Katharina Buczek
“I’ve been running in circles with specialists who have blown me off or offered very little help– telling me that there is no cure and to just ‘stay strong.'”
Even more recently, Alicia was diagnosed with craniocervical instability. This condition causes her cervical spine to dislocate since the ligaments in her neck are hyper-mobile. Now, she is literally struggling to keep her head up.
“It causes intense pain, neurologic symptoms, and horrible muscle spasms that pull surrounding joints out of place. I can barely hold my own head up anymore,” Alicia said.
After a relentless search, Alicia and David came across the Spero Clinic. Located in Arkansas, the clinic is “a one of a kind facility that helps people with debilitating chronic pain and neurologic conditions such as EDS.”
At the clinic, Alicia would work with a team of specialists for eight hours each day. She is trying to get her life back, one daily task at a time.
“My goal is to regain basic functions such as walking, showering without horrible symptoms, being able to sleep more than a few hours each night, being able to ride in a car without extreme pain and vertigo, and sit upright for more than an hour,” she wrote.
Some other goals that Alicia has include holding conversations, lessening her pain levels overall, and lowering her reliance on pain medication.
And, her most notable hope is that she will be able to leave her sensory sensitivity in the past.
“Light, sound, and vibration sensitivity has taken over my life. I can’t be near any basic sounds such as people talking or dogs barking without suffering horrible symptoms,” Alicia said.
With all of Alicia’s symptoms, you might be wondering how she copes. Well, she resorts to taking hours-long baths each day. She lays in her hot bathtub since it feels like the only way to take her mind off the pain.
“I dream of a day where I could just go walk my dog for fun or give my husband a hug,” she wrote.
