Lynne Popadak was in her mid-thirties with a successful career in television and movie production. She loved her work and valued her relationships. Her life was full of adventure and fluidity.
On a Thursday afternoon in the summer of 2000, Lynne was leaving a modular office trailer in Century City when she fell. The stairs had not been retrofitted properly, shifting to the side as soon as stepped on them. Trying to grab the railing to brace her fall, she flew in the air. Her right ankle popped upon landing, and pain immediately radiated throughout her right side.
At the emergency room, she learned she had a torn left rotator cuff, a severe right ankle sprain and a fractured talus bone. She has not walked without crutches, braces or a wheelchair since that day. Although her initial thought was how she would manage to get to work the next morning if she could not drive, her attention soon turned to finding help. For the next few months, Lynne struggled to juggle several lives: that of holding on to her beloved career, her small animal rescue and that of pain patient.
It was an agonizing process of finding and seeing numerous doctors, attending physical therapy, undergoing tests and researching reasons why she was healing, but the pain was getting worse. She faced criticism and judgment from those treating her. One doctor even had the audacity to say – in front of interns – “It’s always women who complain about pain. They just love the attention.” It was one nightmare situation after another. Finally, after more than a year, Lynne was diagnosed with reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS).
RSD/CRPS is a chronic neurological syndrome characterized by severe burning pain, pathological changes to the bone and skin and extreme sensitivity to touch, as well as an autoimmune component. Referring to it as a unique challenge, Lynne copes daily with extreme pain and intense fatigue. She was also diagnosed with fibromyalgia in 2012. This neurological disorder causes body wide pain and tenderness in the joints, muscles, tendons and other soft tissues and adds to the fatigue. Both conditions wreak havoc on Lynne’s body. In addition, she has back pain due to degenerative disc disease and bulging discs in her c-spine.
Immediately after her diagnosis, Lynne knew she had to make a decision. She saw a need to make an active, definitive statement about her attitude moving forward. It was up to her to choose how her life would be and how she would handle this new “pain life.”
She tried her best to continue working but could not do it. Being as independent as she was, the realization that she was unable perform her responsibilities to her high standards was soul crushing. A lot of happiness came from her various careers, and she excelled at them.
The next six years were filled with a great deal of stress and profound loss. Lynne’s boyfriend left and friends disappeared. The job ended, the pain kept her from keeping other jobs, and so she no longer had health insurance. Now there were major daily workers’ comp and legal battles, and enormous medical bills. Lynne could not participate in most of the physical activities she once enjoyed and her finances were reduced to a negative. This was on top of having excruciating, unrelenting pain from a disease that no one knew anything about. The pain and frustration were overwhelming.
For Lynne, it was as much about what her life was not anymore, as it was about the pain. She found herself having to reconfigure and rethink every process, most of which we take for granted, from how to carry a plate from the kitchen to the living room, how to get in and out of the shower, hold a phone or a plate and feed her beloved animals (she had a mini-rescue and still has quite a houseful). She was living under nearly impossible circumstances, trying not only to cope with the pain, but also learn how to be in pain and still live to the fullest of her ability.
Searching for the right treatment was also full of setbacks. The only true relief she ever received followed a single morphine shot in the emergency room six years into her pain journey. For a few hours, Lynne felt like herself again and it was “sheer joy. I felt like the old me.” Sadly, the relief didn’t last.
Throughout the years, she has tried anything her health insurance has approved and her health can handle. She has undergone multiple nerve blocks, tried aqua therapy, attended intensive physical therapy focused on strength conditioning and flexibility, and was the first in California to utilize interferential therapy. Though Lynne is fairly sensitive to medications, she has at times been on large doses of most pharmacological agents with the exception of heavy opioids. She currently takes five prescriptions. Additionally, she uses lidocaine patches and has lidocaine injections along her spine every six weeks.
