I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: karen547 on September 14, 2007, 11:29:14 AM
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Today I woke up and was immediately struck with this sadness. I really truly despise dialysis and for 20 bucks I would stop treatments! I HATE HOW MY GOD DAMN FISTULA LOOKS, AND I ALSO AM SO FRIGGEN SICK OF THIS ONE GUY AT MY CLINIC WHO ALWAYSSSSSSS COMPLAINS!!! I cannot handle much else happening in my life, I am trying to keep it together but it is getting hard... My parents didn't help much either , I was wearing a tank top, and my dad said that i should stop subjecting them to my catheter????!!! LIKE I p*ckING WANT TO SEE IT EITHER?? I REALLY NEEDED TO HEAR THAT, GEE THX DAD. WELL HOW ABOUT ME NOT WANTING TO SEE HIS FAT STOMACH, HMMM??? God some days its like why do I even bother waking up?? AND PPL STARING- LIKE GOD DAMN TAKE A PICTURE ASSHOLE IT WILL LAST LONGER
GRR I SWEAR IF SOMEONE SAYS ANYTHING WRONG TO ME TONIGHT AT TREATMENT I'M GONNA PUNCH THEM IN THEIR FACES!!!
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Awww man. Sorry Karen. People are so insensitive sometimes.
:cuddle;
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:cuddle; :grouphug;
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Sympathy and understanding. :grouphug;
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:grouphug;
Hang in there!
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:cuddle;
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:grouphug; We can feel the pain you are in. Some days it is just better not to be around anyone. Come here instead!
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I cannot believe what your father told you, >:( and i am so sorry you are feeling this way, please believe me when i say it does get better, give it a little time, and as it get's better, it get's easier as well. Please come here often and rant all you need to, no body better to rant to than to those who know what your going through and how your feeling, we pretty much all have been there. I sent you a pm ;) ;) Keep in touch with us Karen, dont give up and always remember you are not alone in this battle :boxing; :boxing;
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:cuddle; I'm so sorry you're feeling this way. I know how you feel--not particularly about dialysis, but I feel this way regularly about my health. You're a better person than I am tho. I would have told my father exactly what you were thinking! Probably a bad idea... ;D
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Well...THERE! I totally understand what you are saying. How dare someone say anything if they do not know what is going on with you!
I totally understand and am sending :grouphug; your way tonight!
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:grouphug;
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It's almost unbelievable that your dad could be so cruel. Hope we can cheer you up in any way we can. Just feel free to post anything you like, we're there for you. :grouphug;
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Sometimes people are SO insensitive, and the bad thing is that they think they are doing the right thing. We have to live with that. As the others have already told you, just come here and vent and rant and rage as much as you want. We already have a horrible challenge - how dare they make it worse!! But you just hang in there. We are here with you all the way! :grouphug;
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Life sucks sometimes, doesn't it? Sometimes it feels as if it is ALL the time. I am so glad I have this family here, though. I'm glad you felt safe enough to rant, keep on!!! It DOES help!!! :grouphug;
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Even though it would be nice to yell at dad. Sometimes dads just don't know what to say. If you want to yell at someone yell at me. My belly is big from all the fluid! Things will get a little better. Hang in there.
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I know exactly how you feel. My parents were extremely supportive whie I was in the hospital, but now they act like there's nothing wrong with me. I don't know if they're in denial or what. Sometimes if I complain about anything going on with dialysis my mom will roll her eyes. My brother had his appendix out, so if I say anything about dialysis or kidneys he just says that no one cares anymore and that he's the cripple now. It makes me want to punch him in the face. I still have rough days, but over time it does seem to get a little easier to deal with everything. Just hang in there. :grouphug;
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I wonder if your parents see you NOT at hospital and living a relatively normal life (?) and sort of "forget" what's really going on because dialysis is keeping you stable... which means dialysis is doing it's job, but yeah it's difficult if the attitude changes because you're still in the same condition you have been. Hang in there.
