As a self-professed Type A mover and shaker, Kristy Bergstrom was not used to living her life in the shadow of anything. She was successful, healthy, happy and enjoying her life in every way. But on January 1, 2012, her life changed suddenly and unexpectedly. It began simply. That morning she woke up with some lower back pain. At the time, she brushed it off, believing it would work itself out. Shortly after, she flew to Detroit on a business trip and quickly found herself floundering and sinking in unrelenting pain. She says the pain grew in intensity, driving her to seek over the counter remedies such as Icy Hot patches and pain relief creams, and taking up to twenty ibuprofen pills a day. Nothing touched her pain. Ten days into the ordeal, Kristy drove herself to a local Detroit ER in the middle of the night at which point they told her she had most likely pinched a nerve.
Kristy returned to Nashville where she met with her primary care physician. He agreed with the original diagnosis and while the pain was still extreme, Kristy believed that after a couple of weeks of bed rest, she would be back to normal. But by the end of January, the pain was worse. Kristy filed for a medical leave of absence from her job and was quickly forced to drop out of her Master’s degree program because she could not physically attend class. At that point her PCP prescribed muscle relaxers and narcotic pain killers for round the clock therapy as well as a multitude of tests, physical therapy, and referrals to other physicians. Cancer was mentioned, but quickly ruled out. One pain specialist tried steroid injections, but they did not help. On a scale of one to ten, Kristy says her pain level remained constant between an eight and ten. She used ice on her lower back to help alleviate the pain, but was at a loss as to how to truly manage the unceasing agony. “I couldn’t sleep. I barely ate, and spent most nights up in the most horrific pain you can imagine. When my husband would leave for work each morning, that’s when I would allow myself to really lose it. I cried and screamed into pillows. It’s an experience that at the time felt like I was living in Groundhog Day: waking up to the same debilitating existence of nothingness.”
After nearly four months of constant pain and rounds of medical tests with no answers, Kristy was sent to a Rheumatologist. Before arriving to her appointment, Kristy proactively wrote down her history, including every symptom, every doctor’s appointment with dates and names of physicians, every test and result, and sent them all ahead of time. The doctor she was seeing took the time to read what she sent. When they finally met, he told her he felt confident that he knew what the problem was, but wanted to be certain before following through with a diagnosis. After more blood tests and another MRI, Kristy finally had her answer: Sacroiliitis. According to the Mayo Clinic Staff, the simple definition is that Sacroiliitis (say-kroe-il-e-I-tis) is an inflammation of one or both of your sacroiliac joints, which are the places where your lower spine and pelvis connect. Several things can bring on this condition. For Kristy, it was the beginning of Arthritis. Her Rheumatologist told her that he had seen people go twenty years without a diagnosis because the condition is often misdiagnosed as a lower back injury. Kristy attributes her rapid diagnosis to God’s intervention on her behalf and the help of her mother and sister, both nurses, who attended each doctor’s appointment with her and pushed the system to work in her favor.
The diagnosis, while important and necessary, did not change Kristy’s situation. Instead, she found herself facing a new season of life. This new season of chronic pain has required major adjustments and life changes not only for herself, but also for her husband, Matt, and the rest of her support system. Kristy changed positions after coming off her FMLA leave and has since gone to a four day work week to help with her quality of life and ability to succeed with her job. After an open, honest discussion with her husband about the likelihood that there will come a day when Kristy is no longer able to work outside the home, they made the decision together that spending the time, money and energy for Kristy to finish her Master’s degree was not a worthwhile investment.
On the heels of that decision, came an even harder one. After five years in a townhome they both loved and spent considerable time and money renovating, Matt and Kristy decided to put their place on the market and build a one-story home. The three-story floor plan of their townhome was anything but helpful to a condition made worse by climbing stairs. It’s the little things, she says, that we all take for granted that become difficult trials for her. Climbing stairs, sitting in unpadded chairs, and driving are common activities that exacerbate her pain level easily. One thing she sorely misses is the joy of walking her dog outside without pain. Since the SI joints are some of the most important anchor joints of the body that receive constant pressure either sitting, standing, walking, or even laying down, pain associated with Sacroiliitis is easily and often aggravated.
