First, I feel like I need to explain the title of this blog. When I was about 13, I began to have some problems with my right knee. I had been kicking a soccer ball in the backyard with my dog one night, and my knee hurt for days afterward. My parents took me back and forth to the doctor over the next few months, as it wasn’t getting better. The pediatrician referred us to an orthopedic surgeon who commented that my joints were more flexible than usual. He said it wasn’t unusual for girls my age, and that I could expect to grow out of it in a few years. Over the next few years, I began to have pain in my other knee, and both my ankles.
Several years later, I went off to college and began to have pain in my hips and my back. There were days I struggled just to walk across campus to get to my classes. My parents took me back to the doctor who referred me to a rheumatologist. He checked me for a number of different joint conditions, none of which seemed to quite fit my symptoms. The one that came closest was Ehlers-Danlos syndrome, type three. He wouldn’t/couldn’t make a diagnosis because thinking at the time didn’t allow for positive diagnosis without a family history. No one else in my family has joint problems. I left there with a daily regimen of over the counter pain medications.
For the next several years, I was back and forth to the doctor with various joint ailments. I tried several treatments, from steroids to various pain pills to all sorts of physical therapy. Nothing made a significant difference. After much trial and error, I found that a mix of Vicodin, muscle relaxers, rest and ice was enough to manage the worst of my symptoms. Of course, the side effects of the pills prohibit me from taking them during the day, but it makes a big difference at night. I also saw a different rheumatologist who gave me a diagnosis of benign hypermobile joint syndrome, which also happens to be known as Ehlers-Danlos syndrome, type three.
So, in a nutshell, I live with chronic joint pain. I’ve got the joints of someone more than twice my age and I’ve got arthritis in my right knee and degenerative disc disease in my back. I have swelling and stiffness in my hands and wrists and near constant back pain. However, I am so fortunate. Most people with my condition are MUCH worse off than I am. Others face constant joint dislocations that have to be professionally reset. I’ve only dislocated on a few occasions, and I’ve always been able to manage it myself.
Despite all this, I live. In high school, I trained as a figure skater. In college, I climbed a few of the Adirondack High Peaks. Right after college, I packed up my life and moved to Maine, away from everything and everyone I knew. Four days after I moved, I met the man who would later become my husband. We fell quickly in love and were married 14 months after we met for the first time. When we struggled to get pregnant, we adopted our son through the Maine foster care system. I’ve worked for years with children with disabilities, and am currently enjoying a less-than-voluntary-but-highly-enjoyed stay at home mom gig. Several months ago, my family and I moved from Maine back to New York to be nearer to my extended family. Also, I’ve gone back to school to pursue my nursing degree.
So, that’s the brief overview of the life I’ll portray in Stretchy Mom Copes. It won’t always be pretty, but I’ll try really hard to make sure it’s funny!
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