And to Karen... *big hugs* heck I think you're brave wearing a tank top but if that's comfy for you then hey bugger it.. you do what works for YOU!!! not for anyone else... I walk down the street in shirt sleaves with my ugly fistula and "druggie look" needle holes on show.. because I want the sun on my arm and it's more comfy and if people want to think that bulge on my wrist is gross, or that I'm an obvious drug user.. so be it... I just say "totally legal, I'm afraid!" :p
I think they (your parents/family) need to adjust as much as you do to what this reality means for you... No, Toto, you're not in Kansas anymore... you're in kidney failure/dialysis land...
If I could transplant you over some ruby shoes you could click together 3 times I happily would... until then you've got all our support. *hugs*
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I know exactly how you feel. My parents were extremely supportive whie I was in the hospital, but now they act like there's nothing wrong with me. I don't know if they're in denial or what. Sometimes if I complain about anything going on with dialysis my mom will roll her eyes. My brother had his appendix out, so if I say anything about dialysis or kidneys he just says that no one cares anymore and that he's the cripple now. It makes me want to punch him in the face. I still have rough days, but over time it does seem to get a little easier to deal with everything. Just hang in there. :grouphug;
A friend asked Jenna recently "Do you think your siblings are envious of the extra attention you get because of your your illness?" WTF?? I felt so angry. Jenna's answer was "Well, I don't think they want kidney disease!"
It occured to me that parents might downplay what's going on in an attempt to "normalize" the situation, which, in a way, is denial at it's finest! I actually did ask my other kids, and although they never showed it, they each admitted that when Jenna's dad and I were so focused on her, the other's were left to fend for themselves a bit. They understand it, but were still affected by it. Families are very complex, I just really never know what to do. But it makes me sad that a family would be unsympathetic, like somehow you'll just toughen up and they won't have to deal with the reality that the problem is a lifelong one.
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I know exactly how you feel. My parents were extremely supportive whie I was in the hospital, but now they act like there's nothing wrong with me. I don't know if they're in denial or what. Sometimes if I complain about anything going on with dialysis my mom will roll her eyes. My brother had his appendix out, so if I say anything about dialysis or kidneys he just says that no one cares anymore and that he's the cripple now. It makes me want to punch him in the face. I still have rough days, but over time it does seem to get a little easier to deal with everything. Just hang in there. :grouphug;
A friend asked Jenna recently "Do you think your siblings are envious of the extra attention you get because of your your illness?" WTF?? I felt so angry. Jenna's answer was "Well, I don't think they want kidney disease!"
My brother's also felt a little envious of the attention I got when I became deathly ill at age 12 (they were 10,9 and 8). They were so young themselves and didn't understand everything that was going on even though my parents tried to explain to them everything that was happening to me when it happened. They still tried to give them an equal amount of attention but this was not always possible for the first 5 years because I spent many months at a time living in PICU, and almost died a few different times.. they tried to take turns at home and at my hospital bedside... I think overall, we all pulled through it pretty good (emotionally).
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No experience, but I'd like to comment that it is impossible to change how others react no matter who it is. Unfortunately like even when my son has an ache or a pain, i know where the vital organs are in one's body so when he tells me about the ache or pain I kind of blow it off because of his age. I care but for some reason by blowing it off, I hope he doesn't dwell on it because it is more than likely a muscle issue because of Martial art training. This thread though is a reminder of the mental damage done because by doing that I can see that he may actually think I don't care.
As for you Karen, I'm glad you feel comfortable enough to tell us. We do understand and hope you can somehow forgive your parents and move forward. Depending on your relationship with them maybe you could tell them how that makes you feel after the anger is dissipated some.
Hang in there girl... :grouphug;
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Well said Sluff... Karen well done for feeling you can share and vent with us.... in part that's what the site is for along with support and so on.... Just remember we support you because in our own way we have some idea what you're dealing with (though I look dreadful in a tank top :p )....
I hope things improve for you!
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My eldest sister takes care of her mother in-law with kidney failure for the past 15 years, so she has much knowledge and sympathy for my conditions. Thus I appreciate it very much when I rant to her about my problems. Is a good outlet for me away from my mom.
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I wake up on dialysis days full of FEAR and DREAD. I am depressed and anti depressants dont seem
to help even after months. Everyday its a fight to survive here in Florida.
