I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: duncan reamhiar on October 28, 2013, 10:54:45 AM
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honest to cripes... what's wrong with people.... i've been sick since 1996.. diabetes... heart troubles.. hypertension... yawnnnn.. on and on... was diagnosed with kidney failure this past spring.. my #'s went bad fast.. from a stage 2 in March to stage (almost) 5.. (almost because they keep telling me i'm stage 5 but almost)... July... i have had a fistula placed in June because the Neph i had didn't bother to tell me i had an option.. just sent me in to surgery with no mapping so the fistula is NOT where they told me it would be... i go get another Neph who convinces me PD is the way to go.. so i go for THAT surgery.. had that done Sept 11th... and now am waiting for another 2 weeks to start my home training so far i've lost over 30 pounds in the past couple of months as everything i try to eat makes me feel sick... not sleeping.. not eating.. yet everyone i see comes out with HEYYYYY YOU LOOK PRETTY GOOD NOW... YOU BEEN EXERCISING OR SOMETHING?... and when i tell them what's been going on... they look at me like i'm making stories... NO MY EYES ARE NOT YELLOW.. NO I AM NOT BLOATED TO HELL.. NO MY SKIN ISN'T PASTY.. AND NO MY HAIRS NOT FALLING OUT.. BUT I'M MISERABLE... JUST BECAUSE YOU CAN'T SEE HOW MY INSIDES FEEL LIKE THEY ARE ROTTING AWAY.. DOESN'T MEAN I'M FINE... rant over.. ye wouldn't mind but it's the same people time and again.. that say the same thing over and over.. but you LOOK good.. pish on em..
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That really sucks. At least you have the fistula for back up. I got fistula and PD catheter at the same time for that reason. I think in general people are clueless about CKD/ESRD. I was until it hit me.
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I never mind it when people tell me I look good. :)
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When people tell me that, I respond with "thanks, not bad for someone on life support, huh?"
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MooseMom, in your case, you probably do as you have had a transplant :waving; :cuddle;
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If it’s a colleague or someone random that isn’t 100 % “in the know” saying “Oh you look so good!”, I don’t really mind it. I consider it a compliment.
On the other hand, when someone close to me (such as parents, boyfriend, other relatives) says the same thing with the meaning of “Oh, you look so good that I don’t think you’re sick or feeling bad today”, I find it irritating. This is usually the case. So, it is like in your case of them thinking you're "making stories". Obviously, you're not and as long as the important people realize not to say such a line, that's what matters.
Hope you're feeling better after that wee rant. :)
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MooseMom, in your case, you probably do as you have had a transplant :waving; :cuddle;
Well, it's true that the ladies at the lab, who drew my blood every damn month for the Gift of Hope boxes, did tell me I didn't "look green anymore." (Yes, that's a direct quote.)
But all of my neighbors and relatives knew my kidneys were failing, and they'd tell me I looked good. They understood that dying kidneys presented a pretty dire situation, so I think they were surprised I still appeared human.
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the nurses at dialysis have been telling me that I don't look grey anymore... I'm guessing that's a good thing..
There are people in my life that I don't talk about my health to, at least to a certain point, like my grandparents, so they might say "oh, you're looking pretty good," on a day that I'm feeling like complete crap, but I'm not going to tell them the difference because I don't want them to worry.. Now, if someone like my mom were to say it, where she knows the ins and outs of everything that goes on, I'd probably tell her what for.. *L*
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I couldn't add this to my last post, so I put it here.. *G*
Okarol posted this a while back. It seemed relevant in your situation..
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Hey ye Rikki.. saw that AFTER my rant... lol gave me a smile.. ;>)
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Hi Shaks... naaaa it's a few of the neighbors who have been living here for the past several years who already KNOW what i've been going thru... hence the frustrating aggravation
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Doctor at dialysis: " We were sure worried about you. You were on a downward trend."
"Ummm...." My reply: "I was worried about me, too."
After serious surgery and BP problems and sepsis for two months. Sigh.
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duncan...
How true!! I've lost about 40lbs (that I didn't need to loose) and I guess since I'm crack head skinny I should be an Abercrombie and Fitch model!! Except for the multiple scars of 12 inches or longer!! UGH! If I only had the energy to punch the next person that says "wow you look great working out or eating better?" And those damn cute sayings and posters on Facebook and email!! I want to find the person that writes those and puts them in some frame for A-HOLES to send to me!!! I guess it takes getting life threatening sick to "Look Good"! Irony for sure!
G.
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Geoff,
Last year, my sister got really sick (doctors don't really know why) and lost 50 pounds very rapidly (she wasn't big to begin with). She developed anoerxia because of it. So she's in the hospital and a friend says "you look great - you could be a model!" My mom wanted to throttle the friend.
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I say "compaired to What"!!
