Is it kidney related or am I just getting stupid??

[MooseMom]

Thanks moosenom.
Your message made me feel better.  In some sick way it helps to know I am not the only person here who is/has been floundering thru this.

From reading some threads on here it seems like u all are adapting to this crap lifestyle so seamlessly. Maybe a lot are, idk. I do think people prpb try to be encouraging and positive when replying to someone who is struggling but sometimes it just comes off too damn positive and just makes me feel worse.  Like I can’t even do kidney failure right....!

So. Thank you for your honesty.  I do think writing here does help some.  I also feel like I need to reassure the healthy people who care about me and know about my kidney disease that I’m ok.  which is sick and twisted and true.  Why do these people bother asking how i am when they already know that I AM NOT OKAY.

No one adapts to this lifestyle seamlessly.  And yes, people DO try to be encouraging and positive because they don't know what else to say.  But your fellow renal patients DO find a way to cope, and they are trying to reassure you.  In saying that, though, I don't recall anyone saying it's easy.

Feeling like you have to reassure the healthy people is part of the toll that comes with talking to people who really don't know what you are going through.  It can be a real burden. 

Its interesting tho, instead of being all sad and scared lately my current mood state is pure rage. Which is apparently not an emotion that anyone ever talks about.   

All you have to do is skim the first 4 or 5 years of my posts, and you'll find me talking plenty about rage.  I was very angry (and still am), and I'll happily admit it because I think it is normal.  My rage was productive because it spurred me into action once I was sick enough to start the transplant listing process.  I never let up.  I made damn sure that everyone did what they were supposed to do. 

The first time I saw my neph and was sent home with a shedload of pills, I got so angry while filling my spanking brand new meds box that I threw it, filled with pills, as hard as I could against the living room wall.  If I say so myself,  I have quite the good fastball, so you can imagine the mess.  My husband calmly corralled and picked up my pills, and that made me even angrier because he had no clue what each pill was for!  And the first time he ate a banana in front of me, I was livid.  I felt like he had betrayed me! 

Oooh, just writing about this is making me angry; I remember all too well the all-consuming rage that I felt. 

That reminds me...reading was another coping mechanism that worked well for me.  There comes a time where the rage and sadness becomes exhausting, and I think our brains finally declare, "Enough already".  A sort of emotional numbness infuses your soul, and that's a good time to show yourself some mercy and try to think about something else, and a good story can be just the ticket.

Paul's suggestions about how to make eating out easier is spot on.  My husband was diagnosed with type 2 diabetes 2 years ago, and I give him all the credit in the world because he has changed his diet completely and has lost a substantial amount of weight.  We have certain restaurants in town that we've come to like because they know he is T2D (he tells EVERYONE!), and they know to prepare his meals without bread or rice.  As Paul pointed out, so many people these days have so many dietary restrictions, so asking for something to be left off your plate is ever so easy.  No one blinks an eye, anymore.

Good night!

[Naynay99]

Hey. Just wanted to thank Paul for all the links to recipes and ideas for going out to eat.  I’m sure I will get used to it and find some way to make the diet work for me.  It’s iust hard and demoralizing at times.   But I appreciate all the help. 

Feeling a little bit less crazy today, so maybe I will be okay afterall.  Idk.
Anyway I’m not giving up yet.  So thanks everyone for listening to my rantings.  I am still here so there’s that to be grateful for I suppose.

Anyway I hope u all have a great weekend.  Take care all. Keep on kicking asss and taking names- ur strength and resiliance in dealing with this crap hand is inspiring.  Take it easy. 

[kickingandscreaming]

Do you have the option to do PD rather than Hemo?  I have been on PD for over 2 years now and I have effectively NO FOOD RESTRICTIONS.  And no fluid restrictions.  Why suffer deprivation on Hemo when you can suffer a lot less on PD?

[lulu836]

Two things; PD / HD

PD:  I was too old to be messing with tests, equipment, storage, internal pain (described here as "drain pain"), external pain etc. when my kidneys gave up.  No, I am not trolling for an argument.....if you have PD and like PD as opposed to HD then good it just was never for me.  I would not be able to store a month's worth of solution in my house let alone haul a big bag of used solution to the clinic every month for testing.  Not "sour grapes" at all, just not for me.

