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.

We talked about everything from the details of my diagnosis, to what my legs feel like when I am tired, how I tell people about my CMS to having kids (that's a topic for another blog post).

But what I really wanted them to understand is how important it is to listen to patients and help them understand their health situation, and give them the information and resources they need to be in charge of their own health.

I have seen many doctors over the course of my life, including at least three different neurologists. One of the unfortunate parts of having CMS is that it's rare - one in a million to be exact - so there is no cure. However, that has not stopped me from being able to manage my CMS in other ways.

I told the students that when I was growing up, nobody explained the role that diet, stress and exercise can have on a chronic condition. Instead, I grew up hoping that a miracle drug would be developed and cure me.

I've talked about this before on my sustainability blog, but in the past few years I've really taken charge of my health. Shortly after I graduated from Linfield, I developed acid reflux and saw many specialists to find a treatment/cure, but all they did was prescribe medication and perform expensive procedures to make sure I didn't have something serious like cancer. Not a single one of them talked to me about how stress management or diet could have an effect.

It wasn't until we moved to Portland and was referred to a nutritionist that things started to turn around. When I first met with Maria at Nature Cures Clinic, she spent an hour asking me about my health history and was immediately fascinated with my CMS, convinced that it had something to do with my reflux. After my first appointment she told me that with a specific diet, stress management and good exercise, that she was confident we could get rid of my reflux and increase my energy. 

Fast forward two years and I am as healthy as I have ever been. A change in diet has not only cured my reflux, but it has given me more energy and increased the distance I can walk. And now that I know I can control my CMS, I don't feel as anxious about physical activities.

What I want all medical professionals to know is that it's so important to help patients understand how many conditions that aren't curable can still be improved through diet, stress management and exercise. I know that my CMS will never be cured by diet and exercise, but now I know that I am in charge of my own health, which is far more empowering than accepting that I have limits.

All of this is to say that despite my struggles I am thankful for the life I have. Even though I don't like having CMS, I do like what it has taught me. It has taught me to be patient, kind, thoughtful, unassuming and grateful.

How about you? What have the challenges in your life taught you?