You have every right to say that your days are bad from diagnosis onward. Pain roars and screams and spreads and bites down. It truly touches every part of our lives, and tries to destroy all that it touches.
But you are not your body. You are more than flesh and bone.
You have the power to tell your story the way you want it heard.
You don’t have to choose whether your days are black or white, either good or bad. This isn’t a multiple choice test between succeeding or failing.
We are all striving to find balance every day, moving forward despite our circumstances, seeking our best selves.
That is a victory.
World Aids Day 2017
So much progress has been made for a killer autoimmune disease/infection/virus that was once surrounded by so much prejudice and misinformation.
Healthcare was far out of reach. Doctors did not seem to understand. The public turned their backs.
Meanwhile men, women, children, and infants were infected, without care, suffering and passing away.
So much has changed in a relatively short period of time. Still, there’s a long way to go, especially internationally.
Maybe you have a chronic pain condition and feel as though doctors, society, and family have singled you out as a drug addict. Maybe you’re being denied treatment. We continue seeing our own friends in pain pass away due to lack of care… Or if you’re a rare disease survivor and are feeling hopeless about the healthcare situation at hand, please keep this hope in front of you.
If the HIV/AIDS community could create a revolution for themselves in the midst of such a horrific crisis, please keep hope alive that we can also. But we can only do change the system if we stay united.
#worldaidsday #hivawarenessday #raredisease #rarediseaseday #sicklivesmatter
It’s not free.
It’s not “regional,”
And it’s not seasonal.
They say it’s like fire, but it’s so much more.
Like pieces of yourself scattered on the floor.
It’s not free.
It will cost, and it will take.
People will think your pain is fake.
You’ll feel it in your body;
You’ll feel it in your soul.
It can start when you’re a kid;
It can last until you’re old.
It’s not free.
Your family will pay.
Some will behave in a different way.
Some try to help;
Some go away.
Some can’t stay to watch you change.
It’s not free.
It moves and grows in ways you cannot know.
You adapt…you can flow.
You can bend,
You can throw caution to the wind!
It’s not free.
You pay the toll;
You walk the road.
Share some coins;
You’re not alone.
Today is Color the World Orange Day! This is an annual international campaign to raise awareness and funds for chronic pain research. Please participate by sharing something orange to social media (or to your blog) with the hashtag #CRPSORANGEDAY. Thank you!
First published on a blog called “no one gets flowers for chronic pain”, she posted this just after brain surgery. Please click the link below to read in its entirety.
“Most of us are going to face tragedy in our lives and we have to go through the grieving process of those tragedies before we are able to reap the benefits of loss or sickness. We do not see the light at the end of the tunnel most of the time because the tunnel is the light.”
…”and then I fell apart, and it was the most beautiful moment ever, because right then, I realized that I could put the pieces back together the way I wanted them to be.”
I recently read an article from http://www.thedailygood.com that explained the changes in people who have faced extreme trauma. Most would think the article would be quite depressing as people who are faced with extreme trauma such as a death of a loved one or in my case brain surgery/chronic pain, the changes in ones self would be mostly negative and in my case/my trauma the affects were extremely negatively until I totally and completely fell apart and that was the most beautiful moment of my life because it was the moment I began to live.
If I heard that a person had a near death bike accident that resulted in brain surgery, I would think that…
View original post 676 more words
Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another.
I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan.
This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it.
I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps.
I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way.
It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe.
In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids.
Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s.
There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades.
I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”.
The door slides again. I step back through the wormhole.
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.
This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling.
This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone.
There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life.
I’m not entitled to any other existence.
This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future.
It’s not over yet.
These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.
There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.
Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort.
It may take all you have and more, but you are indeed needed in this world. Never, never give up.
Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain.
I believe in a loving merciful God who lends strength when we get to the end of ours.
I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.
Hugs gentle warrior.
Please share below how you continue to press on despite seemingly insurmountable challenges.
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.