July 31, 2016

Like many other people with Multiple Hereditary Exostoses, I struggle to manage my day to day pain. Forget about the surgeries for a minute…that’s a whole other post. Right now, I’m just referring to the bone growths pressing into nerves, muscles, and/or tendons, and t...

March 25, 2016

When I was growing up, there wasn't a whole lot of knowledge about the rare bone disorder I had. My parents tended to air on the side of caution; I'm pretty sure they would have wrapped me in bubble wrap and put me in one of those big bubbles to prevent any harm from b...

February 28, 2016

Living with a chronic pain disorder isn’t easy. The simplest of tasks can seem impossible and daunting on a particularly bad pain day, and energy is sparse. You spend so much of it focusing on holding your body in positions that don’t aggravate your sore spots. It’s ve...

February 4, 2016

 

I had surgery in November to remove tumors from my right wrist, my right hip, and the bottom of my left foot. I usually combine surgeries because it’s difficult to get appointments with my specialist. He’s a busy guy, and he deals with a lot of sarcoma patients. I alw...

October 26, 2015

 

 

I am a “rare genetic mutation” case of Multiple Hereditary Exostoses, meaning nobody else in my family has MHE. I just lucked out, I guess. Growing up in the country, in a rural area, I didn’t encounter anybody with my condition. Nobody understood what it was like to...

August 29, 2015

 

I remember my doctor telling me when I was a kid that once I reached adulthood, I wouldn’t need to have surgeries anymore because my MHE bone growths would stop growing. I don’t think my body got the memo, because my bone growths still grow. Perhaps not as quickly as...

August 3, 2015

 

 

In an interview, I was asked that question. Truthfully, it threw me through a loop, and days later…I still can’t get that question out of my mind.

 

If you were to ask me that when I was in my early teens, I would have said “nothing”, because I was trying to pretend I...

July 2, 2015

I find that with my MHE that I am constantly compromising with my body and myself. You can’t fix every ailment that comes with MHE with a surgery, it simply isn’t always possible.

A week ago, I went to see my specialist to discuss the more problematic parts on my body...

June 9, 2015

 

Being in pain constantly wears down your spirit and makes you susceptible to dark feelings of inadequacy. Even the most positive person can still succumb to those dark feelings; even the most positive person has a couple bad days where the chronic pain just drains the...