and how it effects those that have it.
Share and Link this on your Facebook and let your friends have a laugh and them encourage them to learn more about RSD/CRPS