It's one of those nights. I can't sleep - or maybe I don't want to sleep yet. Either way, I just have all these things rolling around in my head. I'm thinking of things I wanted - things I still want. I'm thinking of friends who I haven't talked to in a while. I'm thinking of the great friends I spent my evening with. I'm thinking of all the things I want to do for the CF Foundation, all the things I want to do for CF Clinic, all the things I want to do for the CF world.
I think I'll work backwards from that.
I want to help people with CF. When I was very young I wanted to be a Pediatric Pulmonologist - I wrote in my journal in middle school that I wanted to be a CF doctor because I know what it is like to live with CF and I would be able to help them physically and emotionally. I want to help CFers with the emotional side through the CF group. I want to start new CF groups all around the country. I want to structure our CF group a little differently.
I want to change my CF clinic. I want to be able to see my doctor. I want everyone to get the care and respect they deserve. I want doctors to understand why we are so grumpy when we are in the hospital. It's not really our favorite thing to miss two or more weeks of our lives by laying in a hospital bed. It's not really a great privilege to be woken by a doctor at 7am - or even worse, a phlebotomist at 5am. And then we're having problems breathing, sleeping, eating, and basically living. We're in pain and, at least for me, I don't want to take pain meds because my lungs are already bad - I don't want to lessen my ability to breathe. And that's why I'm short with you. That is why I groan when you come in the room. It's not because I don't have respect for you or your profession. It's because I had a shitty night and finally fell asleep less than two hours ago and you wake me up and want me to be perky and smile at you? Not going to happen. Come later in the day and I'll be nicer to you.
I'm excited about all the things I have planned for the Great Strides walk. I'm so excited by how many people are helping my knit items to sell. I'm excited by all the events Lauren and I are setting up. I keep thinking of new things to add and I just am excited.
The friends I spent my evening with are amazing. I'm going to mention that it is -12 degrees out with windchills of about -40 and my friends still came to my house for games night. I had so much fun talking and playing games with them. They are great.
I'm thinking about one friend in particular that I haven't talked to since New Years. I'm worried about her - and maybe we all are. I want her to know that we love her.
I'm thinking about phone calls I need to return and how I want to spend my weekends. I am thinking about people I haven't seen in a while and how much I want to see them.
And lastly, I'm thinking about things I wanted.
I wanted someone to hold my hand or put an arm around me when I'm feeling stressed because I have to try and get the UW to fax my medical records from the last 10 years - yeah, 10 (do you have ANY idea how long it would take to fax all that shit??? A very, very long time for some poor intern). I wanted someone to kiss my forehead and give me a hug when I am frustrated by the care I am getting at my CF center. I want someone who could encourage me to shop around for a new doctor without pissing off the current ones - which I have no idea how to do. The advice my mother has given me scares me and makes me want to cry. I'm just trying to make sure that I am getting the best care I need. Then I am going to try and make sure that every CF adult at this CF center is getting the care he or she needs.
I wanted someone to squeeze my hand to let me know it will be okay when I'm freaking out about how long I have before they put me on the transplant list. I wanted someone to make me laugh despite all this bullshit I am swimming through.
I wanted someone who can make me laugh no matter what. I wanted someone to stand next to me and remind me that I am doing everything I can - that I am doing well, that I am strong enough to go through all of this.
And the more and more I think about it, I realize that no one can fill that role for me. I am the one who has to reassure me because I am the only one going through this. I'm the only one fighting my fight the way I want to fight it and so I will be my own cheerleader.
But it would be nice to have someone tell me to stop typing and to go back to bed because everything will be okay.
And sometimes, I just can't get my brain to realize that everything will be okay.
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