HD:  I had multiple surgeries on multiple aparts of my body in a futile attempt to get a fistula. Never happened.  Or a graft; never happened.  So, I have a catheter.  I have adapted quite well.  The diet and fluid restrictions helped me lose a LOT of FAT.  I can now look at a menu in a restaurant and choose an acceptable meal without even thinking about it twice.  Fluids are not a problem either.  There are recipes and books on the net with really awesome home meals.  If I take my binders and eat my favorite foods within reason there is just not a problem.  All this is to say that I do not view HD as horrible or depressing or hated. None of that stuff.  It is a challenge that I have accepted and it is just not a big deal.  It is, however, a life saver.

[kristina]

It is, however, a life saver.

Well said Lulu, it all comes down to this one point : dialysis is a life saver and that is what it is really all about...
... and ... if we take the chance and create it as easy as is possible for our body (diet & liquid-restriction) and soul (hobbies etc), the better and more bearable it becomes  ...
Thanks again for putting it so straight and best wishes from Kristina.

[Marilee]

Hi Naynay,
I was thinking 'boutcha and came up with an idea - sort of a 2-birds-with-one-stone idea.
The changes in food are a problem and so is communicating with loved ones about this kidney situation, and you often don't have enough energy or enthusiasm to do a bunch of cooking...
So, maybe it's worth exploring the idea of getting together once a month with your mom - and once a month with your friend (stagger them so that you're getting together with one of them every two weeks or so) - for COOKING.
It would be a time at your place to focus on the foods, get some meals or parts of meals made and frozen, and while they're helping with the cooking, y'all can chat. It might start with what food changes you're working on, where the recipe came from, stuff like that.
This way, you get the help you need, they get to be useful (we loved ones really appreciate that) and it might turn into something y'all enjoy.
For example, maybe your mom likes to bake - she can help you mix up a few batches of muffins. Maybe it's casseroles that you build and divvy into single servings. Maybe it's soups.
I really love cooking and chatting with friends and family: Somebody's chopping, somebody's mixing, somebody's reading the recipe. Everybody has a cup of tea, there's a lot of chatter and laughter. Clean-up goes quickly.
I think this could help in a lot of ways.

Ok, that's all I got. .

[Naynay99]

Marilee-
Thanks for the idea.
My mom actually lives 12 hrs away so unfortunately I only get to see her a few times a year. 
But I like the idea of cooking s my friend instead of going out to eat. 
Thank you for the suggestion.

[Naynay99]

Hey- sorry it’s just me.  You all have given some great suggestions to try. 
I went on a road trip with,y best friend this weekend and never realized how much eating is part of going on adventures.   I managed to find a few things to eat that are on my diet, and tried to limit the portions bc they tasted salty.  Rest stops we’re trickier, I found an iced tea and some crackers was all I could find. 

We actually planned a photo stop at this weird restaurant with windmills and pigs all over it bc it looked cool.   My friend said we should eat theee and asked the hostess for a menu so I could see if there was anything I could eat while she went to the bathroom.  When she came back I looked at her and busted out laughing, saying all I could have was a side of coleslaw or a side salad.  It was a bbq place covered in pigs so what did we expect.   Even their entree salads were topped with pulled pork and bacon and stuff.   I got a side salad and even it came to the table covered in shredded cheese which I ceremoniously picked out.  I ate one of friends fried pickle chips and had half a side salad sans tomato and cheese, but I survived.   

[Marilee]

I'm SO GLAD it made you laugh, Naynay, and more glad that you worked something out.
I feel like my hubby dodged a bullet or something: My hubby didn't have any "pre-dialysis" food restrictions other than "watch the salt". It wasn't until about 6 months into PD that we had to start throttling back on phosphorus and keep protein levels up. I've read that this is not the case with everyone, though, and it sounds like your case.
May I ask, what are your current restrictions/limits?

[Naynay99]

Hey Marilee-
My nephrologist and dietician are trying to buy me some time with my kidney by following a strict pre-D renal diet, to limit certain things and also to drop some extra pounds.   It is a put off dialysis as long as possible last ditch effort.
The main things are to watch my phosphorus, potassium, protein (6 oz per day),and salt/sodium intake.  So I am to limit/avoid any medium or high Potassium fruits and veg, limit/avoid dairy, cheese, or other high Phosphoris foods, no red meat, replace animal protein meals w plant protein 3 x per week, no nuts, no chocolate, no alcohol, etc. 

The transplant dietician said I didn’t need to be quite so strict on the K, but I am following what my dr dietician told me.  My most recent bloodwork my K and P levels were good, but my creatinine went up again even with limiting protein which was a bit demoralizing.  It sort of has made me afraid to eat anything as it feels like everything is bad for me now.   I don’t want to mess up and make things worse.  I see invisible poison symbols  everywhere, like on potatoes and yogurt and cheese.

