I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Naynay99 on May 10, 2018, 01:49:01 PM
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Hey. I was just wondering how much of an effect kidney failure has on one’s brain. My memory and concentration have been total shiit lately. I’m not on dialysis yet, still have some kidney function left. But I feel like I’m in a fog or something. I keep forgetting things, and I was having trouble doing basic math earlier today at work.
Maybe it’s just stress, i don’t know. But I feel like I am totally failing at being a productive human being lately. I feel like I am doing a mediocre job at work, at least from my high standards anyway. And I have been having some word recall problems. Perhaps it is my mood? When I get depressed I think my IQ drops many points.... if it is my kidney, well it’s not like I can do anything about it but maybe it would make me feel better to know my brain is not also failing. Idk. I think I need a vacation or moratorium on worrying about and thinking about kidney stuff for a while. If my one friend asks if my dr knows when I will need to start dialysis one more time I may have to hurt him. Anyway, just wanted to say hi and figured I would ask if anyone else has dealt with brain crap out. Take it easy.
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One sign of knowing when its time for D is being tired and lethargic - lethargic that's from the word (lethargy) see:
http://www.dictionary.com/browse/lethargy
lethargy
[leth-er-jee]
noun, plural lethargies.
1.
the quality or state of being drowsy and dull, listless and unenergetic, or indifferent and lazy; apathetic or sluggish inactivity.
2.
Pathology. an abnormal state or disorder characterized by overpowering drowsiness or sleep.
I could see how one person's lethargies manifesting as being tiered all the time (me pre dialysis and any weekend my entire life), yet another's manifestation be a brain fog.
I don't remember being off kilter memory wise prior to dialysis but when I tried to work after dialysis sessions I was in a brain fog. (Happily I did afternoon shifts and only occasionally did morning shifts with work afterwards.)
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Yeah, remember kidney insufficiency means toxic blood circulating everywhere (including your brain). My hubby became a bit of a zombie before dialysis.
Of course, it could be other things, too: I don't know about your other health issues (if any), but being in a fog is also part of blood sugar problems (too much and/or too little), dehydration, reduced levels of serotonin, lack of sleep...
Here's an article with more ideas, in case it's not your kidneys: https://www.healthline.com/health/brain-fog.
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I can think much clearer since starting dialysis and my labs improved, but I still have those days, especially after treatments, when all I want to do is take a nice long nap!
Some claim the brain is much like all the other muscle, that it will atrophy without regular use. Aging can take a toll on brain function, especially for those that sit and vegetate in front of the TV. Books, puzzles, and games that require concentration, exercising brain function does help sharpen thought.
I try, it can't hurt.
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Prior to starting dialysis, my brain was definitely foggy. I couldn't concentrate, had no empathy, very irritable. Now since dialysis I'm back to normal, doing crosswords, reading nonfiction, and am my usual chipper self. I chalked it up to uremia. Didn't know how sick I was until I was better.
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Yep. I'd even venture to say it started for me at late Stage 3, early Stage 4. No one warned me about that particular issue, and it happened so gradually, so it was hard to understand what it was going on.
During the lead-up to dialysis, I always felt better when I got plenty of rest. I was working at home for most of that time, so I'd try to take a little nap after lunch so I could feel cohesive enough to work another four hours.
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Hey. I was just wondering how much of an effect kidney failure has on one’s brain. My memory and concentration have been total shiit lately. I’m not on dialysis yet, still have some kidney function left. But I feel like I’m in a fog or something. I keep forgetting things, and I was having trouble doing basic math earlier today at work.
Maybe it’s just stress, i don’t know. But I feel like I am totally failing at being a productive human being lately. I feel like I am doing a mediocre job at work, at least from my high standards anyway. And I have been having some word recall problems. Perhaps it is my mood? When I get depressed I think my IQ drops many points.... if it is my kidney, well it’s not like I can do anything about it but maybe it would make me feel better to know my brain is not also failing. Idk. I think I need a vacation or moratorium on worrying about and thinking about kidney stuff for a while. If my one friend asks if my dr knows when I will need to start dialysis one more time I may have to hurt him. Anyway, just wanted to say hi and figured I would ask if anyone else has dealt with brain crap out. Take it easy.
