I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on March 20, 2006, 11:38:41 PM
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Dear God:
I am looking for a normal life. When can I have one?
Is it normal:
To go to dialysis three days a week?
To have people who know more about your medical records than you do?
To have the left arm punctured by needles that look like half penny nails six times a week?
To feel tired all the time, I mean really, really tired?
To have to leave my house and go for "treatment" three days a week?
To see a doctor at least once a month whether you want to or not?
To have your life scheduled around dialysis three days a week?
To have to plan vacations three months to a year ahead of time so you can schedule "youknowwhat"?
To have to watch every morsel of food that goes into your mouth?
And to have someone checking up on you while you eat: well meaning family or friends?
To be thirsty all of the time? Sometimes I feel like the Sahara Desert.
To not be able to drink the large size of anything?
To miss diet Coke and Dr. Pepper?
To stare at a banana longingly in the grocery store and walk away from it?
To vaguely remember what a potato chip tastes like because last time you ate some you threw them back up?
To eat ice chips all day long? (Go ahead offer me an ice chip.)
To gain 3-5 kilos body weight in two to three days?
To have to run from work at a certain time because you can't be late to dialysis?
To get sick every now and then and end up in the hospital?
Knowing your death is coming and will probably be dialysis related?
To be told horror stories by other people, who are not on dialysis. but think you should know about it anyway?
To know the nurses and techs by name when you see them in the unit but not recognize them without their uniform in public?
To have blood work done every week and get results once a month, and then be told to watch what you eat and drink? Like I don't know this already?
To want to run around screaming your head off because nobody understands but the people at the message board IHateDialysis.com?
To want to strangle people with your bare hands at their insensitivity, especially people who should know better? (Drs., nurses, techs, your spouse, children, mother)?
To know deep down that if I stopped to think about all of this I would run screaming in circles and need a padded room?
I don't even have words to end this prayer.
Katherine
Thank you for letting me rant. I had no idea it had built up to that point. You can add to it if you want to.
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To know that it costs at least $3,000 per session to keep me alive? Maybe more! I don't know how much the Iron or Zemplar (sp) costs! I'm really "hung up" on the cost of this "life support" procedure. >:D A transplant isn't much better. After surgery of bookoo bucks then you have labs and anti-rejection drugs which are like $40,000 a year. Beats Dialysis, but still costs too damn much.
Geritol has it right... "When you have your health, you have just about everything."
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my sentiments exactly... :o 8)
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amen brother amen!! Thanks for putting into words how I feel everyday. I just ran around the room screaming my head off.. think that blew off some steam! I guess god or whoever can't throw much more at us!
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Dear God:
I am looking for a normal life. When can I have one?
Is it normal:
To go to dialysis three days a week?
To have people who know more about your medical records than you do?
To have the left arm punctured by needles that look like half penny nails six times a week?
To feel tired all the time, I mean really, really tired?
To have to leave my house and go for "treatment" three days a week?
To see a doctor at least once a month whether you want to or not?
To have your life scheduled around dialysis three days a week?
To have to plan vacations three months to a year ahead of time so you can schedule "youknowwhat"?
To have to watch every morsel of food that goes into your mouth?
And to have someone checking up on you while you eat: well meaning family or friends?
To be thirsty all of the time? Sometimes I feel like the Sahara Desert.
To not be able to drink the large size of anything?
To miss diet Coke and Dr. Pepper?
To stare at a banana longingly in the grocery store and walk away from it?
To vaguely remember what a potato chip tastes like because last time you ate some you threw them back up?
To eat ice chips all day long? (Go ahead offer me an ice chip.)
To gain 3-5 kilos body weight in two to three days?
To have to run from work at a certain time because you can't be late to dialysis?
To get sick every now and then and end up in the hospital?
Knowing your death is coming and will probably be dialysis related?
To be told horror stories by other people, who are not on dialysis. but think you should know about it anyway?
To know the nurses and techs by name when you see them in the unit but not recognize them without their uniform in public?
To have blood work done every week and get results once a month, and then be told to watch what you eat and drink? Like I don't know this already?
To want to run around screaming your head off because nobody understands but the people at the message board IHateDialysis.com?
