Feeling a little maudlin tonight. Could be just overtired and it’s after midnight. I know I’ll be facing the next couple of hours wide awake. I keep telling my brain to ”shut up” but it doesn’t listen. So feel free to skip.
I am missing Linda and Rachel so much tonight! I’m in desperate need of Linda’s calm reassurance that none of this is as bad as it seems, and Rachel’s steady faith and wicked sense of humor. Ken is great, don’t misunderstand, but he still doesn’t really get it. He’s still furious with the medical profession but I’m ready to just get over it and get done what I need to get done to try to get better. I am getting some help over on the Kidney Bean thread, but I honestly thought that there’d be other people with CKD stopping by. Misery loves company? Of course, most people who have it have had Stage 1, 2, or 3 and getting to Stage 4 was a much more gradual process, if they haven’t been lucky enough to stay at those first stages. The earlier stages are more likely to remain fairly steady. I wish I’d known at any of those stages. But I had no clue, then suddenly it was like, “Hello. I’m a nephrologist and you have Stage 4 kidney disease. Make an appointment for March and we’ll talk.” That’s not how it was, but it feels like it when I’m alone and worried.
So, I figured this is Rachel’s Waiting Room, and a pretty safe place to vent those worries. It’s not just the diet...that’s secondary. In fact, if I was more honest with myself I’d admit that it’s a convenient way to shift the focus from the fear to the challenge of something tangible....numbers and nutritional content and such. Remember when we celebrated neutrophils and blood cell counts and little victories like finally getting to eat? Those were tangibles that we could celebrate with Rachel, and that allowed us to put the ugliness of the real picture- cancer - on the back burner for a bit and not saying the word. With Linda (and I know you all weren’t there for this), it was her wet weights before dialysis and her dry weights afterward. It was the hand holding before her bypass and not her heart disease itself. I feel like a spoiled baby, but I want those two amazing women to talk to just one more time.
I love you all, and I don’t want you to feel ”secondary” because that is absolutely not the case. Maybe that’s why I came back to BYC....for you! I needed you. Selfish, huh? I’d been so sick for so many months and I was just tired of feeling sick. I was tired of putting on the happy front for everyone and I knew I didn’t have to do that here. I knew I was safe here. I knew there was a waiting room, and that I’d never wait in it by myself.
Yep. I’m definitely overtired.
I know exactly what I need to say and I’m muddying it all up with extra words, as usual. Maybe that’s it. Maybe it’s not complicated at all, but as simple as finally being back in a place where I’m not getting sympathy or reassuring pats on the arm. I can get a few hugs and prayers WHEN I need them, and then we just change the subject. Just like that. And I think that’s exactly what I need. “Yep, your sick. You have a scary disease. Guess how many eggs we got today?” Just like that!
I suppose it’s natural to be obsessed with the kidney disease right now. It’s new. I don’t know what to do yet. I haven’t learned my limits and strengths yet. So of course it will be at the front of my thoughts much of the time. But here it doesn’t HAVE to be, and as I grow more accustomed to the changes in me, my coping mechanisms will change too. And this Waiting Room that Rachel built is the perfect place for that change to happen. I wish I had Rachel’s and Linda’s courage. And I wish I could ask them my thousands of questions about faith and bravery and how to face a life-altering disease the way they did. Have you ever seen the likes of them?
Okay. I’m done. Outburst # last. I’m not making this a regular event, and I‘m not asking for anything except a place. It is what it is. Guess how many eggs we got today?
I am missing Linda and Rachel so much tonight! I’m in desperate need of Linda’s calm reassurance that none of this is as bad as it seems, and Rachel’s steady faith and wicked sense of humor. Ken is great, don’t misunderstand, but he still doesn’t really get it. He’s still furious with the medical profession but I’m ready to just get over it and get done what I need to get done to try to get better. I am getting some help over on the Kidney Bean thread, but I honestly thought that there’d be other people with CKD stopping by. Misery loves company? Of course, most people who have it have had Stage 1, 2, or 3 and getting to Stage 4 was a much more gradual process, if they haven’t been lucky enough to stay at those first stages. The earlier stages are more likely to remain fairly steady. I wish I’d known at any of those stages. But I had no clue, then suddenly it was like, “Hello. I’m a nephrologist and you have Stage 4 kidney disease. Make an appointment for March and we’ll talk.” That’s not how it was, but it feels like it when I’m alone and worried.
So, I figured this is Rachel’s Waiting Room, and a pretty safe place to vent those worries. It’s not just the diet...that’s secondary. In fact, if I was more honest with myself I’d admit that it’s a convenient way to shift the focus from the fear to the challenge of something tangible....numbers and nutritional content and such. Remember when we celebrated neutrophils and blood cell counts and little victories like finally getting to eat? Those were tangibles that we could celebrate with Rachel, and that allowed us to put the ugliness of the real picture- cancer - on the back burner for a bit and not saying the word. With Linda (and I know you all weren’t there for this), it was her wet weights before dialysis and her dry weights afterward. It was the hand holding before her bypass and not her heart disease itself. I feel like a spoiled baby, but I want those two amazing women to talk to just one more time.
I love you all, and I don’t want you to feel ”secondary” because that is absolutely not the case. Maybe that’s why I came back to BYC....for you! I needed you. Selfish, huh? I’d been so sick for so many months and I was just tired of feeling sick. I was tired of putting on the happy front for everyone and I knew I didn’t have to do that here. I knew I was safe here. I knew there was a waiting room, and that I’d never wait in it by myself.
Yep. I’m definitely overtired.
I know exactly what I need to say and I’m muddying it all up with extra words, as usual. Maybe that’s it. Maybe it’s not complicated at all, but as simple as finally being back in a place where I’m not getting sympathy or reassuring pats on the arm. I can get a few hugs and prayers WHEN I need them, and then we just change the subject. Just like that. And I think that’s exactly what I need. “Yep, your sick. You have a scary disease. Guess how many eggs we got today?” Just like that!I suppose it’s natural to be obsessed with the kidney disease right now. It’s new. I don’t know what to do yet. I haven’t learned my limits and strengths yet. So of course it will be at the front of my thoughts much of the time. But here it doesn’t HAVE to be, and as I grow more accustomed to the changes in me, my coping mechanisms will change too. And this Waiting Room that Rachel built is the perfect place for that change to happen. I wish I had Rachel’s and Linda’s courage. And I wish I could ask them my thousands of questions about faith and bravery and how to face a life-altering disease the way they did. Have you ever seen the likes of them?
Okay. I’m done. Outburst # last. I’m not making this a regular event, and I‘m not asking for anything except a place. It is what it is. Guess how many eggs we got today?