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I have many friends that I know through my children's activities. Most know that I am sick. As I see each one they always start with, "You look great!" It used to drive me crazy. I always respond with a thank you. I then let them know that I am still waiting for a kidney. Their response is always shock. I do this because I feel that I am spreading the word for the need for organ donation. I swear the general population thinks that the organs are lined up waiting for patients instead of the other way around. I feel your frustration. BTW Duncan...Your lookin' good. ;D
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hey ye YLGUY... AWA AN BILE YER HEID... lol the wife wanted to GIVE me a kidney... lol can't seem to grasp IT HAS TO MATCH.. nice thought but i won't take one form a living donor... my thought being what if somewhere down the road his/her child develops kidney trouble and needs one...?... the bosses mum keeps asking me every week if i'm all better now... and i tell her the samething every week.. i'm NEVER going to be all better.. she means well but still.. (oh she's not the one who get's my rant going btw.. )...
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hey ye Joe.. that's a good come back...
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right Geoff.. got to agree... ye just feel like saying hey :sir ken; cause you make me :puke; next one who says i look good i'd like to :Kit n Stik;.. (yep just noticed these things.. lol come in handy i guess.. )
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I never mind it when people tell me I look elegant and "still" healthy and I rather take it as a compliment
because, despite all my health troubles, I don't give up and I don't let myself go...
I take it as a compliment when other people notice my efforts, because my pre-dialysis-state can be difficult
and certainly puts a stop to many of my plans and efforts and it would be so easy sometimes to give up and "let go"...
That is why I don't mind when people tell me that I look good and "still" healthy because - like everyone else here -
I know, how very difficult it can be sometimes to remain positive, optimistic and keep "everything" together...
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Like Joe's reply. When people tell me that, I respond with "thanks, not bad for someone on life support, huh?" Have to remember that. Grumpy
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I accept that we live in a looks driven society. Actually, since I started hemo and got a chest catheter, I've gone the cliched girl route of putting turquoise and purple in my hair. (Which, I'll admit, since my hair dresser knows all of my heath issues, I got a lovely discount. Which is neither here nor there)
I DON'T want to look sick. So I figure if I get the compliment I'm succeeding with the general public. My mom mentions my looks...but in regards to my health (and my hair). My boyfriend makes it a point to tell me I'm gorgeous every day, chest catheter, abdominal/hip scars and all. I appreciate hearing that because I don't want to look as awful as I feel.
I've learned over my 29 years that how one feels and how one looks doesn't go hand-in-hand. As long as YOU know how you feel, screw what people say. If the compliments bother you from people who know you, mention that it bothers you. Explain that a day of looking good just means you succeeded in not LOOKING sick, not that you're miraculously better for a day. But, don't make them feel bad about complimenting you, because they might think they're helping.
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When someone compliments me, I take it as keeping myself in tact. I’m very vein when it comes to my looks. I do whatever is necessary to keep myself looking good. I do believe in taking vitamins so my skin can stay smooth (don’t judge me, I been doing it for 14 years) so when someone says I look good, I say, in my sexy voice”Yeah I know, thanks!” I’m just vein like that. As most of you guys already know, I don’t see myself as being sick never did that’s just me. I see myself as taking an extra step to live a close to normal life.
Now don’t get is twisted because some days I just want to give up but I remember the life I’m living and it’s not a bad one. I like feeling and looking good so I always remind myself that I want to feel the same way tomorrow and that helps me to keep pushing on. :2thumbsup;
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Just a few thoughts here...
Even though we're judged by our own kind a bit more, women with "invisible illnesses" have more options to transform their looks to look better. As some of mentioned, a new hair colour, or style or make up tricks. Men don't really have those options (and if you do throw on some glitter and make up, good for you too!) so I can understand their more "animated" reactions. And again, if they're being told they "look good" from the ill effects of an illness (the main point here...) no wonder they're flipping angry. It's one thing to look good while ill and another to be told "you look good!" due to what the illness has done to you. Totally two different reactions.
That being said, I guess we all have different levels of "looking good". Just awhile ago, when I picked up my grandfather from dialysis, the head nurse told me I looked great today! Meanwhile, my boyfriend said I looked like I crawled out of a crack in Pripyat. :waiting;
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But, don't make them feel bad about complimenting you, because they might think they're helping.
EXACTLY!!! Well said!
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Cdwbrooklyn, I've always liked your attitude! I think it's part of what keeps you looking good. :2thumbsup;
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I think it's more when our illness causes us to lose weight, a lot of people think it's a good thing and try to compliment you. I lost 13 pounds this summer with my gallbladder issues. When people say that I look good since losing that bit of weight, I have to wonder, how did I look before?
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well ye all make a good point on it.. (not taking it badly... ) maybe they think they're trying to make me feel better?.. never thought of it in that way... i've turned into a real grouch over this summer with this going on.. perhaps when i start dialysis (PD) i'll feel better and not as much the grouch...
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Thanks Moosemom, I have to stay positive. I have a lot to live for and if I start feeling negative and bad, I will not make it through the years. My strength to do Nxstage is hard but my strength to live a close to normal life is harder. Beside, I like the way I feel doing Nxstage although there are some days I wish I didn't have to do it.
Keep pushing on!!!!!!!
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Maybe that us my problem!! I'm too sexy for a kidney transplant. Oh geez humor is creeping back in... Watch out now!!
LOL. G.
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I'm glad to see you laughing Geoff, started to really worry about you. Keep your head up!!!!!! :cuddle;