For the past 10 months, Lynne has been waiting for insurance clearance of another drug that holds the promise of relief. Unfortunately, her health insurance company is subjecting her to “fail first” policies. They are refusing to approve the medication until she tries – and fails – three different medications firs, all of which she cannot take due to her sensitivity to many drugs.
Lynne is a big proponent of the multi-dimensional approach to care. “We don’t only physically have the pain; we have it socially, financially, psychologically.” After years of experiencing a worsening condition, she found the USC Pain Center. There she has seen a pain management psychologist, pain specialist, and physical and occupational therapists. Having a team collaborate over her care was beneficial. Not only was every provider informed and invested, but there was better continuity in the treatment Lynne received. In fact, Lynne plays the greatest role in her continued care. “You have to be part of the conversation, not just the subject.”
While she is far from being pain free, she still has hope – or rather, determination – that there will be answers. A favorite saying comes from an Emily Dickenson poem: I Dwell in Possibility. Lynne reminds herself of those words on a daily basis. “Life is filled with possibilities and so I choose to concentrate on what may be. No one knows where, how or when their light is going to come in – all the more reason to believe in all that is possible. Granted, there are times when I can’t see through the darkness, but the sun always comes up. Find something – anything – to smile about.”
In the meantime, Lynne moves forward by staying creative. Despite her insurance calling most of the shots, Lynne refuses to let her health suffer. For her, there is no such thing as an out or an excuse. Just because she can’t attend therapy doesn’t mean she gives up. Instead, she continues her therapy practice at home – using creativity – to modify exercises, resistant techniques and strength conditioning. There is always something she can do to stay accountable, mobile and active in her own care.
When Lynne was younger, she used an old ledger book to write down everything she wanted to do. It didn’t matter if it was learning to scuba dive to writing poetry or making her own clothes – if it sounded interesting, she wrote it down. The ledger was almost full at the time of her injury. “You have to be resourceful when it comes to managing pain.”
Realizing then that her life was going to be very different, she used that ledger to find things she still had the capacity to do. What could she do that didn’t require the use of her legs? What could she do that would give her gratification and satisfaction?
The ledger became a book of endless possibilities. It gave her excitement and joy, distraction and purpose. She had always loved to write but now she had the time to tackle some of those previous dreams – like writing song lyrics or creating poetry. Art had also interested her, and now it helped fulfill her. She began beading, painting and working on more collages. If she couldn’t do something one day, she knew there was another activity she could handle. Her desire to explore allowed her to be inventive and imaginative, which resulted in her finding more meaning, happiness and pleasure in life.
A challenge for Lynne, though, was learning to effectively communicate. While she never had a problem communicating with others before pain, she didn’t know how to talk to people following her injury. An independent, strong-willed person, Lynne had trouble asking for help. She expected a lot of herself and saw strength as being self-sufficient and self-reliant. It took years for her to realize being strong meant reaching out to others and expressing those bottled-up emotions. Listening and communicating are skills, and skills require practice and knowledge. There were new skills needed, and she was going to learn.
“Most people are uncomfortable sharing something so personal as pain. And it is not always the physical pain that is the most difficult to discuss. Sometimes how we feel about the changes in our lives and how our health affects those around us is harder to convey.” Lynne believes misinformation and assumption only broaden the communication gap between the person with pain and non-suffering individuals.
“None of us choose this life. Both sides suffer greatly. That is why it has become one of my goals to help everyone understand that we have all become someone we don’t know. We aren’t the only ones who are learning and coping with our new selves. We have a whole new dictionary … our words and actions suddenly have a whole new meaning.”
A great lesson she learned – freeing her from much inner turmoil – was realizing she didn’t have to be strong all the time. Admitting she was in pain and expressing that pain did not equate to weakness (or whining). In fact, it showed courage. To be able to be introspective and effectively communicate raw emotions, without drowning in self-pity, demonstrates strength.
Lynne now speaks and writes about communication skills within the chronic pain community: caregivers, significant other relationships, friends and family. Her “It Doesn’t Hurt to Know,” series of booklets, are in the works. “I give tips for all involved. I talk about keywords, specific exercises and starter sentences, suggest do’s and don’ts, and try to do it in a way that doesn’t create animosity, defensiveness or division. It’s as much understanding as communicating. Pain patients work with a different dictionary.”
