A Legacy to Remember: Mary LaBree RSD / CRPS Activist
The 15th of October, a very beloved, beautiful soul and long-time health activist, Mary LaBree passed away due to complications from RSD/CRPS. Here, one of her best friends, Mary Jane Gonzales shares a heartfelt poem with us along with the late Mary LaBree’s story. This was originally posted on the RSD/CRPS awareness Facebook page: In the Blink of an Eye.
By Poet/Author, Mary Jane Gonzales:
“With this being RSD/CRPS Awareness Month, I’d like to begin the month by acknowledging the work of Mary LaBree who is no longer with us. Mary shared a small part of her story with us in September for Chronic Pain Awareness, but was reserving the bulk of her story for an impending book. For those of you who missed her post back in September, you can read it below. Though it offers just a glimpse at her story, I would like to highlight some of her accomplishments that I know of. Her and her daughter’s RSD Support Group was the second support group in the country, and the first to get a state proclamation (back in 1990). She founded the New England RSD Coalition, whose function was to serve and educate: through support, seminars and fund raising. She held teaching seminars with well known doctors; collaborating with them over many years. She was a strong advocate for RSD awareness, and a key figure in the RSD community. Even recently, she was asked to speak at a conference, but had to decline for health reasons.
Before I repeat her post from September, I’d like to share a poem I wrote for her a few months ago for her intended book.
A HELPER AND ADVOCATE
A soldier, a warrior,
A patient with tears,
A helper and advocate
For so many years.
Reaching and touching
All that she could,
To help them endure
What no one should.
Searching for answers,
Seeking a cure,
For her and her family,
And all who suffer
This dreaded disease
Her reason for working
Poem Copyright Mary Jane Gonzales“
My Chronic Pain Story
by Mary LaBree
“I became aware of RSD in the mid 80’s when I went with my daughter to the pain clinic where she had been diagnosed with RSD. Then, about a year or so later, when I got hurt and fractured my spine, my daughter said she thought I had RSD also. So she took me to the same clinic, to see her doctor, and I, too, was diagnosed with RSD.
After that, I went into treatment and it took four years for me to get better. Along with Post Galvanic Stimulation, which helped me a lot, some other treatments I’ve had include:
Alphalipoic Acid (IV)
Radio Frequency Ablation
Though all the treatments have helped, none have been long lasting. As you all know, RSD (Reflex Sympathetic Dystrophy), now known as CRPS (Complex Regional Pain Syndrome) has periods of worsening, be it flares or spreads. I was fifty years old when I got RSD. I am now seventy eight. In those twenty eight years with RSD/CRPS, I have alternated between walking unassisted, walking with a walker, and using a powerchair.
In the late 1980’s, my daughter and I started “RSD Support Group”. We were the 2nd support group in the country, and the 1st to get a state proclamation (back in 1990). It was the Massachusetts State Proclamation and we’ve gotten one every year since. We chose the color red and the month of July because July is considered the Freedom Month.
Later, my daughter moved out of state and she passed the support group onto me alone. In 1997, a colleague who came up for the July “Proclamation Awards Ceremony” approached me to form an organization, which was named the New England RSD Coalition. For all these years, the function of the coalition has been to serve and educate; through support, seminars and fund raising.
I have learned much over the years with Chronic Illness. I have learned to research all that I can about this disease which has affected eight people in my family…which was devastating and heart wrenching. I have learned to advocate for both awareness and patients. I have learned things that I can do to help myself beyond medical treatments, such as:
sitting in the sun
a positive spirit
Helping and doing for others is my “secret” for living with RSD, or just plain living!”
Mary LaBree left a lasting imprint on the chronic pain and RSD/CRPS community. She is one of the first chronic pain health activists. Without her dedication in clearing a path, so many of us would still be suffering in the dark. Mary LaBree’s commitment to her cause shows that life does not end with chronic illness; she made her battle her life’s work. Thank you, Mary LaBree.
**Also read In Memory of Mary LaBree- An Original RSD Advocate from RSDAdvisory, a personal account of a long and loving friendship with Mary.
Since Mary’s passing on October 15th, very sadly, more RSD/CRPS angels have been lost. We honor them all by raising awareness about the seriousness of this disease. Our hearts and prayers go out to their friends and families.
For a non-fatal disease, far too many don’t survive.
