Updated: Oct 3, 2021
How I moved from Chronic Chaos to Creative Clarity
How it started...
I was 10 years old, obsessed with figure skating but not loving how my hips were hurting with each step I took. At first, the doctors said it was growing pains. 7 different doctors later, all before turning 11 years old, I finally got a diagnosis "guess" from a rheumatologist. Little did he know, his assumption
would change my life forever. Ehlers Danlos Syndrome (EDS): A rare auto immune disease that was not able to be traced by genetics- categorized by the hypermobility of joints and many other internal complications. The dots began connecting, of past childhood injuries and pain. And so it began, my life with an invisible illness.
Timeline: Post diagnosis but pre- college
I quit figure skating due to the risks of extreme impact and movement
Surgery number one (12 years old)- Right Hip surgery. It failed due to the surgeon not finding the tear and backing out. I woke up and realized the pain was not fixed. (And I wondered why I had trust issues) lol.
Surgery number two (13 years old)- Left Hip surgery. New doctor this time and it was a success.
Accidental overdose on pain medications and a trip to the ER to save my life
Surgery number three (15 years old)- Re-do on Right Hip. This time the new doctor found the tear that the first surgeon missed.
Second accidental overdose
Finished out high-school as a normal kid, focused on music and getting ready for college (Excuse the horrible grammar and spelling of these Facebook posts from my youth lol. I wanted to include these as it shows a progression of what happened)
Timeline: Post diagnosis and College
Moved away for college to major in music performance. Surgeries were behind me and I no longer through about my Ehlers Danlos Syndrome.
Walking around campus became very difficult. It never occurred to me that my chronic illness was acting up. I thought I was just tired
I began injuring my body. My feet, my wrists, shin splints... fatigue and headaches.
Eventually it became too much. I started online school to finish out my time and dropped out of the college I was in. Best decision of my life!
Started grinding in the corporate world moving up the change through different companies.
The burnout started getting to me and the stress caused my Ehlers Danlos to flare up again
The Hardest Turning Point
I was 21, working as a Digital Marketing Director for a media company- burnt out, exhausted, managing way to much on my plate , and stressed beyond belief. My chronic pain was at a debilitating level, making travel very difficult. I finally went to see a new doctor but not for EDS (remember, I had almost forgotten I was diagnosed with that). I went to see her for potential thyroid
issues and this began the invisible illness run-around. My thyroid was fine but it left me no explanation for what I was going through. She wasn't going to consider anything else wrong. You see, with Ehlers Danlos (and many other invisible illnesses) many doctors dismiss it or will not take you on as a patient. This leads to massive anxiety and questioning your reality. Is this in my head? Am I being dramatic? Am I a hypochondriac? I was depressed, in pain, and didn't see a way out. I cried the entire 2hr drive home from that doctor's appointment and actually got a speeding ticket as I was in hysterics. (Not my best moment). I called my mom and told her what had happened and she was the one that reminded me of my EDS diagnosis.
A Glimmer of Hope
That night, I sat down after meeting with the doctor that made me feel crazy, and I found a YouTube channel on EDS. I cried as I watched other people bend their joints and talk about the pain and issues that I had been going through. At that point, I knew I wasn't alone. I started advocating for my own health, changing and researching doctors that dismissed me until I found one that listened and heard me.
2 more years passed and my condition got worse each day it seemed. I had no energy, I was dislocating so many joints. I was bruising easy and I was anxious. My digestive system was in crisis mode and there was so much inflammation in my body.
This started the list of medications. Pain medication after pain medication, It was either not successful at managing the pain or, it made me sick. Finally I found one that worked (Narcan in a low dose). I was then diagnosed with POTS (postural orthostatic tachycardia syndrome). When your blood pressure, heart rate and brain don't communicate- causing you to pass out. Another medication was added to the list. Along with a prescription of anxiety medication.
The turning point
I was still in my corporate marketing job, actually on the way to a new city after I accepted a promotion. Mind you, I was already burnt out and now taking on 2 more markets for a total of 4 markets under me. I was unsure of my decision and everything in me was telling me "turn around" and do not do this. Car packed full and on the way to my new house, keys in hand.
Then... NO JOKE... a Snowy Owl flew over my car and landed on the side of the road as I passed. It was not an in-season time for this owl (my brother studies them for a living) and it was an odd time of day to see it out in the open. We made eye contact and time stood still. When I got to my new house, for some reason, I looked up the meaning of seeing a Snowy Owl and I learned that it represents wisdom, change, transformation, and following your dreams. At that point, I woke up and realized my path.
A few more years passed and I quit that damn marketing job. I had one more hip surgery (December of 2019) and started getting into spirituality and health. Little by little my pain improved. I got a business/spirituality coach and then began my coaching adventure. I was able to get off all of my medication, connect to what my purpose is on this earth, believe in my faith again, and find my passion. My relationships transformed, new opportunities and people came into my life, and little by little, life got clear and my creativity came back. I started doing music again, painting, coming up with new ideas. My joy for life came back.
Now, I am on a mission to help others do the same. Yes, I still struggle with my #chronicillness, there is no cure. However, by using each 4 pillars (#creativity, #clarity, #love- a lot of #selflove, and #spirituality) I am able to manage it in a way that works for me. There are hard days when I hurt still and I don't want to get out of bed. There are days I #dislocate something. But the thing that keeps me going is that snowy owl and my deep inner knowing that I have a #purpose and place on this life. That my Ehlers Danlos syndrome is something I have but is not something that defines me. I am a proud #EDS Warrior but I am also Katie- here to help others find their #identity through their illness and transform their life.
What's your chronic story? Comment below or send me an email to be featured on my social media channels!
ps. If you are looking for a custom plan and accountability to help you transition into a new creatively clear identity, not defined by your chronic condition, I offer individual and packaged coaching sessions. You're also welcome to join my growing Facebook community!