In the Summer of 2005, I was 32 and enjoying life, living in a hippy town in the Pacific Northwest. I was newly single with three small kids. I attended African dance classes a couple of times a week, theater rehearsals on the other days and contact improv dance on the weekends. This kind of manic schedule distracted me from my recent, scary ovarian cyst operation, and the loss of a marriage. I was energetic and able-bodied, until a front handspring changed everything.

I had heard a snap, but at the time it didn’t feel like a break. I really didn’t want it to be anything serious, as my ex had just canceled my insurance. Determined to ignore the pain, I continued to stay busy and popped a couple of tylenol. Two nights later my daughter brushed by my arm. “Ow!” I screamed, slightly dramatically. “That hurt sweety, be careful.” She was offended; she barely touched me. It didn’t make sense. Why did my wrist feel broken? I went to the hospital for an x-ray, only to be told I was fine. Nothing was broken, and I just needed to “take it easy.”

“How could it not be broken?” I was convinced it was. Maybe they didn’t x-ray the right spot? I went home with no answers and more pain.

Weeks went by. Then as I was preparing for a role as a peacock in a local play, every movement of my arm hurt. I was convinced it was broken. After a visit with my general practitioner, I was diagnosed with RSD (Reflex Sympathetic Dystrophy). Constant, agonizing arm or leg pain that develops after an injury. Okay, I thought this made more sense. She said it was rare, and that it could not be cured but it could be treated. Wait, what? “Does this mean I will be in pain all day all the time?”

She pretended to study her clipboard: “With pain medication, you should be able to manage your symptoms.” At 33, I was just told that because of a handspring I would be in excruciating pain for the rest of my life, hooked on pain pills. Even though there was nothing physically wrong, my brain was receiving signals that there was. I had a diagnosis no one heard of and nothing was actually wrong with me?

I took the pills, tried wearing a cast and a sling as needed–but nothing truly helped. At least it stayed in my arm. I heard that sometimes, the pain could spread to other parts of your body. I didn’t know what I would do if I couldn’t dance. A friend who happened to be an E.R. doctor, was concerned about my opiod use for RSD. I explained that I couldn’t handle the pain, my wrist literally felt broken. He advised me to gather all my paperwork from the past five years and go to the University of Washington hospital ER. I was desperate, and had nothing to lose.

Two hours later, I finally had more answers. “Mrs. May, I am very surprised that you have been suffering with this for as long as you have. You have Kienbock’s Disease.” Great, another label. “Kienbock’s disease is also known as avascular necrosis of the lunate bone. A portion of your right lunate bone lost it’s blood supply when it fractured–which means that piece of your bone slowly died.” Basically, my lunate bone looked like Rice Crispies. This was an actual thing. It wasn’t a general diagnosis for unexplained pain. My wrist HAD been injured after that stupid handspring five years earlier.

Fortunately, UW is a teaching hospital and because my diagnosis was rare and unusual–and my dead bone was completely toast–the university covered the entire operation with charity care. After a few hours of surgery I ended up with a wrist fusion, a donor bone graft, and some denervation surgery in my elbow.

What if the specialists had listened to a poor, uninsured single mom who complained of excruciating wrist pain for 5 years? I went to everyone to try to get answers. I thought about the neurologists, holistic healers, and emergency room doctors who missed it, or just didn’t try their best. They didn’t dig deep enough–they didn’t consult with other professionals. I might have Googled the right words myself to find out that I had Kienbock’s. When I went to the E.R. with searing pain and told the doctors that I have fibromyalgia, RA, adrenal fatigue and CRPS, they understood that they are all symptoms stemming from a single, unfortunate injury. But when I tell them I have Kienbock’s because of that fall, they don’t know what I’m talking about. “I never heard of that.” That was the last response I got from a PA stitching up my finger after an unfortunate run in with a vegetable slicer. It is almost like it doesn’t exist because they haven’t heard of it.

I’ve had bouts of depression, and I have contemplated quitting my career to go on full disability. I gained a hefty fifty pounds. All of this because of neglect. After fifteen years, my CRPS symptoms have spread to my full body. Some days it feels as though everything hurts and I am in full panic attack mode. My mind races to try and feel okay. What was it like before? I know that I was happier, carefree, and lighter. I also took life for granted. I had no idea how good I had it. When I ask my husband if he wakes up without any pain at all, his answer makes me weep. Then I feel alone. But I’m not alone. I go online and see there are thousands of other sufferers who don’t have answers. Western medicine throws pills at us and sends us hefty medical bills. In reality, we aren’t getting any better. There is no cure for what I have been diagnosed with. I have to find my new normal. Once I think I’ve found it, another symptom flares up and I’m forced to re-evaluate my situation.

What I know for sure is that there are certain triggers that exacerbate my symptoms:

1. Stress
2. Weather changes
3. Not enough sleep
4. Too much sugar

There are other causes for my “flare ups,” but my top four are sure to send me into a downward spiral every time. It’s really important for me to stay positive. Negativity and self-loathing cause emotional stress, and ends up triggering a pain flare-up. Now that my CRPS is full body, I have to conserve energy, and plan out each day wisely. Gone are the days of impulsive road trips. When I go on a vacation, I have to remember a laundry list of pain survival essentials. I’ll be okay, however, and so will you. Humor gets me through the toughest parts. When I’m feeling desperate for connection and laughter I Google stupid YouTube videos and find that I am laughing by myself, but at least I’m laughing.