Thinking back: I am just shy of 18-years-old. My mom and I have exhausted the ER staff of all of our local hospitals if not every day, every other day, for the past two years. My hip and my back now ache with the same pull-and-stretch feeling…
Thinking back: I am 16 years old. I sit in a cold ER with my mom on a September day. My mom and I are regulars at all the local ERs because, for the past year, I’ve been struggling with a deep, nagging hip pain. It has made…
Some time ago I wrote a column talking about what it was like for a woman with cerebral palsy to seek birth control. I mentioned a few symptoms, like ankle pain and swelling of my breasts, and I expressed frustration at the lack of information I could find about…
Have you ever considered becoming a personal care attendant? These essential workers enable people with chronic illnesses to be as independent as possible by assisting with daily living tasks such as transportation, shopping and house chores. Not everyone is cut out for this important work, but if you…
On Friday, I wrote about how I finally accepted, positively, my physical therapy. I think I started the intensive physical therapy program two weeks ago today. On Friday, I talked about giving into the therapy program; today I want to gloat a little … About a month ago, I was…
The year is 2000, I am 5 years old. A therapist rolls me back and forth on a huge ball. My back stretches and pops. My legs ache, burn and throb with pain as she hoists my foot up onto her shoulder. “Do you feel a stretch?” She…
Every one who has a chronic illness likely has experienced days when they have not been able to get out of bed because of their pain or feeling sick. It may seem unimaginable, but it can be easy to become bored when you spend days in bed —…
Fortunately, personal care services are granted to those with physical disabilities. Waiver programs make these very important services affordable. I am blessed to have personal care services so I can live as independently as possible. In my experience of having personal care, I’ve seen good and bad attendants,…
I think the language we use when talking about our disability or chronic illness is very important, regardless of whether we are talking to our doctors or our friends. As people living with a chronic illness we can control, to an extent, how our lives are perceived. It is…
This month, following mountains and mountains of stress, I sat in the waiting room of the specialist I’ve seen for the past 21 years. Over the course of the month I had to medically withdraw from my senior year in college; my physical, mental, and emotional health was…