Leslie Varko
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1
I don’t remember a time without pain. I spent the most of my life with migraines and ear infections monthly and then diagnosed with endometriosis. I didn’t realize that most people don’t experience such severe pain regularly until I was in high school. It took years of adjusting to the reality of unknown autoimmune diagnoses and managing the symptoms and getting no answers. During this time, I was in two major accidents four weeks apart. My car flipped down a 100 ft ravine and I walked away with spine and head injuries. While rehabbing from the car accident, I was hit during an International Bike Race and thrown over a 5 ft. fence. I regained consciousness as I was wheeled into the ER with another concussion, sprained ankle and more back issues. Months of rehabilitation and physical therapy helped me function on a daily basis but there was always underlying pain. I didn’t know the difference between good and bad pain so I continued to be active and move while doing additional damage. After compensating for the pain from the injuries, I stopped using my major muscles. Using only my minor muscles altered my gait and body alignment and increased my mobility and arthritis issues. After finding the right doctors and months of tests, MRI, Xrays, etc. they determined my spine was pinching nerves and I have osteo arthritis, and achilles tendonitis (and inability to flex my feet). With a plan in place, I continued to have weeks where I couldn’t walk or put any pressure on my foot. While I was happy to have this addressed, the unknown autoimmune issues were causing more serious problems and multiple ER visits a year. My allergies were affecting my asthma and causing me to have hives and anaphylaxis. Years of doctors visits and tests and still no reason why this was happening. In 2013, I found an amazing Allergy & Immunology doctor, he ran a new set of tests and determined I have Autoimmune Urticaria & Anaphylaxis. I carry epipens, a slew of meds and prednisone and a list of steps to take when a reaction starts to avoid the ER. It wasn’t until a new drug came out to manage asthma & autoimmune urticaria that I have been under control for the past few years. It’s been a lifesaver and for the first time in many years I have moments of peace.
Most days, I wake up with pain in my hip/back. Lately my allergies are out of control and I am constantly itchy and sensitive to touch. Last week, I couldn’t put any pressure on my foot for three days. The unknowns are the hardest. I’ve had days where I am in tears at the end of the night because I can’t get up the stairs. It’s at those moments that I worry what the next 45 years might be like knowing how much I hurt now. Prior to COVID, my husband travelled almost all year so I was the primary caregiver for our child. We have no family in the area so everything falls on me. No matter how I feel, I still have to get him to school, activities, etc. I have learned to push past the pain and make things happen. There’s no other option. Some nights I breakdown and just cry and hope the next day will be better. I’ve learned to adjust my expectations of how much I can accomplish depending on how I feel. I am more aware of how to take care of myself and listen to my body.
2
I have found that during stressful times my inflammation and pain increases dramatically. When I don’t take care of my body, I have a hard time moving or I have a reaction. I’ve seen the benefits of meditation with change in diet and exercise. When I’m calm, my body is calm and not reactive.
I’ve been openly honest about my mental health and believe it’s so important to have a team. I’ve been seeing my therapist for over 20 years and she’s instrumental in getting me through bad days and reminding me it will get better. I suffered from depression during fertility, pregnancy and post-partum and it was essential to have those around me step up. I’m fortunate to have a partner who is extremely understanding and supportive. I couldn’t do this without him. Honestly, my family and friends have been extremely supportive and available to help out over the years.
3
It definitely affects my relationships because I really have to keep to a strict schedule and diet to make sure I keep inflammation under control and feel well. I know they wish I could be more spontaneous or even stay up late on weekends and even drink. When I do make exceptions, I have flair ups, migraines or can’t walk. For me, it’s not worth the pain for a night out. While family and friends do understand, I’ve explained it to them many times, I know it would be easier if I could just go with the flow and not have to be difficult. All our vacations have to have an “evacuation plan” in case I go into anaphylaxis. We can’t just book a cruise or a trip without thinking about “what if”.