Because some idiot posted this:
"Jesus christ. Nothing makes you happy, like ever. Suck it up woman. "
The walk did make me happy. I just came home and felt really crappy from all the things I had done today - way too early in the morning - and well, I don't know if you've seen any of the photos, but I AM smiling and HAVING A GOOD TIME. And just for that... my next post will be photos from today to prove I have the ability to smile.
I loved being with the people who love me. I loved walking with them and joking with them. They are great people. And any time I get to spend with Sarah Lynn is a good time. I'm going to build a boat, and take Darin and Sarah Lynn hostage and move them to a desert island. Because sometimes, they are the only people in the world I want to spend time with.
Sometimes, but not today. Today I got to spend time with little kids - and hold Josie and make her giggle. "Is Josie going to ride the bus" "Yes!" "Is Momma going to ride the bus?" "Momma's too big!" I LOVE children. And I know when I do more babysitting this summer it's going to help me.
I in no way have to defend myself, but I am choosing to because I can. Now, since this person decided not to identify him or herself, there are several ways I could take this. Since I get both CF and non-CF readers, I have a response for both.
To the non-CF readers - you have no idea what it's like to be in the hospital for two weeks - to completely stop your life because you are sick again, and then when you get out you're expected to go full speed ahead right away. At least I expect myself to go full speed ahead right away. First of all, I just spent 2 weeks in a hospital bed, so my muscles ain't quite up to what they should be. That's the first issue. The next issue is I am confused as to how to fill my time because the hospital is so structured and there I need all the extra time to sleep because the quality of sleep is so poor, and I rarely fall asleep before midnight. Here, I can fall asleep whenever I want to because my bed is heavenly, and I don't need as much sleep and I am overwhelmed with how to fill my days. And now that Great Strides is over - something I work on heavily from October to May, I have this empty space - and I have lots of empty space already, and I don't know what to do about it.
For the CFers, maybe your hospital stays are different. I'm sure they are. When I'm in the hospital everything is very organized and my time is committed to the minute. And I love that structure. For some reason I feel like I have control over my disease when I am there. I push around docs and correct nurses that need to be corrected, and while it can be stressful, I feel like I am in control. I don't have that at home. I have way too much free time and it's for reasons I don't have to explain to anyone. I made some personal choices about my health and school a few years ago, and I will never defend those choices because they have been the right ones for me. Do I ever miss school? You fucking bet. Do I want the stress that makes my health decline faster? No fucking way.
And this weekend - well the past couple weeks - have been pretty hard for me seeing most of my friends and classmates graduate. They graduated from the school I wanted to attend before I entered elementary school. Before kindergarten - even before I knew my Sarah Lynn - I knew that I wanted to go to Madison.
Tonight I lost it when I saw a photo of grads singing "Varsity," because I have been ignoring how much I really wanted to graduate from here - with a degree in anything. I'd do underwater basket weaving, despite my fear of water, to get that red diploma holder.
But at the same time, this school made it nearly impossible for me to succeed. This school is the reason I failed. I could have done it with my disease had I gotten a little support from the school. But to them, I was just a number. And they didn't care whether I graduated or not, so I was forced to drop out. And it wasn't for lack of trying. I had never tried harder at anything in my life than college. And I still have big issues that something I tried so hard at turned out so terribly wrong.
"Jesus christ. Nothing makes you happy, like ever. Suck it up woman. "
The walk did make me happy. I just came home and felt really crappy from all the things I had done today - way too early in the morning - and well, I don't know if you've seen any of the photos, but I AM smiling and HAVING A GOOD TIME. And just for that... my next post will be photos from today to prove I have the ability to smile.
I loved being with the people who love me. I loved walking with them and joking with them. They are great people. And any time I get to spend with Sarah Lynn is a good time. I'm going to build a boat, and take Darin and Sarah Lynn hostage and move them to a desert island. Because sometimes, they are the only people in the world I want to spend time with.
Sometimes, but not today. Today I got to spend time with little kids - and hold Josie and make her giggle. "Is Josie going to ride the bus" "Yes!" "Is Momma going to ride the bus?" "Momma's too big!" I LOVE children. And I know when I do more babysitting this summer it's going to help me.
I in no way have to defend myself, but I am choosing to because I can. Now, since this person decided not to identify him or herself, there are several ways I could take this. Since I get both CF and non-CF readers, I have a response for both.
To the non-CF readers - you have no idea what it's like to be in the hospital for two weeks - to completely stop your life because you are sick again, and then when you get out you're expected to go full speed ahead right away. At least I expect myself to go full speed ahead right away. First of all, I just spent 2 weeks in a hospital bed, so my muscles ain't quite up to what they should be. That's the first issue. The next issue is I am confused as to how to fill my time because the hospital is so structured and there I need all the extra time to sleep because the quality of sleep is so poor, and I rarely fall asleep before midnight. Here, I can fall asleep whenever I want to because my bed is heavenly, and I don't need as much sleep and I am overwhelmed with how to fill my days. And now that Great Strides is over - something I work on heavily from October to May, I have this empty space - and I have lots of empty space already, and I don't know what to do about it.
For the CFers, maybe your hospital stays are different. I'm sure they are. When I'm in the hospital everything is very organized and my time is committed to the minute. And I love that structure. For some reason I feel like I have control over my disease when I am there. I push around docs and correct nurses that need to be corrected, and while it can be stressful, I feel like I am in control. I don't have that at home. I have way too much free time and it's for reasons I don't have to explain to anyone. I made some personal choices about my health and school a few years ago, and I will never defend those choices because they have been the right ones for me. Do I ever miss school? You fucking bet. Do I want the stress that makes my health decline faster? No fucking way.
And this weekend - well the past couple weeks - have been pretty hard for me seeing most of my friends and classmates graduate. They graduated from the school I wanted to attend before I entered elementary school. Before kindergarten - even before I knew my Sarah Lynn - I knew that I wanted to go to Madison.
Tonight I lost it when I saw a photo of grads singing "Varsity," because I have been ignoring how much I really wanted to graduate from here - with a degree in anything. I'd do underwater basket weaving, despite my fear of water, to get that red diploma holder.
But at the same time, this school made it nearly impossible for me to succeed. This school is the reason I failed. I could have done it with my disease had I gotten a little support from the school. But to them, I was just a number. And they didn't care whether I graduated or not, so I was forced to drop out. And it wasn't for lack of trying. I had never tried harder at anything in my life than college. And I still have big issues that something I tried so hard at turned out so terribly wrong.