Hello and I am sorry that you feel like that at the moment, but the symptoms you describe are unfortunately a "side-effect" of failing kidneys. The thoughts become foggy and a bit scrambled, due to the fact that the failing kidneys are completely over-challenged and as a result the blood is not being "cleaned" naturally any longer. The process of getting into a kidney-failure-fogginess develops at first very slowly, almost insignificantly, but then one slowly "glides" fully into it. This fogginess only "clears-up" through dialysis and I was surprised how clearly I suddenly could think again after my first few dialysis-treatments...
Good luck and all the best from Kristina. :grouphug;
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Also I should note if this is a pre dialysis symptom then hopefully its something that is cleared up as you transition to dialysis. Increased energy and overall feeling better is usually the first positive sign of dialysis working. But as you can read from everyone's stories new side effects might crop up.
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I was actually pretty well during my long pre-dialysis years. I was never anemic, and the meds I took protected me from a lot of side effects of progressing renal failure.
Perhaps I am overstating how "healthy" I was physically and didn't realize at the time how renal failure was affecting me mentally, but what I CAN say is that the toll on me was FAR greater psychologically that physically.
I just remember years of trepidation and fear. Every time I had to see my neph for my latest lab results, I was consumed with anxiety. I knew that my numbers would never get better, rather, it was just a matter of seeing how slowly (or quickly) they were getting worse. I spent 8 years in a state of high anxiety, so in my very humble opinion, any brain fog I experienced was probably due to having my brainspace occupied more by terror than by critical thinking or recall abilities.
I'm sure that all of the studies that show that bad kidney function results in poorer cognitive function are true, but until my dying day, I will insist that ongoing, unrelenting fear plays a bit part of it. But doctors and researchers don't ask questions of that nature, do they? When they study the decline in cognitive function, do they ever study the rise in the psychological burden that comes with knowing you have a disease that will end up putting you on a treatment like dialysis? I'd bet not.
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Well said, MM. That mind/body connection is strong.
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Hey. Thanks for all your replies. Idk what this is. Right now I am actually feeling like I am losing my shiit so the brain fog isn’t much of a concern to me at the moment. Perhaps it’s the kidney, or stress, or terror as one of you said. Idk. Will see if it gets better or worse or what.
Anyway right now my mood is total crap, I’m in a very dark place today, and depresson is taking over. (Thanks prednisone for that parting gift). This strict renal diet I’m following has sucked all joy out of eating and I would almost rather just not eat at all than have all my favorite foods taken away.
How do you people keep doing this everyday? I’m not even on dialysis yet and I can already say that if I don’t get a transplant for years and years that I will most likely opt out of all of this and check out early. It’s too hard. Perhaps I’m just seeing things thru gray glasses today and things will look up soon...?
Take it easy.
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After starting dialysis I felt much better physically and mentally. Hang in there, it gets better.
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My hubby's kidneys were damaged but stable for almost 20 years. We were hoping they'd stay at that level, but then he got dehydrated and that started the beginning of the downward spiral that resulted in dialysis. During that spiral, we were so gloomy, so sad. We were in mourning for what was being lost. We were also scared of what was to come. It was literally dread-full.
There's no magic words that I can think of to make it all better: It makes sense to me that it would be a time of mourning, and a lonely one at that.
But little by little, the shock subsided and we got into some routines. My hubby doesn't have the strength (or even hours awake) that he used to, and we both still get aggravated about that.
Our diet changes were emotionally tough, too, perhaps like yours. I felt lost and afraid, not sure what to buy at the grocery store, not sure what to prepare. It took several weeks but we finally got a new set of meals and foods that we like and that work for his diet.
