May 19, 2019

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May 19, 2019

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Carol Hyde

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St. Paul's United Community of Faith Milton

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May is Lupus Awareness month. Megan Friedman shares her journey below: Wings of Steel: The Grit Behind the GraceMy Life with Chronic IllnessBy Megan Friedman“Difficult times have helped me to understand better than before how infinitely rich andbeautiful life is in every way, and that so many things that one goes worrying about are ofno importance whatsoever.”—Isak DinesenAt 37 years old, I have come face-to-face with my own mortality more than most peoplemy age. When people hear my story, they often say, “Well, God does not send you more thanyou can handle!”—a sentiment meant to be comforting, but one that leaves me asking, “Uh oh,how much MORE does God think I can handle?!”At 24, I began learning to expect the unexpected. I was a graduate student living inWaterloo and quite athletic—a gym rat who loved lifting weights, attending hot yoga classes,and running long distances. I even participated in races throughout southern Ontario with myfamily.After a walk in the woods in July 2012, I never imagined my health was about to changeforever. In the days that followed, I developed what felt like a bad flu, which then progressedinto widespread aches and pains I dismissed as workout-related injuries.As the disease progressed over the following months, I found myself spending most ofmy time in bed, surrounded by food and water on my nightstand. Pain in my joints made theshort walk to the bathroom feel insurmountable. I began typing my master’s thesis in bed, usingonly my index and middle fingers—the least painful ones.Soon, neurological symptoms developed. My hand-eye coordination deteriorated, and Ibegan using plastic cups and plates because I was constantly dropping things. The room wouldspin, my legs would give out unexpectedly, my eyes became sensitive to light, and one side ofmy face went numb.Today, Lyme disease is more widely recognized, but at the time, it was often overlookedand not considered to be very prevalent in Ontario. Ticks can carry multiple diseases—including,in my case, Lyme and West Nile. I was bounced between specialists who speculated diagnoseslike MS or Parkinson’s, but mostly I heard, “You have something outside my area of specialty,”or the particularly damaging, “You’re 24 and single—are you sure you’re not just making this upfor attention?” Like many women, I still marvel at the sexism embedded in our medical system.At my worst, I lay in bed staring at the ceiling, having slept all day, thinking: “I’m going to die,and no one will ever know why.”In October 2012, thanks to my Mom, a trained emergency RN—piecing together thetiming of symptoms after the forest walk in July, I was diagnosed and treated for Lyme Diseaseby an infectious disease specialist at Juravinski Hospital in Hamilton. I had dismissed the bugbite from that day as a bad mosquito bite, but upon describing the bullseye rash, the doctorconfirmed it had been a tick bite.“Above all, be the heroine of your life, not the victim.”—Nora EphronThough I completed treatment, I never felt quite right again and never returned to myformer self. Still, the joint pain and neurological symptoms subsided for a time, which was ahuge relief.In the fall of 2017, familiar joint symptoms returned—this time joined by new ones:rashes, blisters, and hives. For many autoimmune patients, it takes up to seven years to receive aproper diagnosis. That wait includes delays in seeing a rheumatologist, extensive testing,frequent dismissals by healthcare professionals, and misdiagnoses.Fortunately, my family doctor referred me quickly, and I was seen within months. Aftermuch testing and imaging, I was diagnosed with Undifferentiated Connective Tissue Disease(Incomplete Lupus) and Rheumatoid Arthritis. These autoimmune diseases cause the immunesystem to attack healthy joints, tissues, and organs. A major challenge is finding the rightcombination of medications to manage inflammation, alleviate symptoms, and limit damage. Iwas told that developing autoimmune disease after a systemic infection like Lyme is common—aphenomenon called post-infectious autoimmune disease.With skin and joint symptoms, I had to adjust to a new normal. Autoimmune diseasesoften involve periods of remission and flares. Lupus is nicknamed “the disease of a thousandfaces” because it manifests differently in every person. For me, flare triggers include sunexposure, extreme temperatures, stress, illness, and overexertion.After diagnosis, it took two years to stabilize and find the right medication combination.Once I found my “secret formula,” I enjoyed 18 months of remission.Sadly, amid the pandemic, I relapsed. By fall 2022, my medication was no longermanaging my symptoms. I began a seven-month process of starting biologics—powerful antiinflammatorydrugs—to stabilize my health. The treatment worked, and my lost mobility beganto return.In Indigenous beliefs, the butterfly symbolizes transformation. It is also the emblem ofLupus, representing the butterfly-shaped rash across our cheeks and noses during a flare. Just asthe caterpillar is never the same after its transformation, a person with a chronic illness emergesforever changed. I like to think I have been changed for the better.