What is left of my family have stopped asking me how I am doing since they know
it's always negative.
So I can imagine how you feel.
Pardon me I got the Blues right now.
Iguess we can both be Thankful that at least we're not homeless with ESRD or
Stroke victims in a coma.............yet.
Really, we've got to take time to count what blessings we do have and give thanks.
I know it aint easy.
....bd
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The good thing about depression is that it ALWAYS gets better. One day you'll wake up and things will look different. Dialysis will still be a pain but it won't matter as much. The negative comments that upset you will roll off your sleeve and the world will be good again.
I hope that day comes really soon.
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I am so sorry you are having such a rough time of it. I think we all go through times of depression, some worse than others. Honey, I am sending you positive thoughts. I will be praying for peace of mind for you. I know it is hard. Many times people just do not understand what you are going though. Just remember, you are not alone. We are all here for you. We DO understand :cuddle;
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The good thing about depression is that it ALWAYS gets better.
I can appreciate being positive but is this really true. Someone may read that and feel worse because it is not getting better for them and that may have an adverse effect making things worse. In my experience depression is like a wooden rollercoaster. A wooden rollercoaster with a rusty safety belt and an absent minded operator who has left his station. If all goes well you can free yourself of the harness should the ride ever stop.
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Wooden rollercoaster-good description of depression. Long slow hills to climb, quick plummets and all on spindly wood frame. Not much fun, but moments of rush.
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I have never really been depressed... at least not for more than a few hours or a full day....I dunno.. maybe it's b/c I have kids, and I need to be strong for them and they bring so much happiness in my life I overlook the sucky parts and focus on the good.. either way, i feel lucky not to have to go through major depression and I really feel for anyone who does.. I wish I could help and offer advice, I just dont know what to say really except look at the good and try to focus on that?
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I had some major depression at the beginning. Noone had a clue as to how I felt and I felt very alone. I have a strong faith so that's what kept me going. But....I understand how you feel. Now that I have been on dialysis for around three years my family kind of 'takes it in stride'. No longer does anyone ask how I feel like they did at first. It's like it is 'no big deal' anymore. Well, it is STILL a big deal to me and sometimes I get blue feeling like noone cares about it anymore. Once in a while it would seem nice if my family would remember how much I hate going to dialysis. How I would love to just 'forget' about going but have to keep on so I don't get sick again. Anyway.....it Does get better with time. There ARE insensitive people out there....feel sorry for them because they don't have a clue as to what you're going through. :cuddle;
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Karen. I know exactly how you feel. I absolutely feel like hell. I hate the way my arm looks. There's a big lump where the fistula is and it's black and blue and swollen. My husband doesn't understand why I don't want sex. I'm ugly and I feel sick all the time. I don't even like food. I used to love to cook and eat. I have no friends. Where I used to work, I told them I had kidney failure. I was diagnosed in 2001 and went downhill. One woman said "I don't believe you really have kidney failure. You don't look sick and you're not getting dialysis". I wish I could make her come to the center and sit next to me during the treatment. I hate everything, involving dialysis.
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It's a hard life and sometimes I feel as if I am totally alone in this world other than this site and my dialysis crew.
The past years have opened my eyes to the fact that no one really wants to know how you are doing, though they may ask. The truth is you are expected to say you are doing Great, Fantastic and that your generally not affected by the whole dialysis situation because in truth then they don't have to deal with it.
I wish I could tell you something that would change your view of the situation and leave you with a sense of well being and happiness but the truth is I haven't found it myself yet... if anyone could enlighten me I would forever be in there debt.
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Even the drs. expect u. to say great or everything is under control.
When people did not go through dialysis, they are so insensitive and clueless.
This is why I am very grateful for Epoman.
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I am predialysis but believe you me I understand. A lot of my posts may not seem serious because I'm always trying to make people laugh and try to forget there troubles even if it's for a short time. Sometimes it may not really be funny, but don't take it that I don't understand or care.