It's not easy, it's scary, it's lonely, it's dreary. But it gets easier and less scary, and the more we can talk to friends and family about it, less lonely too.
We're not waiting for a transplant - hubby says "no thanks" - so we're making this dialysis gig work as long as it can.
I think it helps that we're in this together, and I truly hope you have one other person in your life who can help - even just to talk to.
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Anyway right now my mood is total crap, I’m in a very dark place today, and depresson is taking over. (Thanks prednisone for that parting gift). This strict renal diet I’m following has sucked all joy out of eating and I would almost rather just not eat at all than have all my favorite foods taken away.
How do you people keep doing this everyday?
Believe it or not, you do get used to it. It takes a while, but eventually it becomes the "new normal". Not sure if that is good news or bad, but believe me when I say that the hell you are going through will pass.
As to the renal diet sucking. Look at the recipe section of this board. Research what you can and can't eat and make up a menu of the things you like best from this list. A lot of us search out alternatives for our forbidden favourites. Things that are similar-ish but lower in potassium and phosphorus. Also we find different ways to so things. For example I like stew. Meat, vegetables, potatoes, and lentils boiled up in the same pan. Sadly this would concentrate the potassium/phosphate in the veg and potatoes, and lentils are fairly high in potassium (not absolutely forbidden by my dietician, but I'm allowed so few that they get lost in a stew). I still eat this, but I select vegetables that are lowest in potassium/phosphate. I boil the vegetables and potatoes separately to everything else, drain them (this removes some of the potassium/phosphate) then add them to the meat at the last minute. The lentils I have replaced with rice, which is much lower in potassium, and has the same "mouth feel" to lentils (the difference in taste does not matter as it is boiled in meat gravy, so both taste meaty, it is the texture and shape that matter).
And I'll let you into a secret: Once you go on dialysis it will take the machine a few weeks to get your blood back to "normal", but when it does you can cheat a little. Not often, and not a lot, but just the occasional thing you like but shouldn't, it makes life bearable.
Hang in there, it is hell at first, but it does get better.
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Hey. I was just wondering how much of an effect kidney failure has on one’s brain. My memory and concentration have been total shiit lately. I’m not on dialysis yet, still have some kidney function left. But I feel like I’m in a fog or something. I keep forgetting things, and I was having trouble doing basic math earlier today at work.
Maybe it’s just stress, i don’t know. But I feel like I am totally failing at being a productive human being lately. I feel like I am doing a mediocre job at work, at least from my high standards anyway. And I have been having some word recall problems. Perhaps it is my mood? When I get depressed I think my IQ drops many points.... if it is my kidney, well it’s not like I can do anything about it but maybe it would make me feel better to know my brain is not also failing. Idk. I think I need a vacation or moratorium on worrying about and thinking about kidney stuff for a while. If my one friend asks if my dr knows when I will need to start dialysis one more time I may have to hurt him. Anyway, just wanted to say hi and figured I would ask if anyone else has dealt with brain crap out. Take it easy.
I STILL have word recall problems even though I'm on dialysis. Drives my husband nuts! ;D A common one is "I need my arm-thingie" AKA blood pressure cuff. Sometimes I just can't come up with its name.
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Regarding the pre-renal diet, again, it takes an emotional/psychological toll, and that goes back to what I'd said about the effect of fear and frustration on one's emotional wellbeing.
I hated the IDEA of the renal diet. On its surface, it seems so counterintuitive in that it bans the foods one usually thinks as being good for you.
And it is so negative. You're drilled on what you can't have instead of being steered toward foods that GIVE you something nutritionally.
Being pre-dialysis makes you feel like you're out of control. There's that emotional toll again. I, personally, seized upon the restrictions of the diet like a lifeline. I figured it was the one thing I COULD control, so I went all in. I didn't have a potato for eight years. I found the things I could safely eat, and I stuck to those. The foods I had to give up became far less important to me than the ones I could eat and the sense of control over my life those "safe" foods gave me. Control became more important to me than food.