To want to strangle people with your bare hands at their insensitivity, especially people who should know better? (Drs., nurses, techs, your spouse, children, mother)?
To know deep down that if I stopped to think about all of this I would run screaming in circles and need a padded room?
I don't even have words to end this prayer.
Katherine
Thank you for letting me rant. I had no idea it had built up to that point. You can add to it if you want to.
Awesome rant, this is what this site is all about. I was wondering why their wasn't not more posts like this. Anyway that rant is close to my heart.
- Epoman
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I know this was just a "rant" but I HOPE you do eat some things you want and have a small Dr. Pepper sometimes! 8)
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I pretty much eat what I want to eat, but have had to begin to cut out some things. The longer I am on dialysis is seems the more foods I get sensitive to or the higher my numbers go. Never had a reaction to chocolate cake before this month. Itched like fricking crazy all night from it. Off the list for sure. Diet coke makes me itch. And spicy foods make my hands tingle all the way to my finger tips. Weird huh? I still eat spicy foods, but in moderation. I try to keep track of the itchy stuff. Geez I would hate to itch any more than I already do after dialysis. I guess the longer you are at it the stronger some things affect you.
I absolutely hate for anyone to tell me what I can and can't have. It sets up a stubborn butt in me that will not let it go! So naturally the renal diet makes me crazy!!!
Katherine
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I am reading this thread on a computer at school, right in the main staffroom where lots of people are sitting around or milling around, and I am in tears!
The honesty was just too much for me!
Had to run to the bathroom for a minute.
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Now I'm in the safety of my living room! When I ran to the bathroom, a school counsellor HAPPENED to be in there. I couldn't help myself. I was so ashamed of weeping. I am normally upbeat, but seeing up close all that this really is, was a bit overwhelming. I have had my meltdown moment, and now I am back to normal (normal, what is that?!?!?!)
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Please don't be ashamed of weeping. Sometimes we need to let it out, unfortunately you just did it in front of someone you didn't want to see you do it. I watched the show about the angels, (I think it is called touched by an angel), or something like that, and before the end of it I cried my eyes out. It wasn't even that sad, but I just needed to let everything out and have a good cry. I am sure we have all done it at one time or another. Liz ;)
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My boss has a BOX of Kleenix in his office with my name on it! :(
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Hey God
I forgot to mention the itchy skin I have now every day of my life. I am going crazy with it some nights. How about an angel with some miracle lotion for me.
Katherine
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Hi every one , Have felt like this before but keep reminding myself how shitty I felt before my 3x4hrs in the chair. Am lucky to be doing it at home. Doing Hemo in unit can get depressing. Sure it felt good screaming that one.
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At the moment everything is costing me about $50 a month. I cant complain I guess. But I laugh at the government who give us a pharmaceutical allowance of $5.80 per fortnight!
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At the moment everything is costing me about $50 a month. I cant complain I guess. But I laugh at the government who give us a pharmaceutical allowance of $5.80 per fortnight!
A fortnight is a unit of measurement of time equal to two weeks: that is 14 days, or literally 14 nights. The term is most commonly used in British English. It derives from the Old English feowertiene niht, meaning "fourteen nights".
:P Hey, I had to look it up. :-[
;D
- Epoman
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English from the correct side of the pond. Didn't know that you guys didn't use the term 'fortnight'. We still do, though it is slipping a bit with this generation which gets its English from US television!
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I figured out what a fortnight was when I read Little Women.. when I was 11... ;)
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Thanks Epoman. I thought it was a spelling error! ;D
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I have learned to always find the good to all bad. Please read on...
Dear God:
I am looking for a normal life. When can I have one?
Is it normal:
To go to dialysis three days a week?
*Thank You God for dialysis, it is better than being six feet under in a wooden box.
To have people who know more about your medical records than you do?
*Thank You God for those who care enough about me to know more about me than i do.
To have the left arm punctured by needles that look like half penny nails six times a week?
*Thank You God for the techs that are trained to do this.
To feel tired all the time, I mean really, really tired?
*Thank You God for the strength to open my eyes and see the sunshine and a little bit of strength to go outside and smell the roses.
