“It was Valentine’s Day of 2017. I was 28 years old, active duty Air Force stationed overseas. I’d been healthy my entire life and all I’d ever dreamed of was serving in the military. I loved my job — though it was very physically strenuous, and the leadership was awful, I liked the work and my coworkers. I was in Honor Guard and loved every second of it. I loved to run. I ran 5-8 miles every weekend and completed my first half marathon while I was over there.
And that morning, Valentine’s Day of 2017 around 1 a.m., I woke up the sickest I’d ever been. Supposedly, it was norovirus. My husband got it as well about 12 hours later. Only he got better and I never did.
After several weeks of still being sick, I started going to the doctor and seeing specialists to try to figure out what was going on. The doctors couldn’t figure out what was wrong. I was at the ER several times a week and constantly at the doctor begging them to help me. I saw doctor after doctor, I dropped from 196 pounds to 128 pounds in about 3 months. I wasn’t able to keep anything down and I could barely get out of bed. The doctors tried to convince me I was depressed and had fibromyalgia, but I knew in my gut that wasn’t right. We tried over 30 medications that did nothing but make it worse. My leadership said I was being dramatic, called me a liar, made fun of me, etc.
I was terrified I was dying. I started making a plan for my things if I didn’t wake up one morning and writing letters to friends and family members for my husband to pass on to them when I died. I alternated between a state of constant fear and exhaustion.
At my worst, I was found passed out in the bathroom and had to have an ambulance called but I was too dehydrated and malnourished for them to get an IV in. They called my husband and he followed us to the hospital where, once again, they found nothing wrong. I was told to go home and rest and put on quarters (sick leave) for three days. No one from my leadership checked on me. The only text I got was from my supervisor asking when I was going to be back at work and that is when my doctors finally realized I’d never have a chance to get better in that environment and I was switched to an office job. I still didn’t get healthy, but I had good leaders that cared, and I got better enough I could push through the work day and eat a little bit.
Flash forward to 2018 and we PCS’d back to the states. I did my research and found the best doctors in the area (some up to 3 or 4 hours away, but I was determined to get a proper diagnosis). In 2019 after countless tests and procedures and even a couple surgeries, they found Crohn’s disease, GERD, Gastroparesis, diverticulosis, SIBO, and a small hiatial hernia and then in 2020, I was diagnosed with lupus and ankylosing spondylitis.
While Crohn’s and AS are hard to deal with on their own, I’d like to focus on the Lupus. While every autoimmune disease is different and affects people differently, May is Lupus Awareness Month and (for me) Lupus is my most complicated and debilitating disease. Lupus is a very complex and hard-to-diagnose disease. There is no one test that can tell you if you have Lupus and it’s often a mix of process-of-elimination and symptoms that eventually lead to a diagnosis. It is essentially a disease where the body’s immune system is constantly attacking itself instead of protecting itself. Part of what makes Lupus so complicated is no two people are identical with their symptoms. It can attack any part(s) of the body and the smallest things can create or worsen your symptoms.
Myself and several others I know suffer from fatigue, brain fog, skin rash, severe GI issues, headaches and migraines, joint pain, dizziness, anemia, Reynaud’s Syndrome (the inability to properly regulate body temperature resulting in constantly cold hands and feet), mouth ulcers, hair thinning/loss, anxiety, depression, and severe sensitivity to light and heat. These symptoms fluctuate in severity but never go away. Sometimes I have days where I can run errands and enjoy a cup of coffee, other days I can barely get out of bed and struggle to even keep down water.
Traveling, stress, heat, a virus, even the smallest change in weather can cause any of these symptoms to flare up and every day is a guessing game as to how I’m going to feel. It’s like waking up and rolling a pair of dice that will decide how you’re going to feel that day and if you’re going to be able to accomplish anything. I’ve had to cut my hair off because it was thinning and I was losing my curls I’d loved for years.
To finally get accurate diagnoses was both a relief and terrifying. A relief because I finally knew what was wrong, but terrifying because I had never even heard of AS and while I’d heard of Lupus (and people on House never having it), I had no idea what it actually was or that it was such a huge factor in how horrible I was feeling. I did a ton of research and eventually I had to accept my illness was chronic and while I’ll have waves of feeling better and worse, I’ll never fully be healthy again.
I got medically retired from the military and said goodbye to my life-long dream. I’ve since started college and on my good days, I walk my dogs and am working on finding a new dream. I don’t know what I want to do, or what I’ll be capable of doing in the future, but I know I want to help people. I will help people, somehow. And while I’m figuring that out, I do my best to connect with other people struggling with similar chronic illnesses and encourage them in whatever their goals are and to bring awareness to this disease that affects roughly 1.5 million Americans and roughly 5 million people worldwide.
Thank God for my rock of a husband, who came to every doctor’s appointment he could, was there for every procedure and picked up way more than his fair share of housework over the past few years. He had my back 100% through years of illness and uncertainty, and trusted me when I said I knew something deeper was going on. Without him, I have no idea how I would have made it through all that. My illnesses have taken a lot away from me but they’ve also given me a lot, too. It’s shown me who my real friends are and taught me to take advantage of every opportunity that I can because you never know when or if you’ll be able to do that again.
It’s showed me how strong I can be not only in the face of adversity, but when my own body is working against me. It’s connected me with some incredible people who have inspired me and lifted me up during my darkest days. The chronic illness community is small and not very well understood by those who aren’t a part of it, but we are strong, resilient, and courageous. We’ve adopted two dogs and two cats who are my whole world and who keep me going when my husband isn’t around. They force me to be strong even when I don’t feel like I can be.
It never occurs to anyone they can wake up sick one day and never get better, until it happens to you. My life changed without my permission and without warning. But while that might knock me down intermittently, it’ll never keep me from getting back up.
If you’re blessed with good health then use it to your advantage. Take every chance you want to take and do everything you want to do. Push your body. Do not limit yourself. You never know when things will change. Most autoimmune diseases develop between the ages of 15 and 45 and if you find yourself facing this immeasurable challenge, my advice is to you is to not be afraid to ask for help. I tried to do everything by myself for so long that it almost killed me, and if you don’t ask for help you can be doing major, permanent damage to your body. There are a lot of amazing resources and Facebook groups that can help you know you’re not alone and help you navigate the emotional ups and downs of chronic illness. Life can change in an instant, but it doesn’t have to break you.”
This story was submitted to Love What Matters by Kara Woods from Abilene, TX. Follow her on Instagram here. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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