Does that make sense?
I swiftly got to the point that I just didn't want the foods I knew would harm me. It became easy to avoid them.
I don't think most people view it this way. I didn't set out to turn to this mindset, rather, it just happened. I'm glad it did because it made the whole diet issue into a non-issue.
I'm telling you this because it occurred to me that maybe you could try to adopt this strategy, too.
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A renal diet does not have to be tasteless. DaVita and Fresenius have a number of cookbooks available for downloads to show us how to vary our cooking methods.
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DaVita and Fresenius have a number of cookbooks available for downloads to show us how to vary our cooking methods.
I think Fresenius have discontinued this but DaVita still provide cookbooks though, as well as several other people. There are a few links below. Most are PDF files, the majority of eReaders can cope with this, if you have a computer it may have a PDF reader as standard, but if yours doesn't, you can download a free PDF reader from Adobe (the creators of PDF). Or if you prefer - some browsers (e.g. Chrome) treat PDF files as web pages, if you use a browser like that you can read the cookbooks online without a PDF reader (or having to download them).
Free PDF reader for Windows 7 or above: https://get.adobe.com/uk/reader/
Free PDF reader for Windows XP, Mac OS, or Android: https://get.adobe.com/uk/reader/otherversions/
For Linux etc.: They do exist but you will have to use Google as I've never used one.
Links to the Free cookbooks (if you want to download the books, then when you get to the pages with the books on them, you may need to right click and select "save target as" because some browsers, such as Chrome, will open the books in a browser window rather than save the file):
DaVita: https://www.davita.com/cookbook
NKF (British kidney charity): https://www.kidney.org.uk/help-and-info/books/books-foodwiththought/
Guy's & St Thomas': (British NHS hospital) https://www.guysandstthomas.nhs.uk/resources/patient-information/kidney/everyday-eating-recipe-book-for-kidney-patients.pdf (N.B. This link goes directly to the PDF file.)
DCI: http://www.dciinc.org/recipes/
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“I think it helps that we're in this together, and I truly hope you
have one other person in your life who can help - even just to talk to.”
Yeah, I would imagine it is easier not doing this alone. I do have a good friend, and my Mom, who I can talk to, but they don’t understand nor live it on a day to day basis It is just me and my kitties so I have to rely on myself which can be tough. I wish I had somebody on my side to pick u the slack when it gets to be too much.
I think food is the same thing. It’s just so much effort to look up recipes and food shop and cook and clean up every meal every day. It’s not like I am cooking for a family- it’s just me. I used to go out to eat a lot with friends and being on this diet sort of makes me feel like I am now seeing ppl less bc I am trying to avoid eating out, or else things just seem weird with me searching the menu for something I can eat and getting to watch them enjoy my favorite fooods. It just sucks.
I really do appreciate all the support on here, and ideas and links to recipes and cookbooks. I have tried some recipes, I’m just tired of working so hard just to feed myself. It seems easier to just not eat or have some cereal or carrots or apple and call it a day. I I know I sound whiny complaining about dumb stuff like food.
It amazes me how positive u all seem to be with dealing with this crap. I feel like there is something wrong with me that I am so disgruntled and you all are handling this so well. Bc I am a fuucking hot mess, at least inside my own head. I can keep it together most of the time but sometimes it just seems so unfair, seeing all my friends without a care in the world.
Perhaps it is so hard bc I have lived my whole life with a successful transplant that u start to take for granted being healthy, and i am now having to relive all that crap I had to deal with as a kid all over again. Idk. I am rambling.
I will attempt more recipes and work on trying to change my mindset. I will. But right now i am gonna feel sorry for myself a bit longer and miss my old life of being able to eat chocolate ice cream or eggplant parm and having the freedom to leave the country at a whim...