To have to leave my house and go for "treatment" three days a week?
*Thank You God for creating the clinic for me to go to "try" and make my life as healthy as it can possibly get.
To see a doctor at least once a month whether you want to or not?
*Thank You God for those drs. who went to school and studied to help make sick people such as myself feel better.
To have your life scheduled around dialysis three days a week?
*Thank You God for giving me a life to schedule anything anytime, period.
To have to plan vacations three months to a year ahead of time so you can schedule "youknowwhat"?
*Thank You God for giving me the ability to take a vacation, even if it is for a couple of days or even if i have to plan it ahead of time, at least i am able to take one, i know there are many out there who cant, AND THEY ARE HEALTHY!!!
To have to watch every morsel of food that goes into your mouth?
*Thank You God for giving me even the little food i can eat.
And to have someone checking up on you while you eat: well meaning family or friends?
*Thank You God for my family and friends who care enough about me to watch over me.
To be thirsty all of the time? Sometimes I feel like the Sahara Desert.
*Thank You God for ice chips
To not be able to drink the large size of anything?
*Thank You God for creating the small glasses too.
To miss diet Coke and Dr. Pepper?
*Thank You God for the clear sodas and the water, Thank you for what we CAN drink.
To stare at a banana longingly in the grocery store and walk away from it?
*Thank You God for the willpower to walk away from that that i cannot have.
To vaguely remember what a potato chip tastes like because last time you ate some you threw them back up?
*Thank You God for showing my body how to reject all that is bad for me.
To eat ice chips all day long? (Go ahead offer me an ice chip.)
*Thank You God for the Sahara Desert cuz without ice chips i am sure that is what i would feel like.
To gain 3-5 kilos body weight in two to three days?
*Thank You God for the machines that are able to remove the body weight as i put it on.
To have to run from work at a certain time because you can't be late to dialysis?
*Thank You God for the ability to work even though i am ill and thank my job for keeping me on even though they know my illness.
To get sick every now and then and end up in the hospital?
*Thank You God for the hospital and its staff for being there to care for me when i need them.
Knowing your death is coming and will probably be dialysis related?
*Thank You God for giving me all the sunrises, sunsets, flowers, birds and all the beauty the world has to offer, i will cherish it until my dying day.
To be told horror stories by other people, who are not on dialysis. but think you should know about it anyway?
*Thank You Fod for giving me the ability to hear what other people have to say, although it may not be something i want to hear, maybe they just need to vent and get it off their chest or maybe i can offer some helpful advice.
To know the nurses and techs by name when you see them in the unit but not recognize them without their uniform in public?
*Thank You God for the nurses and techs that have become my friends and although i may not recognize them outside of the clinic, they recognize me and ask me how i am doing.
To have blood work done every week and get results once a month, and then be told to watch what you eat and drink? Like I don't know this already?
*Thank You God for those who are watching out for me and letting me know if and when i am doing something wrong.
To want to run around screaming your head off because nobody understands but the people at the message board IHateDialysis.com?
*Thank You God for the people and the message board at Ihatedialysis.com, life has been so much easier just knowing i am not alone.
To want to strangle people with your bare hands at their insensitivity, especially people who should know better? (Drs., nurses, techs, your spouse, children, mother)?
*Thank You God even for those who make mistakes, they are only human too.
To know deep down that if I stopped to think about all of this I would run screaming in circles and need a padded room?
*Thank You God for letting me have a clear mind so i can still be able to think straight.
I don't even have words to end this prayer.
*Amen is always a nice word to end a prayer of any kind.
Katherine
*Goofynina
Thank you for letting me rant. I had no idea it had built up to that point. You can add to it if you want to.
*Thank you Katherine for helping me remember just how good i have it. God Bless
Awesome rant, this is what this site is all about. I was wondering why their wasn't not more posts like this. Anyway that rant is close to my heart.
- Epoman
OK Epoman, May i ask what you think of it now???
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OK Epoman, May i ask what you think of it now???
