That alone could be the theme of her story – her symptoms, her diagnosis, her long journey to find answers, her desperate search for relief. But it’s not going to be. That’s because the bigger theme of Eve’s story has very little to do with her physical condition. It’s the outlook and impact she has despite it.

In 1996, Eve had a spinal cord fusion surgery. She was injured at work and had subsequent surgery to repair a ruptured disk. That would be the start of everything to come. 

Unbeknownst to Eve or her doctors, she had a rare medical condition called Arachnoiditis. The effects can be stopped or reversed if diagnosed and treated within the first year. Eve waited for 21 of them.

Her symptoms were debilitating and immediate. Headaches, severe shooting pain, tingling and numbness, the feeling of insects crawling on her skin, difficulty standing for long periods (if at all), muscle cramps and spasms, and more. 

By 2009, she was researching her symptoms and actively searching for an answer when she stumbled on arachnoiditis. 

“I took it to my doctor and said, ‘This is me. This is everything I’m experiencing.’ And they said arachnoiditis is extremely rare and not really around anymore because they stopped using oil-based dyes for contrast injections,” Eve explained. “It was frustrating because I knew in my gut that I was right.”

Eve asked if there was a way to check. Doctors did a CT myelogram, entering through the side port of her pain pump to inject the contrast to do the test. There was a cyst at the tip of her catheter from her pain pump, which had fentanyl in it at that time. When the doctor injected the contrast, the added pressure blew out the cyst and released the stored-up fentanyl. Eve started overdosing immediately.

They rushed her to the emergency room, and she survived it – barely – and was in horrible shape. She went into acute withdrawal, which took nearly two years to recover from. Because of that, she never saw the test report and completely forgot about it as she dealt with the fallout from the procedure and her own near-death. 

It might have remained that way had it not been for another wild chain of events. Her long-time doctor had their medical license revoked, and it was nearly impossible for Eve to access her 20-year-long medical history. All she had was one page from her pain management doctor that listed her diagnoses (which were incomplete) and confirmed that her pain pump had been refilled.

She had to re-establish everything, and through that process, she located a report from the CT myelogram that had led to her fentanyl overdose. 

“There was one line that said ‘signs of arachnoiditis,’” she told us. “And I just gasped and thought, ‘I knew it.’”

Eve immediately took the report to her new doctor, and they ordered a new MRI, which confirmed her diagnosis of arachnoiditis.

“It was good, actually, because most doctors or radiologists don’t know much about arachnoiditis,” Eve explained. “Even then, I was fortunate because my radiologist was able to identify it. It just happened to be 21 years later.”

There are a few different categories of arachnoiditis, and Eve is in the severe and catastrophic stage. The only catastrophic symptom she doesn’t have is her nerve roots haven’t calcified. “Thank God,” she said. “That’s like the final stage. My spinal cord is already in pretty bad shape because arachnoiditis creates scar tissue inside the spine. That’s not meant to happen in the spinal cord. It will have an inflammatory response, but with arachnoiditis, it doesn’t shut down when it’s supposed to. The scar tissue wreaks all the havoc.”

The other unfortunate outcome of a delayed diagnosis is that Eve underwent so many procedures and treatments that you would never do for a patient with arachnoiditis. She’s had 11 implants, including her pain pump and a spinal implant.

“There’s not any one thing that helps,” Eve told us. “It’s a combination of things, and I call it my toolbox. Not one thing fixes everything, but a combination of small things definitely helps.

“The pain is intractable, which means it never stops. It’s 24/7 pain. And that’s really why I got involved as an advocate for the disease because so many doctors don’t know how to treat it – and the stories I was hearing were terrible.”

And that leads us back to where we started this story. Eve has experienced decades of medical challenges and misdiagnoses, procedures that exasperated the problem, and doctors who could do very little to help her. That could be the full story, and it would be a compelling one. 

But for Eve, it’s about anyone else out there who might be experiencing something similar. It doesn’t matter that her experience could top any list of bad experiences. She is always, continually, thinking about others.

When we called Eve, it was like speaking with a leading medical professor. Her terminology, knowledge of her condition, and experience with the medical field were astounding. But she spent most of her time telling us about resources available to people like her and sharing stories of connections she’s made that have resonated the most. She wasn’t worried about herself. She was wondering who else could receive some help. 

That doesn’t mean Chive Charities wasn’t here to support her – quite the opposite. With the support of our donor family, we were able to fully fund the purchase of a tilt wheelchair and vehicle lift to give her some comfort, independence, and mobility. The total impact was $7,188.

After she got the wheelchair, she sent us a photo of her out and about:

“I live in Oregon now, which is so beautiful,” Eve said. “There are a lot of accessible trails, and I’m just looking forward to going out when I feel like it. I want to be able to do it myself, and the tilt chair and lift will help me do that.

“I deeply, from the bottom of my heart, appreciate everything you did,” she continued. “What’s important about what you do is that you help people connect with these resources and give them the ability to have the same freedom as a healthy person. That’s what I appreciate the most.”

Spoken like a true advocate. It can be easy to look at a person and see the challenges they face and think that must be the biggest part of their story. But looking at Eve, you’ll see it’s actually about how those experiences can help you connect with and support others. It’s the foundation upon which Chive Charities was built. Share your story, inspire others, make the world 10% happier.

For all those reading, donating, sharing, and applying, you’re part of our life-changing mission. We can’t wait to see who (and what) is still to come. DONATE HERE. 

P.S. If you’re interested in learning more about arachnoiditis, please visit the website https://www.acmcrn.org/. There, you’ll also find the Patient Registry, which offers insights into how the International Arachnoiditis Patient Registry is supported and how other rare disease communities are assisted.