Is it a Livejournal entry without excessive italics? Stream of conscience
How do I write something that I've said before, but this time without sounding self-indulgent? Can one ever sound TOO self-indulgent when writing about the loss of your internal organs? How much time do I want to waste feeling angry, confused, bitter, or resentful - and can I stop myself from feeling those things regardless of how much precious time it wastes?
I'm 42 years old and I am dealing with kidney failure and it's coming so much closer, so much faster than I wanted. I'm at 20% kidney function. Before the crisis was the lupus - now it is the kidney failure. Not yet - not quite yet, but close enough to where my nephrologist sent me to Dialysis Education. Close enough to where I chose which type of dialysis I will have. Close enough that we are talking about getting me on the transplant list.
Which I qualify for now, because I quit smoking in July. Something I haven't mentioned on social media yet. Not really a fan of being quit smoking, actually. Still want a cigarette, every single damn day. But it's "I want a cigarette" in the same way I want beer and nachos on a hot summer day. It just sounds really nice, but I don't actually NEED it. Not sure if I'll stay quit smoking, either.
The urge to go "Quitting smoking won't save my kidneys, fuck it" and light up is strong. But the urge to not overload my heart (which is what kills most dialysis patients) also grows ever stronger. So for now, the staying-quit stalemate continues.
But the wait for a kidney will be 6-10 years, and while Cassie said she would donate, unfortunately with her history, it's not feasible. And I will not ask for anyone to give me a kidney, either. I'm not sure if I'd WANT anyone I know to give me a kidney. Just how much will I owe them if they literally give me a piece of their body? I owe enough people in my life, I am tired of owing people. No thanks.
So a cadaver it will be - if it will be. If I live that long. Honestly, I find a strange sense of symmetry with that. A life-long obsession with All Things Death, to be possibly saved by a random dead person. I like that idea.
And that....is the only thing I like about it.
Where am I now? Vacillating between an overwhelming urge to ignore it for however much longer I can, and the urge to dive into all of awful feelings that are screaming at my edges. And I know myself! I'm smarter than that - I know myself enough to know that I cannot run from these feelings. I cannot stop feeling alone, embarrassed, ashamed, helpless, and furious at all of this, and the more I try to ignore it, the more it will come out sideways. I can hold it together for only so long, and I am old enough and have lost control enough times in my life to know that the more I try to pretend I have it together, the more explosive and life-ruining the fallout will be when I crash and burn.
Jesse suggested therapy today. He said my behavior has changed in the last couple of weeks. I've been having nightmares.
He's not wrong.
Here's the thing - see, I wasted almost two years being insane with grief and mania when I was diagnosed in 2016. I lost far too much time, wasted too much time. I do not want to do that again. I also can't deny the feelings I have, and I need to give myself permission to feel them. I forget - I forget how to feel things without letting it rule me. I forget how to let people in about it.
And...who would I even let "in" on this? Anyone who says they understand without being here is going to incur my immediate wrath, but god I need to hear someone say they understand. When Jesse said - dared say - he understood - everything in me shut down so quickly it took my breath away.
But I can't NOT let people in on this, either. And as always, I wind up stuck between my knee jerk reactions of bitterness and resentment and the knowledge that I need to open up, be expansive, be willing.
Ironically, life has actually been INCREDIBLY good for the last few years. Very good. Wildly good. Honestly, the best my life has ever been. I am stable. Life is quiet. Peaceful. I finally have what I've wanted all along, for four fucking decades - a nice, quiet, boring little life.
Maybe that's what scares me so much about dialysis.
Maybe I'm most afraid that it will take that away and that I will die before I get it back.
I'm 42 years old and I am dealing with kidney failure and it's coming so much closer, so much faster than I wanted. I'm at 20% kidney function. Before the crisis was the lupus - now it is the kidney failure. Not yet - not quite yet, but close enough to where my nephrologist sent me to Dialysis Education. Close enough to where I chose which type of dialysis I will have. Close enough that we are talking about getting me on the transplant list.
Which I qualify for now, because I quit smoking in July. Something I haven't mentioned on social media yet. Not really a fan of being quit smoking, actually. Still want a cigarette, every single damn day. But it's "I want a cigarette" in the same way I want beer and nachos on a hot summer day. It just sounds really nice, but I don't actually NEED it. Not sure if I'll stay quit smoking, either.
The urge to go "Quitting smoking won't save my kidneys, fuck it" and light up is strong. But the urge to not overload my heart (which is what kills most dialysis patients) also grows ever stronger. So for now, the staying-quit stalemate continues.
But the wait for a kidney will be 6-10 years, and while Cassie said she would donate, unfortunately with her history, it's not feasible. And I will not ask for anyone to give me a kidney, either. I'm not sure if I'd WANT anyone I know to give me a kidney. Just how much will I owe them if they literally give me a piece of their body? I owe enough people in my life, I am tired of owing people. No thanks.
So a cadaver it will be - if it will be. If I live that long. Honestly, I find a strange sense of symmetry with that. A life-long obsession with All Things Death, to be possibly saved by a random dead person. I like that idea.
And that....is the only thing I like about it.
Where am I now? Vacillating between an overwhelming urge to ignore it for however much longer I can, and the urge to dive into all of awful feelings that are screaming at my edges. And I know myself! I'm smarter than that - I know myself enough to know that I cannot run from these feelings. I cannot stop feeling alone, embarrassed, ashamed, helpless, and furious at all of this, and the more I try to ignore it, the more it will come out sideways. I can hold it together for only so long, and I am old enough and have lost control enough times in my life to know that the more I try to pretend I have it together, the more explosive and life-ruining the fallout will be when I crash and burn.
Jesse suggested therapy today. He said my behavior has changed in the last couple of weeks. I've been having nightmares.
He's not wrong.
Here's the thing - see, I wasted almost two years being insane with grief and mania when I was diagnosed in 2016. I lost far too much time, wasted too much time. I do not want to do that again. I also can't deny the feelings I have, and I need to give myself permission to feel them. I forget - I forget how to feel things without letting it rule me. I forget how to let people in about it.
And...who would I even let "in" on this? Anyone who says they understand without being here is going to incur my immediate wrath, but god I need to hear someone say they understand. When Jesse said - dared say - he understood - everything in me shut down so quickly it took my breath away.
But I can't NOT let people in on this, either. And as always, I wind up stuck between my knee jerk reactions of bitterness and resentment and the knowledge that I need to open up, be expansive, be willing.
Ironically, life has actually been INCREDIBLY good for the last few years. Very good. Wildly good. Honestly, the best my life has ever been. I am stable. Life is quiet. Peaceful. I finally have what I've wanted all along, for four fucking decades - a nice, quiet, boring little life.
Maybe that's what scares me so much about dialysis.
Maybe I'm most afraid that it will take that away and that I will die before I get it back.