Hello everyone! My name is Sue Larson, and I am very honored to be asked to share my story as a zebra in the hopes that someone else can relate to my experience and perhaps feel less alone. I am what you may call a reluctant but grateful zebra. Reluctant because, let’s be honest, no one wants to have a chronic disease or be labeled as sickly, but grateful that there is a loving community that supports those of us who feel alone with our challenges.
Briefly, I have been managing Grave’s disease, Grave’s eye disease, and Hashimoto’s (all autoimmune thyroid disorders) since 2014. My thyroid had to be radioactively ablated (destroyed) because it was so damaged and diseased after I was misdiagnosed for several years by a male PCP with…get this… “menopause.” You have no idea how many functions your thyroid controls until you lose it! (Per my list of symptoms below, you will get an idea). Who I really am though, is someone who cherishes family, grandchildren, friends, cooking, baking, reading, my silly old beagle, tending my yard, which is my favorite place on earth, creating a couple dozen pots of flowers to adorn my porches every spring (with muscle from my husband), and taking nature photos of our beautiful three acres. I also have a penchant for watching deer in our small orchard and giving TJMaxx all the business I can afford.
5 Invisible Symptoms
- Insomnia, anxiety, brain fog, erratic heart rate, disruptive hot flashes.
- Chronic nausea, food sensitivities (especially gluten intolerance) and GERD.
- Debilitating hip and shoulder pain, fatigue, exercise intolerance, foot neuropathy, plantar fasciitis.
- Vision issues including light sensitivity, chronic dry eye, and blurred vision. Also, hair, eyelash, and eyebrow loss.
- Ear ringing, hearing loss, unpredictable auras, and migraines.
I also had a stroke in my eye in May of 2022 and had a mitral valve repair in October of 2022.
4 Things That Help Me Manage Pain
- Ice, heat, and a foot massager.
- Walking my dog because he is so dang funny, and he always cheers me up.
- Reading and hot baths.
- Floating in our pool and laying in my hammock because both take the pressure off my sore spots.
3 Ways My Life Has Changed
- I cannot travel very far because my hips hurt after only 20 minutes in a car. I must take a few baby steps every time I get up from a sitting position because my hip feels like it may go out.
- I cannot walk, stand, or sit very long without my feet or hips throbbing. My shoulder never stops hurting…ever. I can never sleep on my right side because of the sharp, searing pain in my shoulder, which has been frozen three times and never fully heals. I have tried every therapy you can imagine over the past ten years to resolve my hip and shoulder pain, including ultrasound therapy, water therapy, acupuncture, dry needling, osteo therapy, trauma therapy, Reiki, massage, counseling, chiropractic manipulation, dozens and dozens of rounds of physical therapy and countless injections. Most practitioners chalk this inability to heal up to my autoimmunity, but I really have never gotten a definitive answer. I believe I internalized years of profound trauma and stress and that it finally manifested as disease in my body that set up shop in my neural response system. I’m still searching for how to box it all up and move it on out.
- I must “save myself up” for outings such as grocery shopping, playing with grandkids, gardening, hosting dinners, going to weddings, attending a basketball game, etc., and then it often takes several days to recover after I do these seemingly normal activities. In other words, if I play, I pay. Random auras and migraines (I have about 8 a month) also prevent me from carrying out plans and, to my embarrassment and dismay, I often disappoint people, which is the biggest, most consequential part of my challenges. I hesitate to make any plans or be very social because I never know when a particularly painful day will strike, and I will have to bail on people. Consequently, I tend to isolate myself and have voluntarily lost many friends and contacts because I hate to be “that woman” with all the problems and complaints.
2 People Who Inspire Me
- My Mama. Although she has been gone for 19 years, I never realized until I was having problems of my own that generational trauma caused her to have so many of the same challenges I now have. That tough, but tender woman persevered, though. Through chronic migraines, deafness in one ear, anxiety, a stressful work environment, insomnia, crippling arthritis, neuropathy, and the most devastating kind of trauma anyone could ever experience, she and my dad raised three compassionate kids who, ironically, never fully gave her enough credit for her lifelong struggles. She is my hero and the person I want most to call every single day.
- My husband. He gives me the grace and the patience to just let all of this be. He accepts that our retirement is not what we hoped it would be and he never complains that we spend so much time at home or at appointments or chasing answers. He was THE BEST nurse after I had open heart surgery in October of 2022 and the gratitude I feel for his unwavering love and support is indescribable.
1 Thing You Want People to Know
You are not your disease. You are still you. Hold on to that person harder than you hold on to your disease. Give yourself grace, which is something I personally struggle with. If you want to be everything to everyone, acceptance and healing will never be within reach. Love yourself most.