So I finished writing this, I think. Here you go:
The other night I was at a party, and as everyone was sitting around the campfire chatting the topic turned to pain and IVs somehow. I really don't think I had anything to do with this topic change, surprisingly. One of my friends commented on how much it hurts when an IV is pulled from your hand. I assured them that it's much more painful when the PICC line running from your elbow to your heart is pulled out. All 54cm of it.
Another friend of mine commented on how much her back hurt - and my first instinct was to throw her out of her chair for even mentioning back pain. The second instinct? Show her what real pain is. But I would have no idea how to inflict this much pain on someone. I'd have to call my old buddy Himmler.
My back pain is so bad that I can barely stand. Sitting for long periods of time hurts. So mostly, I lay around. This morning it hurt so much I couldn't get out of bed. I literally couldn't move. But did I say anything to put her in her place? No. Because I'd rather not talk about how much pain I am in. I'd rather not let anyone know how horribly things are going, and how it looks like I have to sit around in pain for months waiting for something to happen. Or, rather, waiting for nothing to happen. That's my fear. I will wait around for months in all sorts of pain, and then they still won't know what's wrong with me.
I don't know if I could talk about my pain when I'm with a group of friends. I'm afraid I would start to cry - and I'm not the kid who cries because things are hard. Yes, when I have the energy I will complain about it in my blog, but then I am done. I almost started to cry while talking to my therapist today - which is strange. I have seen the same therapist since April 2006 - and even when I was talking about how I was hurting myself I never cried. Talking about the nightmares never made me cry. Talking about my mother never made me cry (because Dr. Martin is the best...), but talking about waiting around in pain made me start to cry.
And then I came home and had a complete breakdown. I actually had the hospital where my dad works page him so I could talk to him. I pretty much refuse to talk to my mom because she makes my world spin in the wrong direction. I can't move forward when she's telling me what a horrible person I am.
I am frustrated.
I don't know if I can even explain my frustration, but I will try. I am strong. I can get through anything - that's who I am. And this pain is testing that and I don't know what to do. I am the person who goes on despite the pain or the inability to breathe. I am the one who dances despite CF - dances to fight CF, but now my dancing is gone and I don't know what to do about it. I want my dancing back. I want my life back. I want what little I had back.
I've been feeling so isolated. I used to talk to Mom because she's the person who has been there through whatever I have been through, so she pretty much understands, kind of. But now I can't talk to her because I make her worry and she yells at me and it's just bad. So I am talking to my dad, but no one knows what to do - how to help me.
I want some help - but I don't know who to ask, or what to ask them to do. I've got this sort of apathetic attitude towards everything. But tonight I unloaded the dishwasher and I showered. And I didn't die. But I am out of Kleenex boxes, which might send me into another nervous breakdown. I know I'm having an anxiety attack at the thought of having to go to the store.
Honestly, I want my dad to come stay with me. Unfortunately he has a job that he sort of really needs to go to. I feel like my dad is the one who gets me. I can tell him anything. He's a doctor and he can fix me. He's always helped fix me before - and now that we're pretty sure we know what is wrong, I'm so upset that the only thing I can do is sit and wait.
I'm not the "sit and wait" kind of person. When I get out of surgery I want to get up and walking as soon as possible, because that will get my lungs working again and I will be better as soon as possible. I call the doctor as soon as I think my lungs are going south so that I can get IVs and get back to my life. I make the doctors DO SOMETHING when something is wrong. I have the urge to call all my docs and just yell because no one can figure out a fast solution to this. I WANT MY LIFE BACK.
I refuse to accept that my life is going to become me giving in to the pain. I hate taking the pain killers - I hate feeling like a zombie. But I hate that there is nothing to FIX me. I'm thinking I'm so bad I may as well have the exploratory surgery. It can't be any worse than waiting around, can it?
Well and then there's this issue. Read it if you want... the comment I made is there. I made it in February of this year when I was just getting off the oxygen. It's a huge issue for me, and I don't know how to deal with it. I really just don't know what to do about it.
I guess there's nothing I CAN do about it. But I'm unbelievably thankful for the support I do have. I love my Chris and Kyra, my Sarah, my Rachel, my Darin (when I make him care about me and pay attention), and my dad. They are my people. And I'm glad I don't have just one person - I have people. And yes, that's a loose Grey's reference.
Lastly, I'd just like to say that I'm scared. I'm going to admit it. I'm not usually scared about anything because I know that I will do everything I can do get better, and I will get better. But I don't know now. And I'm so afraid that I won't get better. That I'm going to be stuck like this forever. And being stuck when you really want to be able to do things is possibly the worst feeling ever.
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