I think your missing the WHOLE point of the thread: "I NEED TO RANT" She needed to "rant" not have you tell her how fortunate she is. ::) That what this site is about giving people a voice to rant and vent. I understand what you are trying to do and it is admirable :-* but try to understand that some people on this message board have been on dialysis for DECADES and your post may be insulting to some. When you have seen and gone through some of things we have gone through you will understand more. There is a big difference to being on dialysis for a few years compared to someone who has been on 10-20+ years. ;)
- Epoman
P.S. When you quote me or anyone else make sure you use the quote tag. Copy and paste the text you want to quote the highlight the text then click the quote button
See picture below. I already fixed your post, see pics below. :)
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One word: BULLSHIT!
Katherine
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Okay Goofynina...
I felt my last post was not enough of an explanation. Thank you Epoman for your words of wisdom. It is true sometime we just need to rant.
I know we are all going through different phases of coming to grips with ESRD or what ever type of disease put us onto dialysis. I am in the "Been doing this crap so long I feel I get to rant and rave about it" stage. I also understand where Goofynina is coming from. I too had a stage where everything was great and I thanked God for everyday I was alive. Now I am just old and grumpy, I guess.
Here is my answer to your answers.
God did not give me this disease, and he certainly does not want anyone to suffer for his sake.
If the medical profession would get off their collective asses instead of trying to make a profit off of the patients, then we would not need all of this medical faldolra.
If I get one more tech who infiltrates my arm and hurts me I am going to scream! Talk to Rerun about this one.
I open my eyes and am tired in the morning and tired all day long. Where did the time go to plant roses and smell them between work and dialysis?
Healthy? Dialysis does not promote a healthy lifestyle. Just look at our food and drink choices PUUHLease!
Just ask anyone who has had a bad experience with an experienced, trained well meaning doctor. Sometimes they suck! Ask Kevno about this one.
I have to schedule everything now around dialysis; even parent conferences for work; and even time to spend with my family and friends; even doctor appointments ( and they know I am on dialysis and put appointments right during that time!).
My vacations are full of driving to dialysis, sometimes up to two hours away. Figuring out when to leave to get there, then getting there and putting up with new people trying to get to know me quickly so they can treat me. Of having to watch fluid because it is an extra day between treatments, and giving up almost a whole day to dialysis, when I am supposed to be on vacation with the family.
Give me strength! I hate the renal diet. It is boring. I can’t eat that way so I don’t even try.
The same family and friends who will rant and rave at you if you eat something you are not supposed to. Or the kids who take the banana away from you and say no. Or the special friends who prepare dinner for you of things you cannot eat. Or the special lunch for teachers that has chicken, beans, and potato salad, of which you can only eat the chicken. The same family that will not go out of its way to prepare something you can eat, so you don’t really eat anything, or you eat it anyway.
My jaw now aches from eating ice chips. I have cracked a wisdom tooth from it.
When I am starving/ craving for a big glass of something to drink, those small glasses just don’t do it for me.
Thanks a bunch for the sick stomach I get when I drink clear sodas. I just love the nauseous feeling being with me all day long. It is such fun!
God did not give me that will power. I earned every bit of it! I used up what little energy I have had to walk away from things I cannot have. I choose on a daily basis.
Well now, throwing up potato chips is sure one hell of a way for my body to choose for me!
Half the time I feel like I live in the Sahara Desert. The summer California heat does not help either, when it is 101 in the shade.
Yes, thank you for a disease that puts killer water around my heart and lungs every day of my life that can only be removed mechanically through a machine because my internal system failed!
My ability to continue working just means I am stubborn and will not give up on myself and my career. They had to keep me on. No one else wants my job.
I spent six sleepless nights in the hospital, then had an angiogram, then was sent home with thirteen medications to take and little or no follow up.
God and I don’t speak a lot these days. I have talked with his angels already and came back by my own choice. I have already had my dying day.
I know that my life touches other peoples lives through what I say and do. I try to keep my rants to myself or post them here where they may do some good.
I hate having people in the medical profession recognize me outside of their environment. I should not have to know this many people who know me because I am ill.
TTTTHHHBBBBTTTT! To all the people who think they can control me and what I do. Good Luck!
This board has taught me I am not alone. When I want to rant, I can.
