Fentanyl to CBD, Bravery, and Teal Hair: Lessons from an Ehlers-Danlos Syndrome Advocate
By: Danielle Schoen
Editor: Alisha Evelegh
Whether it be leaving the Mormon Church on the day of her baptism or moving to Western North Carolina years ago with just her dogs, 120 dollars, a few clothes, and attending her cousin’s wedding with her soon-to-be new love; Katie seems to subvert and challenge norms with ease, all the while following her own heart and intuition.
In fact, whenever Katie comes to our Asheville office to talk about the crystals she puts in our products, her captivating honesty and strength of self remain part of the conversation for hours after she’s left.
It’s truly hard not to be captivated by this bold and bright teal-haired beauty, especially when she also happens to be facing severe chronic pain with that same boldness each day.
And it was Katie’s bravery and self-assurance that allowed her to advocate for her own health. She was diagnosed with the connective tissue disorder Ehlers-Danlos Syndrome (EDS) three years ago, after nearly a decade of misdiagnoses and two decades of pain.
We’re excited to share her story.
Journey to Diagnosis
To this day, Katie can recall the first time she ever blacked out, “I was five years old. It was field day… I was sitting on the ground and raised my hand to ask a question and I just fell completely flat on my face forward and it was all black.”
Though her teachers brushed the incident off as dehydration or malnutrition, it wasn’t a one-time event. Katie experienced constant blackouts until finally receiving the diagnosis of dysautonomia at 16.
It was around this age that Katie began to question her health more deeply. When she and 7 other kids from her high school got spinal meningitis, Katie noticed that her recovery time was significantly longer than that of her peers.
“I realized at that point that something wasn’t quite right… I just wasn’t the same. That’s when I started having migraines and what they said was anxiety and panic attacks; I was noticing that my fingers and arms were going numb when I was driving.”
Katie believed the doctors’ diagnoses and followed traditional treatment for anxiety. Still, something wasn’t right.
Becoming Her Own Advocate
A few years later, Katie returned to the doctors. Despite enjoying her life as a dog groomer at the time, Katie had to take regular work breaks to throw up. While the doctors wanted to write off the event as simply being an unusual reaction to stress, Katie listened to her intuition and advocated for herself.
“Please do some more tests on me,” Katie urged.
Finally, at 23 years old, Katie’s doctors obliged her requests and did an MRI. Her intuition was right. The doctors found that “they had been ignoring about 3 or 4 diagnoses in the spine of my neck.” These diagnoses included cervical spondylosis, herniated discs, bulging discs, and arthritis of the cervical spine. These diagnoses were the direct result of Katie’s powerful ability to advocate for herself and trust her intuition in a time of need.
“That was the turning point, just becoming my own advocate. It took me a span of four to five years to build up the courage to go with my gut, but when I did that’s when they started finding everything that’s wrong with me, and that’s when I was able to start recovering from all those years of not taking care of my body properly.”
It took nearly two more years, a misdiagnosis of fibromyalgia, and visits to numerous medical specialists before Katie was finally diagnosed with EDS at the age of 25, three years ago.
While it was gratifying to know that her intuition was correct and to finally have a diagnosis, this was also a time of grief and acceptance.
“That’s a big part of the whole chronic illness thing; trying to adjust to who you are with the illness, not become your illness, and remember who you were but don’t hold on to that person… otherwise, it can weigh you down.”
Just before getting diagnosed with EDS, Katie survived a brutal dog mauling incident that caused her to experience her pain like never before.
Over the years of living with (undiagnosed) EDS, Katie’s body had become desensitized to the pain. After the physical trauma of the attack, her body went into a “full-blown pain crisis. Every inch of my body started to flare,” Katie shares.
The severity of her pain led to years of different medications, including steroid injections. Ultimately, her doctors placed her on the opiate Fentanyl for pain management.
Holistic Care and Goal Setting
Medications are just one part of Katie’s healthcare regime.
A turning point in her pain management routine she credits to the holistic approach inspired by her former doctor, Dr. Daniel Mackey, which included physical therapy, psychological counseling, nutritional counseling, and using your prescribed medications as recommended.
