"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5:3-5
THE VOICE OF THE BATTLE
Chronic Lyme disease is a controversial condition in which its very existence has been questioned. This mysterious illness is gaining public awareness thanks to the courageous warriors who have come forward with their stories of bizarre and often-times debilitating symptoms associated with the disease. Although some have fully recovered from Lyme with long-term use of antibiotics and/or alternative therapies, there are also those who do not respond to treatment. Their symptoms can persist for years. While, I am thrilled for those who have conquered the disease, I believe it is necessary to also raise awareness about the daily long-term struggles that others experience battling chronic Lyme and related conditions. Sally has been battling this devastating disease for more than four years. In 2012, Sally and I were introduced to each other through the church prayer team. Since then, we have built a supportive friendship of compassion and understanding for our daily battles. Sally agreed to be a voice for the battle of Lyme by sharing her story; however, the emotional and physical scars of the battle are still fresh, and she has requested that her identity remain anonymous.
IN THE TRENCHES: SALLY'S STORY
"Be strong and courageous. Do not be afraid or terrified ... for the Lord your God goes with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8
Sally was an energetic young woman who prided herself in taking good care of her body by exercising regularly and staying active. With a new career in the medical field, a beautiful home in the Twin Cities, a caring husband, and her second son on the way, it seemed like she had it all. About a year later, in the summer of 2011, Sally suddenly began to experience numbness in her extremities. The numbness started in her hands and then spread to her calves and other parts of her body. She also noticed pain and unusual coldness in her hands and feet. She experienced weakness like she had never known before and had extreme difficulty walking, ascending stairs, pushing her son's stroller, and navigating a shopping cart. Sally was afflicted with excruciating pain in her hip accompanied by spasms and muscle tightness. She observed that her leg seemed to lock up when she walked. It seemed like her brain wasn't communicating properly with the rest of her body. Sally also experienced brain fuzziness and short-term memory loss.
Sally and other members of her family worked in the healthcare field, and she was knowledgeable about the functions of the body as well as impaired mobility and cognition. Unfortunately, her own mysterious condition had stumped her as well as medical practitioners involved in her care. She was desperate to find someone who could identify the source of her physical and cognitive impairment. Over the course of three years, Sally had been examined by at least seventeen doctors and health care professionals, including general practitioners, neurologists, orthopedic doctors, chiropractors, rheumatologists, and physical therapists. Sally received a series of tests including an MRI, EMG's, and various blood tests. The tests ruled out MS, Guillane-Barre, ALS, and other related conditions. During Sally's evaluations, the practitioners had a variety of explanations for her symptoms. Some doctors reported that nothing was wrong with her, she had a conversion disorder, and her symptoms were psychosomatic. A practitioner once told her, "A hundred years ago, people would call what you have hysteria." Another doctor watched her leg buckle every few steps when she walked and asked her, "Are you trying to walk like that on purpose?" At one point, she was diagnosed with a non-specific connective tissue disorder. One of the practitioners referred Sally to the Mayo Clinic for further evaluation; however, they declined her case stating her condition was not serious enough. Sally tried a variety of treatments including thirty days of prednisone, antibiotics, steroid injections, and physical therapy. None of the treatments helped and the physical therapy only worsened her hip pain.
Sally was no longer able to perform the physical requirements of her facility position and was forced to give up her job. Sally and her husband also decided to sell their home because it was difficult for her to climb the stairs in their house. They purchased a smaller one-story house and moved across the river into Wisconsin. Shortly after that, in the fall of 2012, Sally was evaluated by an occupational medicine doctor who suspected she had Lyme disease. The practitioner treated her pelvic instability with a SI (sacroliac) belt and referred her to an internal medicine doctor who specialized in Lyme. The Lyme specialist provided services through a complementary health clinic that utilized both conventional and alternative therapies. After being diagnosed with Lyme disease through the process of elimination, Sally began a regimen of multiple antibiotics, supplements, and natural remedies. A naturopathic practitioner also put her on a restricted diet, eliminating gluten, dairy, and refined sugar. Sally noticed some improvement with use of the SI belt, Lyme treatments, and diet changes. Her mobility improved and the pain decreased; however, she continued to struggle with tightness in her hip, intermittent numbness, and neurological problems. After approximately eight months of treatments, the specialist informed her that tests indicated the Lyme was no longer active in her system. He believed her ongoing symptoms were from "residual effects" of the disease. He suggested she take a break from the natural remedies and other therapies before trying something different.