I have lost some weight which is nice to see,  esp bc my diet doesn’t seem all that healthy as a lot of the things I was taught are good for you to eat in a balanced diet are bad for my kidney, which is confusing. 
The lady at the restaurant handed me a binder that she said had nutrition info and gluten free options, etc.  which made me laugh bc I can eat alll the gluten that I want,   Lol.  Ah welll I suppose I will just have to really try to plan meals and eat home as much as possible.   
Takeout food is tricky.  My dr joked that I can get anythingto eat  I wanted from McD, then throw it all out and eat the cardboard box it came in!   So  when I’m not busy crying at the unfairness of jt all I am gonna try hard to continue to find the sick humor in the fact that water or coleslaw side or parsley garnish may be the only things I can eat at certain restaurants....  or else just order the berry cobbler for dinner!
Have a good nite. Thanks for all your support. 

[Marilee]

I'm so glad your bloodwork numbers are good  I hope the diet strategy works and gives you lots more time before dialysis.
Gosh, that's a lot to keep track of. I remember a 6-oz-per-day weight loss plan I did some years ago, and it pretty much meant that I mostly ate soups and salads because a 2-ounce meat patty was just too sad-looking on the plate. I was also cutting way back on starches then, too (something like 1,000 calories per day). Nowadays, I'd include pasta and rice dishes - anything to spread the meat around.

[lulu836]

How is the diet enumerated above better than dialysis?  You have more restrictions than even I do.  The only thing you are dodging is dialysis 3 times a week.

[Charlie B53]

What?  NO Cheese?  while I don't fix Mc & Cheese very often any more, nor do I have Ritz and Cheese but maybe once every month, or two.  I do pick the tomato's out of my salads but I draw the line at picking out the cheese, it stays!

And as for only 2 oz of meat?  That ain't gonna happen wither.

My labs have been pretty good, well enough that I even reduced my Renvela to only two or three at a time.  Then the last two months labs started showing a rise in my phosphorus, so it's back to taking 4 with every meal.

Cream Cheese on toast with peanut butter.  Yummmmmm

Wheat Bagel with Cream Cheese and Turkey, or Rare Roast Beef.    Couple of times each week.

I cannot imagine keeping our protein levels up with only 2 oz meat at a time, unless I was eating 7 or 8 times a day.  That ain't never gonna happen.  I do well enouogh once or twice and a snack.

[Naynay99]

I actually feel a little bit better at how you all are horrified at the diet restrictions too...

I can have soft cheese, so I eat a cream cheese English muffin every day .  I am trying to have like 2 oz tuna or a hard boiled egg w lunch and then like a small piece of chicken or something w a salad for dinner.  Idk.  The thing I am missing most besides hard cheese is SALT.  I was never big on saltyy food or snacks but now that I can’t have it all I crave is Doritos and bbq potato chips!!  The snack aisle of the supermarket is like the red light distrcict as I look on guiltily at food porn I can’t have!  Sigh.

I did slip last week and ate some raw sugar cookie dough which is prob not on my dietician s okay list l,but ah well. 
I honestly think the hardest part is watching other ppl eat all these forbidden foods without a care in the world.  At least I have no fluid restrictions- I can drink all the water and seltzer I want at least.  I agree it sucks but I don’t think it sucks as bad as having to do dialysis.  I  am still able to hop in the car and drive somewhere new at will and not have to plan my whole life around my dialysis treatments.   Freedom still trumps food in my book, so I am gonna try to stick to this diet as best as I can for now.   

It has made me realize how much of socializing and holidayss and hanging out seems to revolve around eating though. . So I think I need to start having bowling or movie outings in Lieu of grabbing dinner out as going out to eat is really hard.  I do like the idea someone suggested to search for local places around me I know have foods I can order so I will be more prepared.   
My counselor said it sounds like I am depressed over having to follow this diet. I think the whole failing kidney things is probably the bigger thing to be upset about. Complaining about missing eating certain foods seems sort of trivial in the grand scheme of things anyhow.  Idk,

I guess it all sucks.  The feeling of living in limbo is the worst- not knowing when I will need to start dialysis, when ori if I will get a kidney transplant, etc.   l read all these posts from patients and their s/o caretakers and how they are dealing with kidney failure and dialysis and I feel envious bc I don’t have a “we”.  Doing this all alone sucks most of all.   