Sorry for the rant. Maybe I just expect too much but this chapter of my life is pretty much sucking. And having no one in real life who gets it makes me feel totally isolated and alone and broken.
Anyway thanks for the replies. Take care.
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“I think it helps that we're in this together, and I truly hope you
have one other person in your life who can help - even just to talk to.”
Yeah, I would imagine it is easier not doing this alone. I do have a good friend, and my Mom, who I can talk to, but they don’t understand nor live it on a day to day basis It is just me and my kitties so I have to rely on myself which can be tough. I wish I had somebody on my side to pick u the slack when it gets to be too much.
Neither your friend nor your mom will be able to understand it, but that's OK. They don't need to UNDERSTAND to know that you feel bad and frightened. You don't have to actually have cancer to know that cancer is bad.
I think food is the same thing. It’s just so much effort to look up recipes and food shop and cook and clean up every meal every day. It’s not like I am cooking for a family- it’s just me. I used to go out to eat a lot with friends and being on this diet sort of makes me feel like I am now seeing ppl less bc I am trying to avoid eating out, or else things just seem weird with me searching the menu for something I can eat and getting to watch them enjoy my favorite fooods. It just sucks.
This is a tough one. It's hard to go out with other people because sometimes your mind gets so filled with the fear and worry that there is just no ROOM for socializing. And watching them eat without a care in the world...without having to think about potassium...just keeps reminding you of what you are losing and what may be in store for you. You work hard to maintain some sort of emotional equilibrium, and then BAM...."There's always something there to remind you!" You watch your friends eat stonking great baked potatoes, and there you go again, back into the abyss. Who wants to torture themselves? If you actually miss having more people around, could you maybe arrange something that doesn't include food? The movies? A concert?
I really do appreciate all the support on here, and ideas and links to recipes and cookbooks. I have tried some recipes, I’m just tired of working so hard just to feed myself. It seems easier to just not eat or have some cereal or carrots or apple and call it a day. I I know I sound whiny complaining about dumb stuff like food.
There's nothing "dumb" about food. It sustains us, nourishes us, pleases us. People feast for a reason...to celebrate, to mourn, to share. In saying that, though, if it was just me, I doubt I'd actually cook for myself. I'd make salads or sandwiches and call it a day, too. I have lunch on my own as it is, and that's exactly what I do. The pre-renal diet gets complicated.
It amazes me how positive u all seem to be with dealing with this crap. I feel like there is something wrong with me that I am so disgruntled and you all are handling this so well. Bc I am a fuucking hot mess, at least inside my own head. I can keep it together most of the time but sometimes it just seems so unfair, seeing all my friends without a care in the world.
I've always thought the same thing! "How on earth can these people be so damn positive?" because believe me, I WAS SO NOT! I was a "fuucking hot mess" and tried everything not to be. Seriously. I tried biofeedback, meditation, psychiatry, counseling, everything but medication (I reckoned I already took too many meds and was wary about mucking about with them). I DID find that exercise was the one thing that consistently helped. Swimming, walking, anything that required me to get outside and MOVE. Nighttimes were the hardest.
Perhaps it is so hard bc I have lived my whole life with a successful transplant that u start to take for granted being healthy, and i am now having to relive all that crap I had to deal with as a kid all over again. Idk. I am rambling.
I apologize if you've already talked about this, but where are you in the process of getting a new transplant, because in my waters I knew that the only thing that was gonna help me was a transplant. I can imagine few things worse than losing a transplant after so many years with a successful one.
I will attempt more recipes and work on trying to change my mindset. I will. But right now i am gonna feel sorry for myself a bit longer and miss my old life of being able to eat chocolate ice cream or eggplant parm and having the freedom to leave the country at a whim...
Sorry for the rant. Maybe I just expect too much but this chapter of my life is pretty much sucking. And having no one in real life who gets it makes me feel totally isolated and alone and broken.
