Sunday, October 27, 2013

My life with CMS

Talking about my condition can be hard because it's incredibly personal. Having CMS affects every aspect of my life and can make many situations difficult, and I don't always like to share those details. However, I pushed aside my discomfort when one of Josh's colleagues at Linfield's Good Samaritan School of Nursing asked me to present to a group of second semester students who are studying chronic conditions.

I was asked to spend 90 minutes talking about what it is like to live with CMS and talk about my experiences interacting with the health care system, focusing on what these future nurses need to know to provide the best care. I was able to present however I wanted.

This was an exceptional opportunity because I have had my fair share of experiences with the healthcare system, both for prevention, testing and unfortunately, emergencies, and I really wanted to give these new nurses some insight into what it's like to be a patient in these situations.

Even though my presentation was informal, I was extremely nervous. Luckily, the students were gracious, curious and extremely polite and my nervousness quickly disappeared once I started talking.

What really amazed me was how genuinely interested they were. They asked thoughtful questions I could tell they really cared about me and my struggles with CMS.

Wednesday, October 9, 2013

One thing

Over the years I've had to learn to ask for help when I need it. I have no problem asking to take someone's arm to steady myself, or asked someone to come pick me up when I can't walk any more.

But one thing I can't ever do is get up the courage to do is ask a stranger for a seat on the bus.

First, I'm not sure what to say. But I think my biggest fear is that they will ignore me, or judge me doesn't look like I need to sit.

Of course it's more likely that they would say yes without thinking twice.

I really shouldn't care what other people think, but that's easier said than done. But sometimes it's really hard to have a disability that isn't obvious. Don't get me wrong - I am thankful my form of CMS is undetectable for the most part, but sometimes I think it would be easier if everyone just "knew."

I suppose the best way to get over my fear is to just ask. What do you think?