“Serenity is not freedom from the storm, but peace amid the storm.”—UnknownThis past September, I entered a new phase of my illness. After a bout of bronchitis, Ibegan experiencing breathing issues and sudden voice loss. By October, I was having asthmalikeattacks triggered by talking, laughing, or strong scents. By mid-November, these episodeshad intensified so much that I left work in an ambulance.By late November, I had to sleep upright due to breathing difficulties. In December, Ideveloped chest pain from inflammation in the sternum. At my worst, I could barely climb stairsor walk to the bathroom without gasping for air.The following months brought multiple ER visits, a referral to a respirologist, andnumerous failed treatments. By March, I was prescribed a second biologic, this one specificallyfor my lungs. In recent weeks, I have seen small improvements and am slowly tapering off someof my medications.Recovery is a slow burn. Reducing medications causes challenging withdrawalsymptoms, which leave me feeling ill for half the week. It takes a village of medicalprofessionals to support my progress, and I am deeply grateful for their guidance. Much of myrecovery depends on me maintaining strict routines: daily walks, rest, healthy eating, as well asmindfulness meditation to help manage stress. Though I have been diagnosed with two newconditions, my doctors believe these are manifestations of my lupus and systemic inflammation.“Our faith is built in the dark, in the valleys, and during the back-breaking battles in life.”—Dana ArcuriThese years of health challenges have been a rollercoaster of lost and regained faith.There have been times I was not “on speaking terms” with God, as I was filled with fear aboutthe future. I have always returned to the traditions I was raised with, seeking meaning insuffering. Accepting that my future is in God’s hands has brought me peace.During prayer and meditation, I am constantly struck by the miracles I haveexperienced—receiving the right diagnosis and care just in time, and avoiding permanentdamage. This grace allows my medications to maintain a reasonable level of health, which I seeas nothing short of miraculous.Illness humbles you. It teaches you to pray not only for healing but also for meaning. Ihave been gifted with an understanding of suffering that deepens my compassion. I value thegood days more, knowing that bad ones can strike without warning. A famous Buddhist sayingresonates with me: “(p)ain is inevitable; suffering is optional.” For me, avoiding sufferingmeans not comparing myself to others, embracing my unique path, and recognizing each day as ablessing.I have prayed for my illness to have meaning and purpose. In doing so, I have felt calledto help others living with chronic conditions. In Judaism, the Talmud teaches: “The one whovisits a sick person takes away 1/60th of that person's pain” (Babylonian Talmud, Nedarim 39b).This quotation inspires me to share my experiences to help others.Through my role as a teacher, I have supported students with disabilities and chronicillness by being open about my journey. Normalizing disabilities in our culture helps to raiseawareness about accessibility needs and fight the toxicity of ableism. Volunteering with LupusOntario and engaging in advocacy work has introduced me to incredible people and made othersfeel less alone. Educating the public about autoimmune disease helps accelerate diagnoses andreduces suffering.This is not the life I planned, but I am grateful for the blessings that have come from walking thispath.“Love is patient, love is kind. It does not envy, it does not boast, it is not proud... It alwaysprotects, always trusts, always hopes, always perseveres.”—1 Corinthians 13:4–8In closing, this reflection is dedicated to my husband, Lenny, who lives his weddingvows every day. He is my rock, the love of my life, and my unwavering support. When we said“in sickness and in health” just two and a half years ago, we had no idea what challengesawaited. Lenny has been an incredible caregiver throughout our relationship. He never hesitatedto date me when I told him about my illness. In fact, he said Lupus revealed my strength—andthen got down on one knee, asking if we could face it together for life. Thank you, Lenny, forshowing me the true meaning of unconditional love and for the gift of our life together. ... See MoreSee Less

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Your Lupus Ontario membership will expire on December 31st of each year. Once again this year, we are asking that you include a research donation.

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May 19, 2019

May 19, 2019

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