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.
Sunday, October 27, 2013
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?
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?
Monday, September 30, 2013
I'm back
After being silent for more than a year, I've decided to start contributing to this blog again. I am finding that as I get older and encounter new challenges associated with having CMS, I need to continue writing about it outside of my goal to walk a mile.
Until a few years ago I never thought that talking or writing about my CMS would be of interest to anyone. But now that I am in a new city encountering new people in new situations, I find that I'm having to explain my disability to a whole new group of people. And that has proven to be tricky at times.
When I encounter a situation where I need to explain my CMS, it's always a challenge to decide how much to share. Sometimes I want to talk about it, and other times I don't want to go into much detail so this blog is my way of providing the opportunity for others to learn as much as they want to on their own terms.
My goal for this blog is not only that it be therapeutic for me, but to also help others who might be living with a chronic disorder, as well as anyone who knows someone with a chronic disorder.
I plan to update this blog only as I need to. And I don't plan on promoting it on social media, so if you'd like to get regular updates please bookmark it or subscribe as a follower.
I hope you enjoy reading.
-Kelly
Until a few years ago I never thought that talking or writing about my CMS would be of interest to anyone. But now that I am in a new city encountering new people in new situations, I find that I'm having to explain my disability to a whole new group of people. And that has proven to be tricky at times.
When I encounter a situation where I need to explain my CMS, it's always a challenge to decide how much to share. Sometimes I want to talk about it, and other times I don't want to go into much detail so this blog is my way of providing the opportunity for others to learn as much as they want to on their own terms.
My goal for this blog is not only that it be therapeutic for me, but to also help others who might be living with a chronic disorder, as well as anyone who knows someone with a chronic disorder.
I plan to update this blog only as I need to. And I don't plan on promoting it on social media, so if you'd like to get regular updates please bookmark it or subscribe as a follower.
I hope you enjoy reading.
-Kelly
Monday, May 28, 2012
mission: accomplished
Well, I guess I'll come right out and say it. I walked a mile! The funny thing is, it sort of snuck up on me. I went on a walk/hike this weekend at the coast near my grandparents' house with Josh and our friends Nicole and Timothy and Nicole's brother Eric. We walked a bit on the beach, along a small stream and then up and around part of the Oregon Coast Trail. It was a really leisurely walk and a beautiful one too! I didn't even think about how far it was until Nicole said she was pretty sure we walked at least a mile. So I checked my phone, mapped our course and sure enough, I walked just over a mile!
I have to say, when I realized it, I cried! It has been two years since I started my challenge to walk a mile, and I wasn't really sure how long it would take me, or if I'd even make it. But now that I've reached my goal I am so proud of myself.
To tell you the truth, I think I need to give credit to the elimination diet I recently completed. I blogged about this a lot on my Kelly's Sustainable Life blog, but Josh and I started an elimination diet about six weeks ago with the goal of "getting healthy." I was suffering from pretty severe acid reflux, fatigue and acne, and was fed up with trying medication, so I decided I'd try the diet to see if any particular foods were the culprit. And while the diet was challenging, I was able to identify the foods that were causing my problems and either drastically cut back on eating them or cut them out completely.
Now that I know how great I can feel, I have no doubt that my diet was preventing me from meeting my goal. It makes perfect sense to me. I was "addicted" to eating a lot of grains, added sugar and dairy, which made me feel sluggish and sick even though they tasted fantastic. But now that I have largely cut those foods out of my diet, my body doesn't have to fight to digest them, and as a result I feel better.
I have an appointment with my nutritionist this week and I am beyond thrilled to share my accomplishment with her. I didn't say this in my original blog post about the diet, but she was pretty convinced that with the right diet, my CMS symptoms could disappear. I was skeptical (and still am for the most part) when she said that, but now that I have been eating better and exercising more, I completely see where she was coming from. Of course my CMS cannot be cured with food, but the healthier I am, the stronger I will be, and as result, I can walk further.
Meeting my goal doesn't mean my one mile challenge is over. It just means I need a new goal!
Ideas?