In three years, Sally had spent thousands of dollars on doctors, tests, prescriptions, and therapies for Lyme without full recovery. She was left feeling discouraged and uncertain as to what to do next. A few months after stopping Lyme treatments, Sally was introduced to a couple of graduate students in the process of completing their training in the Field Control Therapy (FCT) Graduate Program. They offered to include Sally as one of their FCT case studies, collaborating with their instructors to examine Sally and provide alternative therapies to treat her condition. By doing so, the FCT practitioners verified the presence of both Lyme and the co-infection bartonella in Sally's system. They also uncovered additional root causes for her long-term debilitating symptoms. Sally finds FCT to be challenging because the healing process has been extremely slow for her. Sally noticed that her symptoms would worsen when addressing specific conditions and root causes. She was also required to avoid exposure to electromagnetic frequencies (emf's) (cell phone, computer, television, etc.) while doing the therapies, which has been difficult for her. Despite the slow healing process, Sally has gained more insight about her body and appreciates the compassionate and thorough care she has received. "They are wonderful, supportive, and generous practitioners that have told me that it isn't in my head. They have found many things stressing my system. I hope that when we address some of these problems, my healing process will speed up."
BATTLE WOUNDS
"Be kind, for everyone you meet is fighting a hard battle."-- Plato
Sally has been afflicted with both physical and emotional scars from her painful battle with chronic Lyme. It has been frustrating for her to give up her independence and rely on others. Sally's husband often works long hours and travels days at a time for some of his jobs. He has been very supportive of her situation; however, their daily battles create marital tension. When her husband is unavailable for long periods of time, it is physically demanding for Sally to manage their two sons. Sally has been creative and strategic in keeping up with them, taking them places, and involving them in activities. Shopping and other basic errands have been challenging tasks for Sally to engage in. Early on, Sally was unable to ambulate long distances, needing a wheelchair for mobility. For a while, she used a handicapped sticker to help ease the walking distance. Unfortunately, strangers were sometimes rude to her by swearing and making accusations about her using a handicapped parking spot.
THE ULTIMATE HEALER
"Come to me all, you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Matthew 11:28-29
Sally's faith has been the rock and the foundation of her hope through these painful years. Sally uses Christ as her example and guide towards coping with her daily struggles and past battle wounds. She has worked towards forgiveness and patience with others and strives to live as Christ has called her. Although the "stinking thinking" (as she likes to quote author and speaker, Joyce Meyer) sets in once in a while, Sally strives to embrace life with an attitude of gratitude, focusing on what she is thankful for instead of her losses. Sally was forced to give up her independent lifestyle and beautiful home for a more humble abode and way of living; however, she has found blessings in these changes. Sally now gets to be at home with her sons and spend quality time with them on a daily basis. She feels at peace residing in a beautiful riverside community away from the hectic city. Sally has also found refuge at her new church. She is involved in a mom's group and has become acquainted with women who minister to her needs and support her. "It seems like since I have moved, things have come together for us in a divine way. I often see God working in my life through others providing our family with meals, getting rides to appointments, receiving small gifts and surprises, and other needs coming just at the right time. Our needs are sometimes met even before I have asked the Lord for them."
Despite the pain and struggles, God has transformed Sally's life and her faith through this experience. Sally more fully comprehends her relationship with Christ as her ultimate healer and her savior. Prayer and daily trust in God gives her hope and gets her through each day. "My faith is stronger now. Prayer has helped me more than any medicine could."
WAITING ON THE LORD
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:28-31
Sometimes the most difficult part of suffering through years of health challenges is the waiting. These seasons of waiting can be a heavy burden for the soul. Our anticipation for Christ's return intensifies with such tribulation. Sally trusts God to give her strength to "suffer well" by His grace. During the tough days, she clings to God's word and believes His promises. She doesn't give up hope for her breakthrough and healing. My prayer for Sally is that she will come to the other side of her painful experience, boldly proclaiming what God has done for her in this long season of waiting on the Lord.
"Our soul waits for the Lord; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O Lord, be upon us, even as we hope in you.' Psalm 33:20-22
RESOURCES
*The information in this article illustrates an actual real life experience with chronic Lyme disease. The name of the individual battling Lyme has been changed to protect that person's privacy.
For more information about chronic Lyme disease:
http://www.ilads.org/
To learn about my personal battle with chronic Lyme, visit my blog:
http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html
For resources and information about coping with chronic conditions:
http://restministries.com/
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