I have tried to write this note for many, many years always deleting it before posting. It's time that I share one of the most challenging times of my life and bring awareness to normalize and end the stigma of mental health.
Identifying A Support System
If there's anything I want you to take away from this post, it's to listen to your body, find a Doctor that truly cares like family, advocate for your health, and most importantly, identify a support system.
From the time when this first started in 2012, my parents and Bill were there supporting me and looking back, I honestly don't know how I could have gotten through this without them. The brokenness I felt watching Bill have to cater to me because I couldn't walk, his patience and understanding, his support and encouragement to get me through days when I didn't want to and had given up. He has been my strength when I am weak and I'm sure that's hard on him....after all, when this started, I was 20 and Bill was 21 and this wasn't something he had signed up for when he started dating me two years earlier. Watching him push me around in the wheelchair and watch people look at you, whisper to the person next to them, roll their eyes, and judge you was the most degrading and awful thing I've had to experience.
My confidence was gone, my behavior, my outgoingness, and my mental stability had changed so drastically. I try to stay positive and try to think about how worse I could have it, but there's days that remind you that you are different and people will look at you differently because of it. The psychological burden, the financial impact, the emotional pain, the embarrassment of episodes that happen is why I haven't been open about my issues. I barely knew what was wrong with me that it was hard to think about telling people about it. Having a support system to get me through the toughest, darkest days is how I am still here today.
Overlooking the Signs
June 2012 - It's like a nightmare, the memory of the first time I fell to the floor crying in agonizing pain and felt the worst pain imaginable in my right foot. I would get this excruciating pain in my foot almost daily and by 2013 I was in a wheelchair, barely able to put a shoe on. I would have episodes where I get stuck, unable to move, and it was almost impossible to hide it. I became frozen, unable to move in fear of pain the next step would bring. I would have to call Bill or my mom to talk to me to keep my mind off the pain as I tried to walk from point A to point B. Shaking, crying, panicking that I would hurt. I would beg to be normal again, to not have fear of the pain when I walked.
In 2013, I began to keep a log of everything in a 1" binder. Every specialist we talked to, number of steps a day, food I ate, tests I took and the results of those tests and their recommendations. Bill had bought me a Fitbit so that I could track the rate of which my steps decreased and I was averaging 150 steps a day...in slippers because that's all I could wear. Every day I would walk by totes filled with shoes I couldn't wear with hope that one day I could wear them again.
2014 was filled with MRIs, CT scans, Xrays, EMG/NCV tests, an arterial doppler, and more doctors and specialists with titles that I didn't even know existed. I saw some of the best doctors in Chicago, saw allergens and nutritionists, and upgraded that 1" binder to a 4" binder. While nothing was ever found, other than some potential nerve damage that they couldn't pinpoint, I started 1 hour therapy sessions 5 days a week for almost 2 years. Therapy helped me gain back some confidence and I didn't need my wheelchair every day, could wear tennis shoes, and even learned how to drive with my left foot.
Still, they never found an exact reason this was happening. Some said CRPS or MS, some said Morton's neuroma or even a food allergy, while some rudely stated that it was just in my head and I needed to "just get over it". <-- Actual quote.
Healing My Body & Shifting My Mindset
Through all of the exploratory tests and specialists I was prescribed various medication, experimenting with neurological and pain management medicines and administering cortisone shots. I could feel my body was sick from the medication, but I was desperate for a solution. I had a sheet in my 4" binder of all the medicine we tried and what I was on. Tramadol, Lyrica, Gabapentin, Diclofenac, etc. I began to rely on Tramadol to keep the 'pain' under control and Diclofenac as a muscle relaxer. I listened to my body and knew it was time to take a break from all the medicine and doctors while we were preparing to face the next step, the Mayo Clinic. I wanted to cleanse my mind, my body, and just stick with doing physical therapy from home. I decided to set a goal to hit 1000 steps and it took until 2016 to do that. I was offered an opportunity to work at a Fortune 100 company in Chicago, a job I had prayed for, worked so hard for, but would require me to walk 2 blocks from the train station to my building. Terrified, I embraced the challenge and for the first time in years I never had any issues. I could walk short distances with no problems and it seemed things were starting to look up... and I could finally take the wheelchair out of my car.
Unfortunately, by the end of 2017 I was back on medication to help calm the nerves and muscles in my foot. Hindsight, my anxiety was a key factor here...We had decided to move to a different state for a job and I had to move a month before Bill...I was all alone in a new state 8 hours from home. I started having episodes again and began carrying a cane. I was able to hide these episodes from colleagues and managed to keep it a secret from most. 2018 came and I broke down and started carrying my wheelchair with me again as a security factor, with hopes I would never have to use it. Some days, simple tasks like grocery shopping, walking the dogs, and walking more than 300 steps seemed impossible. Other days, I played softball, football, volleyball and would forget about the pain. I knew I needed to mentally block the pain so I learned techniques where when I am struggling, to sit down and take a break, to not think about it, clear my head, start to think about something else, and breathe. I would set a goal for myself, “Only 20 steps until the car. Ok go” or “Only 30 more minutes of this and I can sit down” or “Find 10 blue things around you". Allowing myself to focus on other things was the key, the real medicine to my anxiety.
Shifting my mindset helped me recognize all of the positive outcomes that resulted from this challenge. I learned that everyone has a different battle, this was mine. I didn't want sympathy, I didn't want special treatment. I wanted someone to listen and to help find a path forward. I realized I was not aware of struggles others in similar situations like mine were facing until I needed a wheelchair to get around. I decided to figuratively step-up and take this situation as an opportunity to make a small difference. I worked with a facility management team at a previous employer to make the workplace more ADA accessible, little wins, big differences. Plus, with all of the tests they ran over the years, we were able to discover some other unrelated medical issues that we were able to address before they were too serious.
A Brighter Tomorrow
I recently found a note I wrote to myself a few months before joining HCA Healthcare in 2017: "I've come to terms with having this be my life and have adjusted my lifestyle to accommodate being differently abled. While I don’t want to be treated differently or singled out, I am a proud to see companies accepting and advocating for equality, diversity and inclusion. While I won't stop fighting for answers, I'll wipe away my tears for today with hopes one day soon someone will figure me out, and maybe they'll work here at HCA too. Never give up and take one day at time. Keep faith, keep fighting;"
Little did I know that within a few months of writing that, I would find healing, peace, and more hope than ever because finally, for the first time in 7 years I had my life back. Words can’t even describe how excited I am to be on the right track. I found a Doctor here in Nashville at HCA who listened intently as I broke down crying in the exam room, hopeless and broken clutching my 4" binder. She reassured me, asked me questions, and came up with a plan to “fix me”. Within 6 months of that first visit I was able to go on business trips and travel without fear, walk without a cane, and walk over 10,000 steps a day. I now take the proper medication to manage my anxiety and do exercises and stretches to calm the plantar fasciitis. I do carry a collapsible cane in my car just in case, but I loaned the wheelchair to a friend a year ago! Progress! Who would have thought, after all these years the problem was so simple, the plantar fasciitis pain caused my brain to fear the pain, triggered anxiety, and shut down that part of my body disabling me from walking properly.
The mind is powerful, listen to your body, and know the sun will always rise and there will be a brighter tomorrow.
Keep Faith, Keep Fighting;
Karli