Anyway thanks for the replies. Take care.
There were plenty of days when I awoke and realized immediately that this was going to be a hard, sad day, and sometimes I just couldn't fight it. I finally gave myself permission to feel bad if, despite my efforts, that mood just would NOT shift. It's ok.
IHD made such a big difference to me. I know it is not real life, but it's a very good second choice. I don't think most people are even aware that they know someone with failing kidneys or are on dialysis. It's just not a medical condition that most people are aware of. But we IHDers know all too well what it feels like, and you can post here at 3AM if you want! When I was feeling especially horrible, particularly at night, I'd come to IHD instead of calling my husband or waking him up. You can post whatever you want, whenever you want, and no one is going to judge you or make you feel bad for not being more entertaining. Here, you don't have to worry about what anyone thinks, and you don't have to contend with people who secretly wonder just what you're on about! You don't have to worry about making THEM feel bad or bored or whatever. People in real life can be disappointing.
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I used to go out to eat a lot with friends and being on this diet sort of makes me feel like I am now seeing ppl less bc I am trying to avoid eating out, or else things just seem weird with me searching the menu for something I can eat and getting to watch them enjoy my favorite fooods.
I eat out about once every week or two, and have take aways about the same number of times. Here is how I work it:
Visited the local eateries alone at first, looked through their menu and picked out the meals I could eat and noted them down. I now have a list of what local eateries serve something I can eat, and what it is.
Some places have nothing I can eat. So I ask if they can swap things round. EG "Can I have the lamb dish, but without the kidneys, and could I have rice instead of roast potato" I have never yet been refused.
With this list, when I eat out with a friend or relative, I go through it to find one that has both meals I like and my guest likes. Not as hard as you would think. Even in situations that seem impossible. For example my sister is a vegetarian, so we eat in vegetarian restaurants. Think how few vegetables you can eat, and think how hard it is finding an entire meal of vegetables that you can eat. Well actually, not too hard. Found an Indian vegetarian eatery that had a mile long menu, several things I could eat. Found a smaller vegetarian place, only one thing I could eat, but fortunately it was delicious.
Best result: Cafe just five minutes walk from home has a menu that lists everything they do by item rather than meal. I can pick items I can eat from that menu and make up a kidney friendly meal easily.
As I said, I eat out once every week or two. Occasionally I cheat a little, but most often I don't. It just takes a little research to find what you need.
Take away (take out) places are harder. Some have nothing I can eat, some insist on serving fries with everything, and bloody McDonald's insists on putting loads of salt on or in (or both) everything. Never had their ice cream, but I bet that has salt in it too! But about half of the places I have tried have at least one dish I can eat. A choice of one dish may seem boring, but there are several take away places local to me, all types, and that one dish varies from place to place. Plus some have more than one dish. So I get variety, I just have to eat at different places.
And only having one dish you can eat has it's advantages. There is one take away place that knows I only ever have the same thing. Occasionally I'll walk in and there is a queue. Usually the cook will see me at the back of the queue, nod to me, and put my order on to cook. So I get my food before people who are in front of me in the queue. Great service.
So please don't feel you cannot eat out. It takes a bit more work when you are on a special diet, but remember, a lot of people are on "fad" diets, many people have allergies or intolerances, so places that serve food are used to catering to a customer's difficult menu. True, a few don't, but you can always recognise them - they are the places going bankrupt! The good ones (IE the majority of them) will happily cater for you, but you have to know what you can and cannot eat. No good asking "What do you have that is low in potassium and phosphate". But say "Can I have item seven but without the sliced tomato, please." And that is what you get.
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Just thought: If you are looking for an easier option. There is a fad these days for buffet type restaurants (usually "all you can eat for $XX" type deal), I have two within walking distance of my home (and I cannot walk very far these days). There are also places who do the buffet thing on just one day of the week (most commonly Sundays for some reason). These are easy for people with difficult diets. You take your plate to a table and pick the items you want from a (usually) large selection, so can just take what is OK for you.