[MooseMom]

It has made me realize how much of socializing and holidayss and hanging out seems to revolve around eating though. . So I think I need to start having bowling or movie outings in Lieu of grabbing dinner out as going out to eat is really hard.  I do like the idea someone suggested to search for local places around me I know have foods I can order so I will be more prepared.   
My counselor said it sounds like I am depressed over having to follow this diet. I think the whole failing kidney things is probably the bigger thing to be upset about. Complaining about missing eating certain foods seems sort of trivial in the grand scheme of things anyhow.  Idk,

I guess it all sucks.  The feeling of living in limbo is the worst- not knowing when I will need to start dialysis, when ori if I will get a kidney transplant, etc.   l read all these posts from patients and their s/o caretakers and how they are dealing with kidney failure and dialysis and I feel envious bc I don’t have a “we”.  Doing this all alone sucks most of all.   

That feeling of living in limbo is indeed the worst.  I lived that way for 8 years, and I won't deny that it took its toll.

Having to follow the diet IS part of the whole failing kidney thing, so it's not a matter of feeling depressed "just" about the diet.  They are entwined.

Despite the fact that I'm married and have a very supportive husband, the truth is that even a "loved one" isn't necessarily much help.  I mean, how many times over eight years can I say "I'm angry and scared" and have anyone REALLY do anything to help me?  I don't know about anyone else, but I felt very much alone the whole time.  My husband can't take my pills for me or get labs done for me.  Far from sharing everything with him, I kept most of my feelings from him.  I mean, what's he gonna say that would magically take all of my cares away?  I have a "we", but that hasn't shielded me from all the bad stuff that happened.  It's not like he stuck to the renal diet with me.  He'd have that third slice of pizza while I ate something else.  He'd still eat whatever he damn well pleased.  He'd moan about some seemingly trivial thing, and I'd be thinking to myself, "Oh, boo hoo for you.  YOUR kidneys aren't failing, so I don't want to hear it."

You are only as alone as you want to be.  You have people in your life with whom you can share all of these fears if you so chose.  You already know they won't really understand, so you'd have to be very clear about what kind of support you can reasonably expect from them.  They can't read your mind.  You might have to actually TELL them what you want from them.  And what you want might very well change from one day to the next.

But sometimes, it is easier to deal with it alone because then you don't have to worry about the stupid or unwittingly unwelcome things that someone might say to you or do "for" you.

[lulu836]

Sorry to hear you don't feel you have any support.  That must be a terrible way to live.  Mostly I think you are angry at whomever you believe is at fault for your present condition.  If you feel you have no support at home or among your friends then maybe a support group would help.  I do not in any way harbor the feelings, frustrations and anger you have.

[MooseMom]

If you feel you have no support at home or among your friends then maybe a support group would help.

And THAT's why IHD is here!  It's impossible to find a real life support group for renal patients.  Many here have tried to find just that but to no avail.  IHD helped me a lot, and I know it has help many other people, too.

[Naynay99]

Thank you moosemom for your supportive and nonjudgemental responses.  They have helped  me a lot, reading your experience s and how you have dealt with all of this.  Thanks for that.

[Naynay99]

Thanks everyone for yours suggestions and responses.
TAke it easy. . 

[Paul]

It's impossible to find a real life support group for renal patients.

Don't think many really want "face to face" type meetings and prefer anonymous online groups. Take, for example this thread: http://ihatedialysis.com/forum/index.php?topic=34288.0 Cassandra is (was?) trying to organise a British meet up, apart from me the thread got only two British replies, both basically saying "unless you arange it in my town I won't go". It is physically impossible for Cassandra to arrange the event to be close to everyone, and I don't think anyone here is stupid enough to think otherwise, so that is basically a polite way of opting out - no one seems to be interested in actually meeting the people they talk to on this board.

[Charlie B53]

With the advent of the telephone and now the web, face to face meetings are rapidly becomeing a thing of the past.

Once upon a time we were very 'social' creatures, gathering almost daily with family, friends, and neighbors.  Over just my lifetime I have seen so much withdrawal from that personal contact.  Outside of the workplace family, friends and neighbors seldom get together to catch up on whatever has transpired in everyone's lives.

When was the last time anyone went to a 'Block Party'? Parents used to gather one night a week to play cards.  Family Picnics on weekends.

Seems like we are all too busy to make time to be 'social'.

That's just sad.

[kristina]

It's impossible to find a real life support group for renal patients.

Don't think many really want "face to face" type meetings and prefer anonymous online groups. Take, for example this thread: http://ihatedialysis.com/forum/index.php?topic=34288.0 Cassandra is (was?) trying to organise a British meet up, apart from me the thread got only two British replies, both basically saying "unless you arange it in my town I won't go". It is physically impossible for Cassandra to arrange the event to be close to everyone, and I don't think anyone here is stupid enough to think otherwise, so that is basically a polite way of opting out - no one seems to be interested in actually meeting the people they talk to on this board.