Flow Like Water: Reflections on CRPS / RSD year 2- Guestpost by Rikki Smith
I never thought a car wreck that did damage to my elbow
would stop me from walking an entire year later. I never thought you could get a disease from a car wreck.
I never thought I would have to depend on anyone else
to get me through tough times in my life.
I never thought I would face an uncertain future
without the ability to answer the tough questions.
I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.
Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.
There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.
I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.
You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on. It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level. We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face. If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities. I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.
I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!
I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.
To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here.
In Her Skin
She hasn’t slept for days. The pain in her leg reminds her of ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks. “When do these little guys ever take a lunch?” she wonders. They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, making her gasp for air. Now, her entire leg IS pain. It is no longer a leg. It is no longer HER leg. It belongs to a monster. To a disease she does not yet understand.
The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with white. Like a force-field that radiates around the limb, the colors have replaced flesh.
She waits for the sun to rise for her doctor appointment. All night, she recalled her symptoms again and again. She can’t leave anything out this time. He has to understand- I have to make him realize what is happening to me. I cannot live like this. I won’t. I can’t do it. He has to help me. I will make him understand.
Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from pain. Her heart races, body shakes, face tingles and room spins; all that she registers is pain. She feels herself floating away. All but for the leg. It holds her captive. She can’t keep her eyes open. Slow tears stream down her face. Flashes of the past few appointments cut through the fog.
Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are so young…”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try…Stop crying!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is just really hard to prescribe these days. How about some more extra strength prescription Advil?”
Two nights later, she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, 3x the size of the other, and his beautiful, 20-year-old love rolling around in her bed, moaning, barely able to form words. Even in her state, the doctors and nurses look at her with suspicion. “She has CRPS,” says the fiancé with an obviousness in his voice, assuming they will then finally understand. No, CRPS is a condition the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face. “She can see her doctor for pain medication,” he says, never looking at the girl’s face.
From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl gets pain medication immediately. “Don’t stick her with any needles and keep away from this girl’s leg, everyone!” directs the angel nurse. She tapes a sign to the bed saying “NO STICKS. DON’T TOUCH LEGS.” After the girl had relaxed some, the doctor sends her home with a prescription for pain medication and anti-inflammatories.
She finally had some hope. The medication wasn’t helping the pain very much, but she did get a few hours of sleep, finally. She felt more like herself than she had all week. Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her…was like a window just opened and she could breathe again. Maybe in time she would find a doctor like that nurse. Maybe if someone could help her…maybe she could try to do this.
Then, her mom stormed into her room. “Your father and I have decided we want you out by tomorrow.” Wait…what? What’s going on, mom? “We know you have been going around trying to get drugs from doctors. After your little trip to the emergency room last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”
This is inspired by a true story, but “The Girl” is un-named because her story is shared by too many who face this disease Complex Regional Pain Syndrome (RSD) and other types of severe chronic pain conditions. Chronic Pain does not make you an addict. Taking prescribed medications that allow you to function and survive is not the same as addiction. If you love someone with CRPS/RSD or a severe chronic pain disorder, please do some research on their behalf and understand that the media does not portray pain medication appropriately, from the perspective of chronic, terminal illness sufferers or from doctors who manage chronic pain disorders.
For more information, read Pain Pills: Chronic Pain Sufferers Speak
Please check out VioletDArt’s conceptual art page and her gift shop.
Shattered: Art and Coping
In the last 2 years I have learned more about digital art and adapting my creativity to technologies I can participate in with my new health challenges. It’s unfortunate that many artists still don’t recognize digital art forms as “real art.” If you are one of those artists, I encourage you to reconsider by taking the time to evaluate mixed media further. I’ve always loved working with my hands and being artistic, but when my CRPS pain condition went from my leg to also causing problems with my head and brain, ongoing migraine, intense eye pain, sensitivity to light, passing out disorder, heart, etc., it has kept me from participating in the arts like I used to. If you are an artist or crafter, you may understand the need to move around while doing your work- this I can no longer do.
I belong to a group on facebook called Chronically Inspired that encourages people with different types of disabilities and limitations to use art as a coping tool and provides a supportive sharing community. The group has helped motivate me a great deal; I feel the projects themselves have been therapeutic in my mood and overall recovery. Because of this group, I feel more free to share my work and I’m excited to show this piece to you, kind readers!
