My childhood was a blur of activity. I was, in every sense of the word a tomboy, which for that time period meant a rough and tumble girl. I’m from a small town in Kansas, and my grandparents lived on acreage there. My happiest moments were spent feeding chickens, gathering eggs, caring for horses, picking produce, and riding on a John Deere tractor. I also played hard with kids—running, skating, biking, and playing baseball. I was extremely thin, and my joints flexed with ease. In fact, I could bend in ways others could not. It was quite fun to entertain my friends.
I don’t remember when I began to feel so fatigued during the day. I guess it was a gradual thing, like sitting outside admiring a sunset, and then suddenly realizing the sky has become dark. It was easy to hide at first—a quick nap was all it took to be revived again. However, as time went on, there were days when I felt as if I would collapse at any moment. My heart also began to palpitate, but I never told anyone. I ignored it until I couldn’t. Tests confirmed a diagnosis of mitral valve prolapse with regurgitation. After my son was born and I could look down and see my feet, I was stunned that I’d developed bunions. An orthopedist said that my ligaments didn’t hold my bones when I was pregnant. At the age of 41, I broke my foot; at 43, an ankle; at 44, a finger. The orthopedist again said that my ligaments weren’t holding my bones.
During the past few years, I’ve often gone to a chiropractor for adjustments. Sometimes several ribs slip out of place when I sneeze. My jaw, hips, knees, wrists, and elbows also dislocate quite often. I wear a custom splint in my mouth at night to hold my jaw in place, and I wear compression sleeves on my elbows and knees during the day. This year, a rheumatologist diagnosed me with hypermobility spectrum disorder (HSD), but she said she’s certain that I have either Ehlers-Danlos syndrome or Marfan syndrome. My cardiologist suspects it’s Marfan’s. I’m now waiting for the results of a genetic test.
Having a connective tissue disorder hasn’t caused a disconnect with who I am though. I’m a wife, mom, and author, who also enjoys working part-time in education at a large art museum in Kansas City.