I went from being an athletic, energetic, productive member of society to overweight, weak and agoraphobic. The pain was intermittent at first, but the cramping in my limbs would take my breath away. I could see the hematomas rise like aliens under my skin - the pain was blood curdling.
The doctors poked and prodded and took enough blood to fill a minivan. They said things like, “Your metabolism changes as you get older. It's your hormones.” Then one day I passed out in the lobby of a local hotel where I had been staying while I was looking for a place to live. I was diagnosed with systemic Lupus. So began my search for experts: Dr. Alan Metzger remained my wonderful rheumatologist until he retired two years ago. I went to live in the home of a dear friend’s mother who travels most of the year. Dr. Martha Koo and her family have been an invaluable support to me. When I felt strong enough to try it on my own, I was confronted with the many difficulties that inhibit independence when living with chronic illness. “One Problem At a Time” became my mantra. I am happy to say that I have finally found a brilliant rheumatologist, Dr. Ben-Artzi, who specializes in Lupus at UCLA with his kind and thorough Team.
Finding my experts was all-consuming. Once I had them, it was time to get back to work. As a designer, having my craft space and workstations set up in an ergonomic, organized manner--and having everything within reach--was goal number one. Easy access to my computer and to a glue gun (which requires plugging into a power outlet) remained a thorn in my side: if I made it convenient, the extension cords were ugly; if I made it pretty, it was physically exhausting to crawl around the floor. And forget about the myriad of cables behind the TV and stereo that screamed for tidiness.
I took an extension cord and duct taped it to the top of an old non working tower fan and although it wasn't pretty, it got the job done. My father Donald Beldock, a brilliant business man, inventor, and the smartest man I know, was visiting me from NYC. He saw my barbaric looking contraption and asked about it. He immediately saw the value in the idea, not only for those of us with limited mobility, but for everyone in this fast paced society. We laughed about it being such an eye sore, and how the first thing I needed to do was start designing my dream power tower.
And so began the journey four years ago that took me out of my head, and sometimes even the pain, and into the world of creating something that could make life a little better, easier and safer.
Here are some of my tips on "How To Live Well with Chronic Pain and Special Needs"
Take good care,