Even with physical therapy, Katie was told at 25 that she would be in a wheelchair. Instead of letting this diagnosis discourage her, Katie decided to do 9000 steps around the yard with her beloved dogs each day, in addition to physical therapy. Years later, Katie continues to move through the world without a wheelchair.
“If you just keep at it and keep chipping away at a goal, you’ll eventually get there. I never thought 6 years ago that I would be back doing anything that I am doing today. I’m here now so I can finally say it’s possible, you can do it, just keep trying, and don’t give up.”
Katie also does a strenuous hike to a local waterfall once a year to challenge herself, “The first year I did it, I did the easy route with my cane. And this past year I did the hard route without my cane.” These personal goals keep her spirit high and her intentions focused on her wellbeing. Plus, we think going from a wheelchair-bound diagnosis to waterfall hiking in a matter of years is pretty incredible.
Medications: From Fentanyl to CBD
As we spoke to Katie, she was in the process of weaning off the opiate Fentanyl, which she was prescribed for pain management following the dog attack. She credits Blue Ridge Hemp products for keeping her discomfort manageable during what can be an excruciating withdrawal period.
“The day I went and saw Blue Ridge Hemp was the first time that I had weaned down my Fentanyl, so I was really not feeling good. But Will (the founder of BRH) let me take home the Salve and all 5 of the Roll-Ons. I have been utilizing the Salve on my neck and my back where I used to get my steroid injections and I have been getting better results… having the Salve is like a dream.”
Katie also uses the CBD Infused Roll-On Essential Oil Blends throughout her day to manage different symptoms. She uses the CBD Infused Roll-On Essential Oil Blend Calm and Relax at night and before taking her medications in the morning.
She applies the Breathe Easy and Concentrate Roll-On, which is also CBD-infused and contains essential oils and other botanicals, after taking her medications, and then Katie alternates between using the Joint Care and Muscle Care Roll-Ons while applying the CBD-Infused Salve to manage pain during the day.
She has been honest about her process, weaning off Fentanyl and documented it amongst her beautiful crystal vibes on Instagram at @elevatedfibers where she is as honest online as she is telephonically and in-person, willing to share her truth and answer questions from the chronic pain community.
“It is more relief than my medications, honestly. The other day I went and only took two of the three of my daily doses of my medicine because I forgot… it came into my life right at the perfect time. Because when I’m done weaning off of fentanyl I want to continue weaning off of Gabapentin and I think with the CBD products that I’m going to be able to do it. They gave me hope.”
Asking for Help
Katie’s strength, which seems inherent to her being, is reinforced by the support she gets from her loved ones. Katie relies on her family, her fur babies, and her partner for help and support, and advocates for the importance of consensual caregiving in the lives of those dealing with chronic pain.
She notes that many people without chronic pain often look on the caregiving relationship between a person with chronic pain and their loved ones as being lazy or unhealthy.
However, when the caregiving is consensual, it can strengthen intimate bonds and be a lifesaving source of help for the person in need.
“If you see somebody helping someone else out, don’t judge them for it, praise them for it.”
Katie also advises others with chronic pain to feel grateful for the help that they receive, instead of feeling burdensome.
“Accept that help and accept that love. Somebody is putting their ego and their pride aside to help you. So accept that fully and openly because they’re giving you a piece of themselves.”
“From a small age I never saw my life going in one straight, linear path…. I just knew my life was going to take a different turn, I didn’t know exactly how, but growing up I just knew that something was a little bit different about the path I was on.”
Katie was right to never see herself as conventional. We at Blue Ridge Hemp are in awe of her unique strength and bravery as a businesswoman, as a self-advocate, and as an advocate for others experiencing chronic pain and invisible illness.
We also like to think that she infuses this powerful energy into the healing crystals that she sources for all of our Essential Oil Blend Roll-Ons, as well as the crystal jewelry she makes at Mountain Kat Crystals… It couldn’t hurt to have a little more boldness and teal hair in the world.