It's been 3 years today since I've had the thymectomy. And just a month more than that since I was diagnosed with Myasthenia Gravis. I can't believe it's been that long. Still feels like just yesterday.
3 years ago I couldn't smile, squint my eyes, see straight, feel my lips, swallow, or even talk at times. I was exhausted all the time. I would eat cereal and food would fall out of my mouth. That's when I started to think something was wrong. It wasn't until the inability to swallow, smile, or talk did I know for sure.
I thought for sure I was going to die in a hotel room by myself in Milwaukee, Wisconsin. Definitely not a place I wanted to spend my last days.
And now, 3 years later, I'm still here. Although MG is a chronic auto-immune neuromuscular disease, it's quite treatable. It is still a struggle every single day. I still have awful awful days. There are still days that I can't feel my lips, see straight, swallow, or make my arms function properly. I still have to take pills every 4 hours. But when I remember back to what I was like, when I look at pictures of the non-facial expression, I can't help but be amazed at how much better I am. For some reason I think that's why I burn the candle at both ends. I try and fit as much into life that I can, right now while I have it. What else are we here for?
Monday, June 22, 2009
Tuesday, June 16, 2009
Life Goes Easy on me... most of the time
I hung out with Tracey, one of my favorite people and who I consider one of my best friends, this weekend. I've known Trace since, oh, probably pre-school. She's been one of my best friends though probably since some time in high school. She's one of the ones where we don't see eachother often, but we can pick up like no time has passed. Those are the good ones.
Anyway... We were talking about marriage and kids and life and wondered how we got here. It seems like yesterday we were freshman in high school. And now, we're coming up on the 10 year reunion. How does this happen? We were talking about the crazy turns life takes and how we dealt with it. Trace has now been married for 5 years and they've been trying to have kids for the past 2. They just recently found out they couldn't have kids. After much thought and prayer they decided to adopt, BUT they're adopting embyros. This way she can carry the baby herself. It's not a guarentee though. The implant is happening in a few days. I'm excited, and nervous for them. We talked about the disappointment of not being able to have children. And I have to admit, I've had this thought about myself serveral times. First, for some reason I've just had this feeling that I won't be able to. I don't know why. And then second, I've been feeling more and more over the past few months that I'm running out of time. I talked about this with Alyssa when I visited NC. She assured me I have plenty of time, that maybe I know my future husband already, that I may just have to not wait 5 years to make it happen, or just not have the 4+ kids I wanted. I appreciate these thoughts, and I try not to get stuck on how I think it should happen. Trace is a perfect example of this, isn't she? Life throws curve balls. You gotta go with it.
And I can't wait to see what happens in Trace's situation... I have a feeling it's gonna be pretty amazing. She's good people. I wanna be like her when I grow up.
And I really shouldn't complain. Life does go easy on me most of the time. But sometimes I get emotional and can't help but cry, "When is it my turn?"
Anyway... We were talking about marriage and kids and life and wondered how we got here. It seems like yesterday we were freshman in high school. And now, we're coming up on the 10 year reunion. How does this happen? We were talking about the crazy turns life takes and how we dealt with it. Trace has now been married for 5 years and they've been trying to have kids for the past 2. They just recently found out they couldn't have kids. After much thought and prayer they decided to adopt, BUT they're adopting embyros. This way she can carry the baby herself. It's not a guarentee though. The implant is happening in a few days. I'm excited, and nervous for them. We talked about the disappointment of not being able to have children. And I have to admit, I've had this thought about myself serveral times. First, for some reason I've just had this feeling that I won't be able to. I don't know why. And then second, I've been feeling more and more over the past few months that I'm running out of time. I talked about this with Alyssa when I visited NC. She assured me I have plenty of time, that maybe I know my future husband already, that I may just have to not wait 5 years to make it happen, or just not have the 4+ kids I wanted. I appreciate these thoughts, and I try not to get stuck on how I think it should happen. Trace is a perfect example of this, isn't she? Life throws curve balls. You gotta go with it.
And I can't wait to see what happens in Trace's situation... I have a feeling it's gonna be pretty amazing. She's good people. I wanna be like her when I grow up.
And I really shouldn't complain. Life does go easy on me most of the time. But sometimes I get emotional and can't help but cry, "When is it my turn?"
Monday, June 8, 2009
Emotional Connection
How do you console someone who is super bummed about a musician dying, that they've never met... I understand music speaks to us all differently, and somehow there's this emotional connection with an artist even though we never meet them. We still feel like we know them for some reason. It's the whole John Lennon or Kurt Cobain thing too. But still, I don't know what to say. Or how to make it better. Sucks. I just sat there helpless. Not a good feeling.
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