My leukemia's back.

[getaclue]

Did your doctor mention anything you should be doing now? You've mentioned diet, but did they offer you a printed diet sheet? Or an information sheet on avoiding certain things? A bit of a plan, on how he want's to proceed?

 

[getaclue]

BTW, that noose you fashioned awhile back, and hung on your door for a previous doctor, you may want to find it, and have it ready.

 

[getaclue]

Hey, I got 10 eggs today. I adjusted the height on my electric fence. No raccoons, and no opossums got in. Much less rat activity too.

 

[sourland]

Good morning Team Rachel.

@getaclue you and your support are what this thread is all about and what Rachel has given us.

@Blooie I'm sitting here trying to think of the proper words, but they are not coming. I think where you are right now is exactly where anyone would be. Pissed at the doctors, somewhat pissed at your body, frustrated, confused, scared and lots more. You are just normal - There's a reason we are here. There's a reason Rachel pulled all of us together. We are not alone.

 

[getaclue]

All I can say is, I tried. It may not have helped one bit, but I hope it did at least a little.

 

[Blooie]

I have to say that this guy seems really good. He apologized for taking so long to come into the room, but he was trying to read through my chart. He decided it would leave us sitting for another half an hour, so he‘d just ask us the 30 or so questions he had. My favorite part of the day was when he said, “Let’s not start hanging crepe. You’re sick, but it’s not a death sentence.” Ken appreciated him saying, ”This is a disease where I’m not in control, you are. If you cath the recommended 3 times a day, you get an emptier bladder and urine isnt pressurized back up into the tubes it just left. You’ll have to watch your meals”....and here he poked at Ken and said, “None of them will hurt you, either”. Ken’s been nagging at me for forgetting to cath sometimes for a couple of years now. I asked then about a dietitian but he had labs he wanted to get run with some additional and more precise things to test for, so he said we were going to hold off on the dietitian until we had a more exact idea where I was and if I was lacking in other areas, which as it turns out, I was.

Treatment plan?? Nope, not exactly. No more Celebrex or Advil. No more Protonix. As for diet, he just said specifically not to use salt in cooking or at the table, NO salt substitutes (the potassium in that is through the roof), no potatoes, no cooked greens, no canned vegetables, no prepared, processed foods, and limit dairy. And no more Pepsi!! He said that was as far as he’d go because he’s not trying to come with a full plan for a diet.

He was just hitting the basics to see if, during this month of doing this, my GFR inches back up a tick or two, or at least stays steady. If it does hold or even go up, that will determine how strict I have to be with the diet....how hard we have to hit to regain some kidney function. After it levels out and stabilizes, then we can modify to maintain. So I know basically what I can’t eat right now. What I’m searching for is a way to use what I can to feed both of us. Ken won't eat fish. He won’t eat seafood, except fried shrimp sometimes. He won‘t eat chicken or turkey. He won’t eat broccoli or Brussels Sprouts or Asparagus. There’s a world of veggies out there that I love, but if it isn’t peas, corn, green beans, beets, or carrots he’s not interested. I usually eat the foods he doesn’t like when he’s gone for a few days or for the evening at meetings. It’s worked well for 52 years....now suddenly it won’t work anymore. That alone sure puts the brakes to a lot. But he did say that if it’s what I need, it’s what we eat.

I’m feeling better this morning and I’m sorry for the pity party last night. But sometimes when the night closes in and the clocks are tick-tocking in the dark, Ken’s snoring in the back bedroom, and Feefer is sighing in her sleep it all feels like I’m smothering. But I’m good now!

GAC, thanks for sitting up with me last night and holding my hand. You made perfect sense in the whirlwind of emotions that were threatening to spin out of control. And after you posted, I slept.

 

[getaclue]

Blooie, ANYTIME. I've got you on my prayer list, too. Fresh carrots, corn, cauliflower can replace some of it, and you can puree cauliflower like mashed potatoes.

 

[ronott1]

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 hope you are feeling better today!

Here is a quote:

Things always look better in the morning
Our willpower gets depleted over the course of the day. While food (specifically glucose) helps ensure we refuel on our willpower reserves, a good night’s sleep is the best way to recover from willpower depletion. So, if you’re either having a bad day or are just feeling exhausted after a day involving multiple decisions, go to bed.
Things seem to go from bad to worse by the evening as you get completely drained of your willpower resources and our natural instinct is to keep working at our to-do lists. Don’t. Sleep.
Things always look better in the morning. And, besides, those tasks that will take you 3 hours at night will probably be done within 30 minutes in the morning.
Pay attention to your willpower reserves. If there isn’t enough fuel in the tank, it isn’t possible to drive… let alone drive well and have some fun along the way.

 

[bruceha2000]

Maybe that’s why I came back to BYC....for you! I needed you. Selfish, huh?

Not at all!!! And WE need BLOOIE!!!! You really can't know just how much we all missed having you here. But of course you wouldn't flatter yourself even thinking that. But I can say it 'cause it's true!

I wish I had Rachel’s and Linda’s courage.

You do! I can't even imagine working through all the stuff I know you've worked through in your life (and all the things you haven't shared because I'm sure there is a lot more). You CAN do this, you DO have the strength. And yes, we ARE here to assist if we can.

Others need shock collars, so their patients can zap them, forcing them to spend time providing some much needed information.

Right up Blooie's alley!

All I can say is, I tried. It may not have helped one bit, but I hope it did at least a little.

You were on a roll! And unlike some (many??) of us, you've gone through it and can truly understand how Blooie feels. I think you had MANY good posts last night (OK, EARLY this morning).

There’s a world of veggies out there that I love, but if it isn’t peas, corn, green beans, beets, or carrots he’s not interested.

Well, you know, he's a lot less busy than he was a year ago. He can make is own peas, corn, green beans, beets and carrots while you make whatever it is you are having that day. Who knows, he MIGHT try a bit of this or that and decide he likes it (thus removing some of those "cook for thyself" efforts).

 

[Blooie]

Bruce, you are so good for my already inflated ego!!!

And I don’t use a shock collar......hanging them in effigy seems to be much more subtle but just as effective!