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.
My favorite place to wish to be as a child was always Disneyland. My father would promise us trips to the Magic Kingdom, but we were never able to go. When I was a senior in high school, I had an opportunity to see Micky’s House during Grad Night. It was surreal. Twinkly, sparkly fantasy-packed happiness all around. I was mesmerized… and alone, but I didn’t care. I made the most of it. I thought about that night fondly as I aged and considered Disneyland to be the magical place everyone else knew it to be.
Guest Entry written by Jennifer Anderson
Fast forward 22 years and there I am laying on the couch with one leg attached to a machine that makes circulation more appealing to my body via electric shock and the other kicking pill bottles around. I had a bad surgery that led to Septicemia. An infection had eaten away at my foot to the bone and there had been talk of amputation. That was all behind me now, and the final outcome was a bone that wouldn’t heal and a diagnosis of Complex Regional Pain Syndrome (RSD). My world crumbled. My stars went out. My light was just a flicker. I was destroyed. Disseminated. The grief of never walking on my own again and the burning pain that never eased up was just way too much for me to deal with. I spiraled into a deep depression. Weeks passed and I just got worse. I would sob from the pain and just sort of check out when I was being talked to. I was quietly dying inside. My husband saw this and made a plan to attack that CRPS right in its ear. He packed me up, put my wheels in the car and started driving.
This little adventure was no fun for me and I let him know it. Where could we be going that required me to be trapped in this moving nightmare? Why? I sobbed. Why? I fell asleep. Too much pain and too much moving just knocked me out. When I woke up I was at a hotel. I remember thinking what a pretty hotel this was. My husband wheeled me across a woodsy looking parking lot right up to what I can only describe as paradise. It was the Grand Californian Hotel in Anaheim. I knew right then where I was. For those few moments I can honestly say that I felt no pain. My senses were all so alive and my heart was so full I just burst into tears. I do that so much, more often now from being happy than anything else, but those were my first happy tears in a very long time. Maybe even my very first ever. Disneyland became my secret cure. My big distraction. My safe place. I had fallen upon Valhalla and there were mouse ears inside.
That six hour car ride was the beginning of what I now consider my new lifestyle. We drove 375 miles each way every other weekend for a year. With each visit I became stronger, more confident in walking and best of all I grew so much closer to this man who saw me suffering and did what he thought would help me. It’s really hard to be unhappy at the happiest place on earth. You’ve got to want to be miserable with so much magic all around. Every child I rolled by who was also in a chair, every parent pushing them and every injured person who struggled to keep a smile on while suffering endless steps of pain just put me in awe at my own sadness. How could I sit here and cry about myself when there are children visiting today that might not be here tomorrow? I found myself asking this question over and over. My answer came slowly after every visit. This won’t beat me. I will walk again. I’m not dying; life is just different. By the end of my first year of Disney rehabilitation, I was able to walk without a chair, a cane or even a hand to lean on.
I can no longer work. I know I could probably craft away at home and make something but I’ve been there and I’ve done that, and frankly it just reminds me of misery and recovery and nothing of living. I polled my family and friends about what they would do and where they would go if they could do anything or go anywhere. I had many responses. Some ideas were to travel away to exotic islands or visit famous landmarks like the Grand Canyon or the Statue of Liberty. Others included long flights to foreign countries or train rides up the California coast. My husband said he would travel the world and take me away to every Disneyland because that’s where I am the freest and happiest Jen he’s ever seen. Together we hatched a plan of all plans to make this magic last. I was alive again and I had big plans.
Living with CRPS is literally a living nightmare. I refused to take any of the medications I’ve been prescribed because they make me comatose, lethargic and extremely forgetful. I choose rather to treat my symptoms with nutrition and exercise and NO it’s not a cure but it makes my life manageable. I cling to my routine because I know that if I stray I will suffer. Since the sepsis and initial diagnosis it’s moved up into my right arm and hand in addition to my right foot and leg. I take copious amounts of vitamin C, D, B, chlorophyll, I juice and I removed sugar and dairy from my diet. These steps keep me in low pain rather than the zinger flare ups I get when I ignore the warning signs. I find myself planning to run away constantly because I know there’s a Disneyland visit on the other end of this crazy train.
Since that first car ride three years ago I’ve grown stronger and wiser about my health and my pain management. I fly but with many precautions and a very sound plan of attack should I have a flare up. I don’t let my disease stop me. So far I’ve visited Euro Disney just outside of Paris twice. Once in the Spring and once in the fall. I’ve explored Tokyo Disney during cherry blossom season in the spring and most recently for my birthday in October. We traveled to Walt Disney World for Christmas after taking a holiday cruise to the Caribbean last year. I now know that Hong Kong Disney is the smallest in the world but they have some of the coolest attractions on the planet. My favorite is a triple tie between Anaheim, Tokyo and Paris. Nothing can compare to Disney California Adventure, Disney Sea in Japan or being so close to Paris at Euro Disney. I love Epcot because it’s the quick way around the world and the rest of Disney World is awesome but just way too large for me. I loved the Hong Kong version of The Haunted Mansion called Mystic Manor. They also have a Toy Story Land that made you feel like you were just another toy in the box. Hong Kong Disneyland is super cute but so small it can be thoroughly explored in just one afternoon.
Now, no matter where in the world I am, I know that somewhere there’s a Main Street U.S.A. waiting for me to skip down; stuck in this body of hope, at the happiest place on earth.
Our Guest Blogger, Jennifer Anderson has collected over 30,000 photos from her travels around the world with her husband. Jennifer graciously shares her photos and escapades with her friends in pain to lift their spirits. She has a special interest in healthy eating, style and has a fresh perspective on life. Thank you for your magical contribution to CRPS/RSD Awareness Month, Jennifer!
This post was featured on The Spoonie Daily E-Magazine!