I watch people who take care of me at dialysis so mistakes are not made. I should not have to watch them carefully everytime I am on dialysis. A family member should not have to fight for what is correct treatment for anyone on dialysis. We should not have to go look it up on the internet, because the medical profession should be free with their knowledge about your disease.
Who can think straight when you are on dialysis. Sometimes I just want to run screaming out of the building and that is before I even get there. Much less have the two inch nails driven into my skin and take it with a smile.
Like I already said God and I don’t speak much anymore. Besides this was a ever ending rant/prayer, so amen just does not fit here!
Katherine
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God :-\
I made a pack with so called God a long time ago, I Hate Him/Her, Him/She Hates me just as much :o
I have had long discusions about this with one of my close friends who is Born Again Christian.
I have even had two Churches praying for me. Sorry my faith went a long time ago. Seen too much, no one could let any people suffer so much. I have no interest in anything any priest/holy man has to say. I have no problems with people who have faith, that may be great for them, give them strength. I just go my own way now, and I hope people respect me for that. Not everyone needs a God/Holy person to follow.
I hate the people who come around the unit/wards, saying how lucky I am to be under the wing of god, they just go on and on, I usually just end up saying. Can you please go away. They fill your head with so much sh*t. They should not be allowed on the unit/wards unless their are asked for by a patients, then only go to that patient.
Some people say they feel sorry for me having no faith, I feel sorry for them.
Well that my rant over with for now >:(
Kevno
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The way I look at it, I have nothing to lose by believing in God. If I'm wrong, who cares, but If I'm right and there is a God and heaven and hell.........
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Well, I do believe. And I am really sorry for those who don't have faith. I can understand why you feel the way you do, but I know that there is a God who loves you, as He does me.
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Hold on there...folks... I did not say I do not believe in God. I do not believe in the many organized religions' definition of what God is or should be to mankind. I grew up and was taught God is a very vengeful God and will get you for your sins. Even though God would forgive you your sins, you would still pay for wrong doing in some way. God would judge you ultimately. Well, I have always been found wanting in this area.
As I grew up, my concept of God had to change, or I would have gone into the looney bin. One cannot live with a God who is taking out his anger on you constantly. I now believe in a God that is gentle and believes in me and my choices and abilities; and allows me to seek truth out for myself. It is the only way I can really come to acceptance of my life and this disease I live with. God did not give me this disease, somewhere I decided I wanted or needed to be challenged by it.
Katherine
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I have no problem with your faith Katherine, if you feel it helps you then that is great. I lost my faith a few years ago now. Which I have no problem with. I hope people respect me for my decision. I have never seen a light at the end of a tunnel. What I can say is I have looked down on myself when the crash team was working on me. I just say it must have been all the drugs they were pumping into me at the time to bring me around.
I now have this battle with my leg, it is up to me what I do in the end. Not much time left to make a decision.
It's seems to be all my life is, i just go from one battle to another battle. To stay alive.
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It is one battle to another, as long as we win the war.
Katherine
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poor girl Kitkatz try dialysis 6 times a week for 8 hours a crack then see what rules your life lol
while I was at the clinic I used to tell myself this was better than working for a living now I cant say that anymore
but all in all its not all bad with this new routine as I dont feel dragged out after any runs on Home Hemo
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I pretty much eat what I want to eat, but have had to begin to cut out some things. The longer I am on dialysis is seems the more foods I get sensitive to or the higher my numbers go. Never had a reaction to chocolate cake before this month. Itched like fricking crazy all night from it. Off the list for sure. Diet coke makes me itch. And spicy foods make my hands tingle all the way to my finger tips. Weird huh? I still eat spicy foods, but in moderation. I try to keep track of the itchy stuff. Geez I would hate to itch any more than I already do after dialysis. I guess the longer you are at it the stronger some things affect you.
I absolutely hate for anyone to tell me what I can and can't have. It sets up a stubborn butt in me that will not let it go! So naturally the renal diet makes me crazy!!!
Katherine
I dont know your situation, but are you able to do home hemo? Im on nocturnal and the diet is free, and I have hardly any itching anymore!
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Excellent post. How true it all is.
Stuff God though...he is totally overrated.