I wouldn't be here if I didn't care. So those of you that have depression, you are not alone, we all have it at varying degrees. Just be happy that we now have a place within IHD that cares and understands. And even if you don't find what I post funny, please don't be offended. I truly care for everyone here, even Rolondo believe it or not. :lol; see there I go again. :grouphug;
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Humor is what get me to forget my troubles from time to time. We all need a little laugh here and there Sluff so cont. to do what u. do here and hope u. can delay dialysis as long as possible.
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Whenever I get depressed there is always something I see or read where the person is a bit worse off than I am. Then I have to think that I should be thankful for what I have. Believe me it still sucks and I can understand the way you feel. My graft sticks out of my arm from my shoulder to my elbow. Its something that you definitely cannot hide. I even went to a wedding (halter dress)with a bandage on it because there was still blood from dialysis ozzing - I stuck out like a sore thumb. I can only hope that someone will come up with something better but I do not believe it will be in my lifetime. Keep writing when you feel depressed it may help to know that there are other like you who feel the same way.
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Humor is what get me to forget my troubles from time to time. We all need a little laugh here and there Sluff so cont. to do what u. do here and hope u. can delay dialysis as long as possible.
This is why I love this site so much. On the diabetes forum I use, they jump down your throat if you try to be funny! I stopped reading that one a few days ago because I came to hate the site so much! You guys rock! :bow; :grouphug;
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:rant; I am tired of dialysis sitting in my life everywhere. I cannot sleep without it raising its head or eat, or drink , or damn near anything! The worst part of it all is it never gives you a break! Ever! :rant;
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Making up stories about the ol' fistula always puts a smile on my face... The other day I was picking Isabelle up from daycare and one of the older kids asked me what was wrong with my arm. I looked at her very seriously and told her it was because when I was her age I didn't eat all my vegetables, however sometimes I go with the classic - when your mother tells you to look both ways before crossing the road... you should listen.
I've found that mauled by a beaver always breaks the ice with adults, especially with non canucks who for some reason think that Canada is lousy with those pesky critters... always breaking into our igloos.
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:rofl; @ Guyincognito :rofl; I love the one with the vegetables, that is classic my friend, i wish i could've seen the faces on those kids :2thumbsup;
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i hear you Karen, and i know exactly how you feel. write out everything you feel it helps. pm me anytime
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You got a lump on your arm because you didn't eat your vegetables. My naturally curly hair I had as a child went straight because I didn't like vegetables, either!
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:P vegetebles taste evil, i try to get by with v8 tho (low sodium v8 :-\)
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I used to HATE vegetables. But all of a sudden, this year, that's all I am in the mood to eat. And I'm obsessed with steamed broccoli! Yummm!
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;D i feel about broccoli the way some people feel about needles. it terrifies me. excellent that you like it tho, its really good for u :)
EDITED: Fixed ;D icon error - Sluff/ Admin
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I feel for you. People in day to day life don't really want to hear about your problems. They ask, "How are you?" and they only want to hear the stock answer, "I'm doing fine." (As you fight to hold in how you're truly feeling). If they see you alive and functioning they want to believe everything is O.K. Even close family members and loved ones can react this way after everyone gets through that initial year of dealing with your illness. Over the years I have come to the conclusion people don't intend to be shallow or callous, they just want to carry on like nothing is different because it is easier for them to deal with. They try to treat you as normally as possible, not knowing that in doing so, they may be invalidating your feelings and causing you anguish. That's why it can be important to reach out to others who are like you and that have knowledge of your illness through sites like this, or people at dialysis centers. Maybe if your lucky you can find a support group to meet with. If not, perhaps a counselor so you can have someone to meet with every once in a while and talk about what is really going on with you. I think you're very brave. You've already found ways to reach out and you are finding ways to live with your illness. I hope things get better for you soon, and all you others out there dealing with depression issues. Having dealt with depression regarding my kidney disease, I can can tell you that you will probably snap out of this funk over time. If it lasts too long, however, talk to your doctor about it and ask for referrals or maybe anti-depressants temporarily. I wish you the best.
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Don't feel so bad, everyone in my household actually treats me as a non sick person...which is all fine and dandy except they expect me to do normal thinggs I can't..because Im' sick.....the grass is always greener!! hang in there!
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My family is the same way, too. Just because i can do it, does not mean I should.