Although watch out for pizza restaurants who do this. There used to be one near me (gone now) that offered slices of pizza. As many as you want for £9.99. Large selection of toppings to choose from. Only problem was, the only thing the did were pizzas, large choice of toppings, but every one on a thick tomato base - useless to us.
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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.
Paul and everybody- thanks for all the ideas for the diet and going out to eat. U give some really good suggestions. I Will look at some places menus before going out so am more prepared. Thanks.
Alright, so this thread changed from being about brain fog to me being a crazy mess to me being upset at the limitations of a renal diet. 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. the only thing that helps is driving while blasting really loud music or screaming in my car. Which makes me sound like a crazy person so I dont tell people. Ah well.
Anyway have a great night everybody.
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If your doctor has you on Beta blockers a side effect is they slow your thinking. After my first heart attack I was but on beta blockers and it reminded me of a old story and movie flowers for algernon. Every day I got more stupid, doctor stopped beta blockers and for a couple of weeks I felt smarter and smarter.
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Michael- I loved that book! Read it a long time ago.
Stupidity could be from meds. Who knows. All I know is that I was working up to the Wednesday xword puzzle and I have now been demoted back down rto Monday. Sigh.
Ah well. It’s a good thing I started out smarter than the average bear, with my newfound stupidity I seem to blend in well with everyone else now! Haha. (Just kidding!)
Good nite. Take it easy.
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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!
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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.
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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?
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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.
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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. :grouphug;
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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. :) .
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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.
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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.
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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?
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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.
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I'm so glad your bloodwork numbers are good :clap; 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.
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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.
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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.
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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.
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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.
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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.
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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. :thumbup;
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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.
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Thanks everyone for yours suggestions and responses.
TAke it easy. .
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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.
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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.
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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...
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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.
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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.
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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.
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Oh naynay, I do hope that I have not inadvertently said anything that has made you feel bad! You are SO right in saying that online posts can easily be misconstrued or misinterpreted. And it IS true that we all of us are dealing with a particular set of burdens that can make us "sensitive".
By all means we can play the kidney card to get out of all manner of things. I always figure that my presence or absence will go unnoticed in a crowd. But there were certainly one or two occasions that I can remember when I felt so hideously depressed that my absence from some celebratory event would actually be welcomed! I didn't want to be a wet weekend!
I didn't travel any further away than 2 hours from my tx center when I was newly listed, so I get ya there! If you feel more comfortable staying close to home while on the list, then that's what you do. That's what most people do.
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MM- No don’t worry u didn’t say anything. It doesn’t take much to make me cry these days anyway.
II’m embarrassed to say I cry in my car sometimes so that by the time I arrive at my destination and enter my outside life I can appear fine. I don’t let other people see the crazy. Especially around those people who desperately need me to be okay.
In regard to forum comments, I look at online forums and support groups like I do religion- take what is useful and helpful and relevant to you and leave the rest. Or at least that is what I strive to do, even if I fail most of the time and take it all to heart.
Part of me feels guilty that my parents are planning a vacation this summer up by me instead of down by my brothers lake house bc I don’t want to travel that far. But then I think how ridiculous it is that I feel guilty that my kidney failure is inconveniencing others leisure plans. Idk.
The staying close to home thing is hard but I know I would fret the whole time away. But the best thing that my transplant gave me was total freedom to travel the world and see lots of cool shit. I am twitching and feeling claustrophobic at the prospect of not being able to leave the country any time soon. Ah well. I will just have to find closer adventures for now.
Take care and have a good Night.
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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.
Many thanks MooseMom for your kind understanding, it is very much appreciated!
End stage kidney failure and dialysis can be very challenging at times and it is so heartwarming to know of you and your kind understanding.
Thanks again and kind regards from Kristina. :grouphug;