I created this project for Nervember/ Complex Regional Pain Syndrome Awareness Month. It was inspired by this awesome piece of art by Rosalie Gascoigne called “Party Piece” from 1988 (as seen below). She cut and pieced together reflective road signs- I loved the idea.
To begin my project, I created an InfoGraphic (a digital image conveying information) that both met the needs for my project as well as expressed information about CRPS/RSD for Awareness. Surprisingly, my infographic as seen below was shared and displayed by many people throughout November even though it was only created to be cut up. I used Picmonkey.com for the first time to create this poster.
Lastly, the most fun part, was cutting up the above poster and piecing it back together. (I used both Picmonkey.com and Powerpoint.) I knew it would be a tedious project, but I didn’t realize it would be so cathartic. I was cutting into pieces a poster I had spent time making look visually appealing- now it was a mess in pieces all over my computer screen and I had no idea how to reassemble it. The assemblage took so much longer than the above poster, it’s much less visually appealing and makes a lot less sense- yet the effort was so much greater. It reminded me of living with chronic illness.
RSD/ CRPS, and chronic illness cuts us into pieces, too. We have to rebuild our lives and figure it out as we go. Hopefully, we make sense of it along the way. It may not look pretty or make sense to others, but that’s ok. It probably won’t look the same as before, but we can make something new and special once again. I hope this piece is a reminder of how far you have come in making a way on your own fractured journey.
My favorite part of the finished piece is that new words and meanings emerged- if you look closely, you may find some new meanings of your own within the mess. Enjoy looking!
Thank you for allowing me to share my work with you. My 2 posters I created are free to be shared or Pinned.
A Poem Celebrating Nervember
This poem expresses the writer’s longing to help others in the midst of ongoing pain- that IS a gift! This piece really touches my heart.
This is a BRAND NEW blog. I hope you will check out some of her posts.
I asked myself what could I possibly give?
In a life that had become so difficult to live
For often my body is so wracked with pain
And the slightest movement is constant strain
With limbs on fire, but cold as ice
There was nothing about RSD even close to nice
Pain much worse than giving birth to a child
Yet strong enough to drive a weaker soul wild
Wondering how to make a difference in this life?
In a world of poverty, war, and strife
It seemed an angel whispered in my ear
The words spoken were tender and clear
You have been given a very special gift
Not a finger will you ever have to lift
Nor will you have to be on bended knee
It’s the needs of others, I want you to see
From your bed I want you to pray
Petition the Lord…
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Kathleen from Creating Through the Pain shares a heartfelt account of how her God-Father guided her after diagnosis:
Pain wouldn’t be so bad, if it didn’t hurt so much. My Godfather said these words of comical wisdom (he had many) at the end of a particularly grueling physical therapy session after my initial diagnosis of Reflex Sympathetic Dystrophy (RSD).
He made me laugh when the best I could do was a grimace. Once I started laughing I could not stop until my body doubled over my walker and I had tears in my eyes. I am sure people around me thought I was losing it! But I think that the irony of laughing amidst all that pain just set something off in my head.
I am very competitive and since I was lousy at sports (yup, I was the one always picked last for gym class—but I’m not bitter…maybe a little), I focused on academics. That competitive part of me kept climbing higher on the corporate ladder and…
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Stronger than Monsters: Chronic Pain
(Trigger Warning: Addresses thoughts of death.)
Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”
When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”
Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.
Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.
Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.
All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.
The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.
I thought I saw into my future of pain, but I could never have foreseen exactly THIS.
This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.
Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.
“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.
RSD/CRPS Challenge Day 2: Time of Diagnosis
A compelling personal story of a young woman who was diagnosed with what is known as the most painful condition to endure- at only 12 years old. This is her recalling her diagnosis.
Today is Day 2 of the RSD/CRPS Photo Challenge! I’m doing a mix of photos and words/stories for my posts. If you’d like to join in, please do! The challenge is a great way to spread awareness about RSD/CRPS while learning about each other.
Day 2: A picture of you around the time that you were diagnosed with RSD.
I don’t usually post pictures of my face on here, mostly because I don’t want people I know to find my blog. (I think that would change how free/comfortable I am with being real about everything, so I prefer to stay more anonymous…but I guess people would easily be able to figure out that it’s me anyways simply by reading what I post…) Anyways, for the purposes of this challenge, I’m adding this picture. It was taken in August of 2006, a few weeks after my diagnosis. I was 12…
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