While Lynne continues to learn and grow each day, she has gained valuable insight through her struggles. She understands no advice universally pertains to all suffering just like there is no one-size-fits-all treatment or answer. What has worked for her is breaking things down into pieces. From the moment she wakes, each next step is a challenge and, hopefully, a victory. Instead of dreading one long, bad day, she tackles the day in mini-feats. She may end the day with five victories or one hundred. But she will find a victory in each day. “The weight of certain accomplishments changes, and that can be cause for celebration once the shock wears off.”
She also stresses to others that you have to give yourself permission to grieve the loss of the life you once had. Through that process of release, she recognized that not all of her was gone. Her life could still be great, just in a different way than she expected.
“Becoming your own biggest advocate is also crucial for the pain community. No one is going to fight for your care more than you do. Do research, be assertive and be bold. If a doctor is not listening, change doctors. If you’re having problems with insurance coverage or benefits, seek help. You have rights as a person, and as a person in pain. Asking for help is not a sign of weakness but rather a testament to one’s strength and self-confidence.”
Finally, Lynne hopes her fellow pain warriors find joy of any kind, and hold onto it. Volunteering has always been instrumental in her life. “By making a difference somehow, in some way, you don’t focus so much on what is missing in your life but more on what you can add to the world. Always strive to leave the day better than you found it. It will do your soul good and keep you connected.”
Throughout her pain journey, Lynne has turned to different organizations and groups for support and information. When first diagnosed, she didn’t even know enough about RSD to know what information she needed to know. Information was not readily available. It took time for her to uncover the resources that have benefited her life. With this new knowledge, Lynne has become involved in helping others. “I want to make sure that others who share their life with chronic pain can find what they need.”
She is a founding committee member and co-organizer for USC’s Quench the Fire 5K/10K Run-Walk-Roll. This event supports education, research and treatment for RSD/CRPS and other neuropathic chronic pain diseases. Her role in the organizing of this event is greatly involved, which is just what Lynne wants. She takes pride in knowing she is playing an integral part in the day’s success.
Lynne and fellow committee member Suzanne Miller also started the USC Chronic Pain Support Circle to address a need in the local community. With two amazing clinical facilitators and over 15 regular members, each month this group comes together to exchange information, resources and tools for people dealing with chronic pain.
Most recently, Lynne is beginning a program called “Create A-Way.” Lynne embraces creativity in all aspects, and Create A-Way shows the power of creativity in easing pain by increasing self-esteem and self-awareness, aiding in communications and self-expression through writing, drawing, music, crafts, problem-solving, gardening and much more. “Creativity on many levels lies within each us, enabling one to redefine oneself and help us feel whole again.” Lynne truly believes the possibilities to explore, heal and grow are endless for those with chronic pain. “We have to share what works for us. It may or may not work for others, but sharing is key.”
For over 14 years, Lynne Popadak has been living with pain and RSD. Her journey to obtain relief is ongoing, but her spirit and zest for life are unfazed. Determined to make the most of each day, Lynne sees every moment as an opportunity to change, grow and learn. Pain will not squash her enthusiasm, creativity or will to live.
“To me, everyone who has chronic pain is a hero. Pain does not have to be the end; it can just be another chapter in the book. The only option is to keep moving, even if it is side-to-side, but keep looking forward. There’s a saying that ‘If in life you trip, make it part of the dance.’ I take that figuratively and literally. My crew gave me a pair of tap shoes for my birthday two weeks before my accident, and they’re sitting right out on my bookshelf. If I don’t ever use them, there are other things out there. There is no cure now, but there may be tomorrow.”
USC Quench the Fire Run~Walk~Roll: http://www.quenchthefirerun.org
USC Chronic Pain Support Circle: http://www.meetup.com/USCCPSC/