Hello Paul,
what you state above does not "ring true", especially if you take into account other IHD-UK-ESRF-people ... because ... travelling does not come easy whilst in ESRF, added to the 3-weekly-dialysis-treatments... and that is why I have pointed out, that I would like to meet in London, if possible ... and ... when you state that IHD-ESRF-people "politely opt out" because they are not interested in meeting other IHD-ESRF-UK-people, this statement of yours is not fair, because people in ESRF are not always able to travel easily and that alone makes "things" very difficult sometimes...

[MooseMom]

I had actually been referring to "support groups" that regularly meet.  I get a small magazine put out by our local hospital that has two pages devoted to support groups that meet once a month, covering topics like diabetes to cancer to people who have suffered from losing a child.  But there has never been any group listed for renal patients, and that's despite the fact that there is a dialysis clinic on the hospital campus (and that's the clinic I would use if I ever need dialysis should my tx fail).  People with other maladies seem fine with "face to face" meeting, but renal patients are offered nothing.  I've been told that that might be because a lot of these people see each other in clinic 3 times a week, anyway.

IHD has an annual meet up in LV.  I went to the one in 2011, and I have to say that it was a real turning point for me.  I was able to see that renal patients could actually survive on dialysis, and of course it was nice to put names to faces.  That meet up was hugely instrumental in my emotional well being.  Unfortunately for me, each meetup since has been scheduled at exactly the same time that I go to England to visit friends and family each year.  But I'd encourage US based IHDers to go, especially if they are struggling.

And what Kristina has pointed out is true...it is not easy for people on dialysis to travel, but in LV, there are dialysis facilities close to the hotel where the gatherings are often held.

[Paul]

what you state above does not "ring true" this statement of yours is not fair

That comment was NOT meant as a dig at you, I was just using you and others as an example in aggregate. I'm sorry if you felt offended or "got at". That was not my intention.

However: I accept that you cannot come, that is your choice, I would not try to force you. But please do not use ESRF as an excuse. Plenty of people at my clinic at the ESRF stage travel a lot, one is even in a wheelchair and would consider South London (where he lives) to Blackpool, no problem. Look through this site, plenty of people talk about travelling. You even mention going abroad yourself, and I intend to be holidaying until I die (or until they discover the bodies under the patio and lock me away in a cell).

In short: I was not having a dig at you, just using a selection of posts as an example that included some of yours. You have every right not to go to Blackpool, it was not my intention to try and force you to do so with that post. But please stop using ESRF as an excuse not to do things. It is not fair on others with ESRF. And more importantly you will have a lot happier life if you work on a principle of finding things you can do with ESRF rather than using it as an excuse not to do things.

[Naynay99]

Hey.  I feel like everybody, including myself, is a bit overly sensitive this week.  (Or maybe it’s just me and I am projecting here?) I think its understandably so though, as online forums are not the same as live people and things can be easily misconstrued without the benefit of facial expression and voice tone.   That’s easy to forget and is the reason that an innocuous online support forum comment telling me to go find a support group and that my existence is a terrible way to live made me cry yesterday.  So, yeah...

Hmm.  If we can’t use ESRF as an excuse to not travel, can we at least play the kidney failure card to get out of hideously boring obligatory activities such as bridal showers or attendance at tricky trays and shiit?  “Sorry I would love to attend your candle party where you try to get us to buy expensive crap that nobody wants, but well you know, there’s the whole kidney thing...”.    “I’m sorry but I need to cut this 30 minute ladies room bathroom line, I have a failing kidney transplant”...  Lol.  Just kidding- trying to add a bit of levity here.   

Anyway, I think it is cool that some of you all meet up in LV.  If I wasn’t newly listed and still nervous that the one time I travel farther than a 4 hour radius will be the only time a matching kidney ever shows up I would totally be there. I’m sure if/when I am waiting years and years that attitude will change.   

Anyway there was no point to this post, just me rambling on.  Sorry.
I do agree w moosemom that almost every other malady has IRL support groups widely available. I used to attend one for depression and it really helped to feel less alone.  So I am grateful that somewhere like this exists as an option.  Too bad the internet didn’t exist back when I was 12 and going through all of this for the the first time.  It would have been nice to not have felt like a total freak bc I didn’t know or even hear of a single other person going through what I was. 
Take it easy all.