April, 2014 - Living With HIBM

Baby Steps

April 26, 2014November 19, 2017

Those of you who have read my posts from the very beginning know that I was not always as open and honest and raw about my disease before I started blogging almost 3 years ago. In fact, for the first few years after my diagnosis, I couldn’t even say the word “disease.” I mean, I literally referred to it as “the thing” and then later on as my “condition” and eventually, my “disease.” But even though I could finally call it what it was, which was definitely a step towards acceptance, that didn’t necessarily translate into being ready to fully embrace it or move on to actually sharing it with others or speaking publicly about it. And I most definitely wasn’t open to meeting anyone else with the disease or even reading or hearing about other peoples’ symptoms. I have always allowed myself to go at my own pace when it comes to coping with HIBM. I have always owned up to the fact that for me, seeing other patients farther along the path of progression in a more disabled state only serves to increase my anxiety and interfere with my ongoing efforts to stay in the moment-every moment that passes- and not fast forward to what may come to pass.

Read more “Baby Steps” →

An Open Letter to Equinox

April 4, 2014November 19, 2017

Dear Equinox Westwood:

I knew I was fooling myself when I first took a tour of your gym 1.5 years ago and thought that it would be a good idea for me to join- you know, given the 2 flights of stairs just to get to the front desk and then another 2 flights of stairs to get to the locker room. But I just couldn’t resist- the incredibly convenient location across the street from my office (and a mile from my home), the almost-never crowded pool where I could start doing the long put-off aquatic physical therapy exercises and of course, the unlimited access to Kiehl’s bath products. I told myself I would build the stairs into my exercise routine and that even though there was no elevator from the pool to the locker room, I would manage. I wanted it so badly. I wanted to enjoy all of the benefits that other people do from belonging to a fancy gym. I didn’t want to listen to the whispering voice in my head reminding me that I actually live in a different body from all those other people. I didn’t want to miss out on yet another thing because of my disease. And so I joined.