Kristy has found relief, however, in using ice as well as heat, and swimming. She also receives massages every two weeks and has found that those regular massage sessions are especially helpful. The physical pain, however, is just part of it. Living with chronic pain has colored every part of Kristy’s life. Upon reaching her diagnosis, she began going to a counselor who specializes in treating chronic pain sufferers. Talking with someone outside of her family became an important step for Kristy to be able to process all the changes not only to her body, but to her whole lifestyle. The whole situation became a process of grief not only for Kristy to walk through, but also her husband, Matt. At first, Kristy says, Matt struggled to cope with the amount of pain Kristy was in and the complete debilitation she was facing. His immediate response was to retreat into himself and become withdrawn in his own grief and sadness. The trauma and changes Kristy was grappling with hit Matt just as hard as her primary caregiver. Kristy is quick to point out that caregivers require help just as much as the person going through the ordeal. After going through several months of joint counseling, Kristy and Matt have come together as a stronger, more cohesive force against the onslaught of chronic pain. They know better how to communicate with one another instead of withdrawing into their own private grief.
It’s that same united front that Kristy is thankful for not only from her husband, but also from her mother, her sister, and her friends. She says the best ways people minister to her are through texts and phone calls, meals made and dropped off, flowers, magazines, and thoughtful gestures such as picking her up and taking her out to run errands. Those kinds of actions support Kristy and Matt both physically and emotionally and are more helpful than well-meaning, but unsolicited opinions and advice on what she should or should not do.
Undergirding the whole journey, from the beginning to the present moment, is Kristy’s unshakeable faith in God. Some nights have seemed unending as the pain overwhelmed her and crushed her strength. But God did not abandon her. Her favorite scripture is Isaiah 41:13: “For I hold you by your right hand – I, the Lord your God. And I say to you, ‘Don’t be afraid. I am here to help you.’” In her guest bedroom, where Kristy sleeps when the really bad nights come, she has placed scriptures on the lamp shade and the wall. Psalm 119:105 states: “Your word is a lamp to guide my feet and a light for my path.” Kristy’s scripture wall has been that guide in the darkest hours, shining God’s steadfast love and faithfulness into her moments of despair. She imagines him holding her hand and neither of them let go.
God’s faithfulness to Kristy has enabled her to push forward. Still a mover and a shaker, Kristy has not and will not stop enjoying her life. She has become not only her own advocate, but a voice speaking out for others who suffer like she does. In December of 2012 she first took part in the Jingle Bell 5K run/1K walk in her hometown of Franklin, TN. Since then she has been asked to serve as their event chair and will shortly join the Middle Tennessee chapter board for the Arthritis Foundation. “I’m very vocal about my condition, much more than most that I meet, because I believe there is power in sharing one’s story. People think that arthritis only affects elderly people and it doesn’t. Even little babies can be diagnosed with it, and by sharing my story, it may help another person – maybe even a child – be diagnosed sooner and, therefore, respond to treatment better. Especially with auto-immune conditions, the sooner a patient is diagnosed, the better they statistically respond to treatment. The disease has less time to damage their body, and therefore, the patient can typically recover more quickly and have a better chance of living a quality life.”
Kristy also reaches out through the world of Twitter. She takes part in weekly Twitter chats with other chronic pain sufferers and not only receives support and encouragement, but provides it as well. After searching various hashtags like #arthritis, #chronicpain, and #invisibleillness, Kristy has found people all over the world in similar situations as her own. Reaching out and building her support system has become integral to her daily fight. “Don’t suffer in silence,” she says. “That’s what the devil wants you to think. He wants you to think you’re alone and you are anything but alone in your pain. Yes, it’s isolating, but there are others out there who do care and do understand what it’s like. You just have to be willing to reach out and find them.”
She gives the same advice to primary caregivers as well as family and friends who find themselves in the role of supporters for chronic pain sufferers. Facing it all alone is not the answer. Communicating and standing together makes the difference.
Since beginning her journey with chronic pain, Kristy has undergone huge alterations in her personal and professional life. Many of them have been difficult. But one in particular, has been sheer fun. After her best friend, Jami, made the decision to move from Dallas to Nashville, Kristy and Jami made the leap to start their own business together. Not content to be driven into seclusion and misery, Kristy takes life by the reigns any chance she can get and from that passion and exuberance, YB Plain was born. YB Plain is a wardrobe styling business in which Kristy and Jami help people to choose a wardrobe that makes them look and feel fabulous in their own skin and in their clothes. “Picking out and putting on a great outfit each day is pretty much the only thing I get to control anymore. No matter how much pain I feel, I think it’s important to dress up and show up for the theatre of your life. The devil may have my joints, but he doesn’t have my fashion sense! It’s my way of saying ‘Screw you’ to the pain.”
That zeal and passion for life is why chronic pain does not define Kristy Bergstrom. It is part of who she is, but it is not all that she is. She is a child of God who knows that one day, in this life or the next, God will redeem her body and give back everything that has been robbed from her. Dreams deferred will be fulfilled and her pain will be no more. Until then, beauty is still born from ashes, one day at a time.
(If you are interested in Kristy’s fashion business, please visit www.ybplain.com.)