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For me the reality of if all is crashing down and I find my self crying myself to sleep most nights. Last night was really bad. Around people I'm happy and "strong". No one, not even my husband, knows I cry most nights.
Reading this thread made my jaw drop because mainly this is what I was upset about last night. No one really cares. Last Friday I had lunch with a friend and after covering all her topics such as her children, their sports, her job, people she knows, blah, blah, blah when she was taking me back to my car she asked a few questions about my hopes for a future transplant and such. However, I could tell while I was answering her questions that she wasn't listening to my answers - she was thinking about what she "should" ask next. Her responses were mainly "Mmmm Hmmm". I have friends that will ask me something about my disease or fistula or whatever and they literally don't even make it through my answere before they are are talking to someone else or have walked away! I keep telling myself to just stop and don't talk about it or bring it up. Let them come to me if they are interested. That's hard because this is what's on my mind 24-hrs a day! The fear of dialysis. The concern over transplant. Everyday I read these boards and I learn something new. Sometimes it relieves my fear and sometimes in increases my fear. I think the example given of a "rollercoaster" is right on! One you can't get off!
Oh well... I'm off to my follow-up appt with my vascular surgeon that mangled my arm. Three week post op and I'm finally seeing him. I've been rescheduled three times - most recently this morning when I arrived at his office at 10:30 a.m. only to be told he's still in surgery and I could "wait". WTF? I'm not waing and 1 1/2 hrs! I didn't bring enough cash for parking! Thankfully, she said I could come back at 11:45 a.m. "Stop the ride! I want OFF!" :grouphug; to everyone!
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Kelly, that is why this forum has become so important in my life. It helps me to know I am not alone with what I am feeling. Night time is my down fall, too. I lay there and can't stop thinking - can't turn my brain off. Too many people need too much of me and like Kitkatz said "just because I can, doesn't mean I should", but they all expect me to continue the daily routine. Friends don't get it, family can't handle it --so where does that leave me? Right here with my fellow companions who do understand! Some days will be harder than others. Holidays are emotional to begin with and then add the not knowing what the future will brings adds to the emotions. Some days I think I am really in control and then it hits me upside the head--reality--and depression creeps in. Come hear and talk to us. We care and we feel your pain :grouphug;
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Paris, that was so eloquent, and so well expressed. I just wanna say, that's why I come here. I know you guys know how I feel, whether it's physical or emotional. Unless someone has been in a situation as we have, they just don't know, they can't comprehend how overpowering it is. Our entire life is changed. Our approach to life is changed. Heck, our attitudes are change.
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Many years ago, considering my likely future as a type 1 diabetic, I was in a restaurant weighing my options, wondering whether I should commit suicide as soon as I went blind, or whether it would be better to wait until I was also on dialysis before ending it all. At the next table I then overheard some people talking about what an absolutely unendurable summer they had had, because they could not get the barnacles scraped off the bottom of their boat in time for the regatta season. I realized at that point that being sick meant I inhabited a very different world from most people, and was as different from the average human as a Martian would be.
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Yes, the dialysis world is full of fun things, isn't it? :sarcasm; Many nights I lay in bed and convince myself that if I cry, I am not going to stop, so relax and go to sleep. Whatever it is will still be there tomorrow morning. Sometimes it just all rides in on me and there it is!
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"Stop the ride! I want OFF!"
Yes please ..... stop this crazy ride, I WANT OFF TOO
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I used to HATE vegetables. But all of a sudden, this year, that's all I am in the mood to eat. And I'm obsessed with steamed broccoli! Yummm!
I like raw carrots. I think they have a much nicer flavour than when they're cooked.
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I like you, Ken. You are such a sweetie---but I hate carrots!
Here's wishing we all get through the holidays in good cheer and may depression take a vacation.
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I feel comort to share my feelings and outlooks with all of u. I am very grateful able to do so.
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I used to HATE vegetables. But all of a sudden, this year, that's all I am in the mood to eat. And I'm obsessed with steamed broccoli! Yummm!
I like raw carrots. I think they have a much nicer flavour than when they're cooked.
Sounds like the rabbits are loose!