I have to say, when I realized it, I cried! It has been two years since I started my challenge to walk a mile, and I wasn't really sure how long it would take me, or if I'd even make it. But now that I've reached my goal I am so proud of myself.
 |
| On our "mission: accomplished" hike! |
Now that I know how great I can feel, I have no doubt that my diet was preventing me from meeting my goal. It makes perfect sense to me. I was "addicted" to eating a lot of grains, added sugar and dairy, which made me feel sluggish and sick even though they tasted fantastic. But now that I have largely cut those foods out of my diet, my body doesn't have to fight to digest them, and as a result I feel better.
I have an appointment with my nutritionist this week and I am beyond thrilled to share my accomplishment with her. I didn't say this in my original blog post about the diet, but she was pretty convinced that with the right diet, my CMS symptoms could disappear. I was skeptical (and still am for the most part) when she said that, but now that I have been eating better and exercising more, I completely see where she was coming from. Of course my CMS cannot be cured with food, but the healthier I am, the stronger I will be, and as result, I can walk further.
Meeting my goal doesn't mean my one mile challenge is over. It just means I need a new goal!
Ideas?
Tuesday, April 24, 2012
Green and Go
Hooray, summer is here! Well, sort of. I guess three days of sunny weather in a row is supposed to be enough before the rain starts again?
Anyway, this weekend Josh and I started a fun new tradition that will not only get us exploring our new city, but will also help me with my goal of walking a mile.
It's called "Green and Go," and it was started on Sunday when Josh and I were scheduled to volunteer at the Oregon Food Bank stocking the shelves. Apparently I got the date wrong so when we arrived, nobody was there. So there we were, sitting in NE Portland at 9 am on a Sunday, awake and ready to work.
So my clever husband got on his phone, picked a green spot on the map and suggested we visit that park. That park happened to be beautiful Kelley Point Park. And at that moment we decided we wanted to visit as many parks in the Portland metro area as possible by randomly pointing at them.
We had never heard of the park and just decided to explore it, and I am happy we did. It was absolutely beautiful and completely peaceful. If you've never heard of Kelley Point Park, it has a 1.1 mile paved path that runs along the point where the Willamette and Columbia rivers. You start off walking under the trees with views of beautiful Columbia River. Then, as you follow the path to the left you start to head inland where you will find groups of picnic tables, clearings that would be perfect for a game of bocce ball, and lots of birds for bird watching.
Our visit to Kelley Point Park was the perfect way to start the summer, and it reinvigorated my desire to keep working toward my goal of walking a mile. All of the rain this winter made it a challenge to get out and walk, so now that the summer is here and we have so many great places to visit, I really think this is the summer I'll meet my goal.
Anyway, this weekend Josh and I started a fun new tradition that will not only get us exploring our new city, but will also help me with my goal of walking a mile.
It's called "Green and Go," and it was started on Sunday when Josh and I were scheduled to volunteer at the Oregon Food Bank stocking the shelves. Apparently I got the date wrong so when we arrived, nobody was there. So there we were, sitting in NE Portland at 9 am on a Sunday, awake and ready to work.
So my clever husband got on his phone, picked a green spot on the map and suggested we visit that park. That park happened to be beautiful Kelley Point Park. And at that moment we decided we wanted to visit as many parks in the Portland metro area as possible by randomly pointing at them.
We had never heard of the park and just decided to explore it, and I am happy we did. It was absolutely beautiful and completely peaceful. If you've never heard of Kelley Point Park, it has a 1.1 mile paved path that runs along the point where the Willamette and Columbia rivers. You start off walking under the trees with views of beautiful Columbia River. Then, as you follow the path to the left you start to head inland where you will find groups of picnic tables, clearings that would be perfect for a game of bocce ball, and lots of birds for bird watching.
Our visit to Kelley Point Park was the perfect way to start the summer, and it reinvigorated my desire to keep working toward my goal of walking a mile. All of the rain this winter made it a challenge to get out and walk, so now that the summer is here and we have so many great places to visit, I really think this is the summer I'll meet my goal.
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