I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KICKSTART on August 03, 2008, 05:35:06 AM
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I just wondered how many of you , like me are alone with this illness ? By this i mean , no partner or seeing anyone on a day to day basis. When you are not feeling so good ,how do you cope? Right now im feeling sorry for myself , i want to stay in bed (but cant) I want someone to make me a nice dinner ( i dont know what i want and cant be bothered to make anything) I want someone to make me a nice cup of tea , instead of having to drag myself into the kitchen. Much as i would never have my rat of an ex husband back , i want to be tucked up in bed , with someone downstairs taking care of everything ! How do others feel and cope on their down days ?
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Oh man can I relate (see my post on being stressed big time). The hardest part of living alone is not having anyone else around to make the chicken soup! Luckily I have a large kidney community that I am a part of, plus friends I can call. Of course, now there's IHD where I can come and rant and rave and get the warm fuzzies I need. I'm sending you a whole bunch of warm fuzzies to take care of you until you feel better, plus a whole lotta hugs!
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I am basically alone..sometimes I'm ok with it as I can just stay in bed if I have a down day which is more often than not. My other does call several times a day and if I don't answer he just threatens to call the police to come check me so can't do that and he doesn't like to hear that I'm not feeling good because he is so far away so I just "suck it up" sometimes. Problem is when he is here for a visit I do too much because he wants to take me out and do stuff "which I did use to like to do"...he just doesn't seem to get it that I really don't feel like doing anything much at all...and he doesn't cook so forget the chicken soup. So I feel like I live in a revolving door...flat out tired in bed, then running for 3 weeks, then flat in bed for weeks...not good but how to quit this cycle??? My kids on the other hand are good with all this...they let me be when I need to rest but push me when they think ok time to move so thank God for kids. Huge Thank God for IHD...NO ONE ELSE KNOWS like IHD does how we feell and that is why we are here. :2thumbsup;
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I like the fact that no one tells me what to do. I don't have someone nagging me to go to ER when there is no way in hell I want to go. I don't have anyone making me hang in there when things get so bad that I give this whole thing up. I like the fact that I'm not a burden on anyone. I do feel bad that I may leave my dog behind and no one will love her as much as I do or will know she likes a bedtime snack. I'd rather be alone than have kids or a spouse making me feel sad or guilty for being sick.
I have my faith. I know where I'm going, and it is better than here.
I have my sister who knows my wishes. :cuddle;
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i live with my daughter, however april has a life and is seldom home so i ofter feel like i'm living alone. i am grateful that it isn't really being alone, i get the help i need and the privacy too.
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I totally get where you're coming from. I live by myself and sometime just wish somebody was here to help with the everyday things like laundry, cooking, cleaning, dishes, etc... although I do give myself a break and only force myself to do two or three small chores at a time. The cooking for yourself thing is hard whether you have kidney disease or not, why fire up the stove to cook a meal when you're only cooking for one.
Then there is my social life or lack thereof. I used to go out 3-4 times a week. However, due to 1) Not drinking alcohol anymore (and not being a huge fan of sitting around and watching everyone else get drunk) 2) Not being able to eat at many outside restaurants do to dietary restrictions 3) Just not feeling like leaving the house. I hardly go hang out with my friends anymore...which only furthers that feeling of being alone. That, along with nobody really understanding what you are going through other than you...can get to be depressing.
But you have to fight through it. Some days, weeks, and months are better than others...and forcing yourself to do things when you really don't feel like it sometimes is a must.
At least we have each other to commiserate with :D
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I hear you on "no one understanding what you are going through." Today I'm swollen tighter than a tic and I tell my friend that. So, he invites me over for pizza. OMG!!!
:Kit n Stik;
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Rerun how is your job at Sears?
I have my husband here and sometimes he drives me crazy---- he does not understand how I feel or he tries to pretend things are fine----
I have one daughter at home and a son who comes from college and a daughter who lives about 20 minutes away with her husband and almost 2 children.... but I still feel alone and isolated except for IHD--- this is a lonely disease--- people expect you to get medicine and then you are well-- When will your kidney function return----- Duh- never--- I have felt sick all weekend with zero energy and my hus thinks I should change kidney doctors(?) I had surgery in May and I should be all better---- plus we are going out of town for our anniversary and he expects --- well you know, I will have to fake my way thru most of that----- I'd just as soon stay home----- I am tired and tired of being tired..... this is not fun----- it is not like you have a baby and everything goes back to normal -- but my husband does do a lot for me and he is understanding about some things but not-- well you know...... he is not mean just :P :rofl;
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Sometimes I think living alone actually helps me. It keeps me active and I know that I have to do the chores or they won't get done.
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Twirl, Sears is not the best job, but I rather do that than.....well, you know! ;D
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I can see benefits to both :rofl; not really :rofl; hope you are doing just fine :clap; like to read your posts :clap;
EDITED:Fixed smiley tag errors-kitkatz,moderator
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I am alone although I moved back with my parents, I do not get along with my dad very much. He never understoodd what was going on with me when I just had diabetes either. I don't tell my parents anything going n with my health unless it is the last minute. Hospital stays are almost a vacation for me to get away from them arguing between each other. I rely on myself and prefer it that way. I liked living on my own, dating was a pain in the butt, but the one thing that keeps me sne is comedy, and bullheadedness to kep pushing to prove people I can do things they think I can't or should not do. In a sense it is mentallity and that darn over used qoute "positive thinking". More like survival instinct to me. Maybe a pet would be better, that helps too.
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I'm alone. Single, never been married, no kids (do the cats & dogs count?), my family lives in MN and I'm in OR. I'm thankful I usually feel pretty good (still pre-ESRD). I *think* I have local friends who would drop everything if I was in trouble, but I hope I never need to put them to that test. I do worry sometimes, like when prednisone caused my blood sugar level to hit 1500 (I'm not normally diabetic), or when I had a DVT. I wonder at those times how long it would take for someone to realize they hadn't heard from me for several days. It makes me glad to have a full-time job and I make sure that if I don't show up on time every day, I call to let someone know why, so if someday I don't call or show up, maybe someone will think to worry.
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No wife or girlfriend, my family is in Oregon and Arizona and my best friend is in the South Bay of San Francisco.
I usually don't tell them how awful I'm feeling because no one every wants to hear that. At work, when people ask how you're feeling and you start to tell them the truth, you can just see their eyes glaze over and a big thought balloon over their head with, "Oh my God, why did I ask that?"
I have two roommates, but that's all they are, a means to save rent.
I've been dealing with ESRD since I was ten years old, so I'm used to surviving alone.
Sometimes I'm glad, because I don't want to burden anyone with my medical issues.
It would be nice to have someone to curl up with from time to time. Holding someone close sometimes has amazing healing powers.
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Yes dear Deanne, cats and dogs DO count... and let me tell you why.
I live alone - humanwise - but I have my little lady who spends as much time as she can with me.. and for that I am forever greatful. Here is someone who sits with me no matter what... listens to me ramble on, or whinge about wanting to drink or eat something I can't... and doesn't mind if I want to sleep in and stay in bed all day.. because that's heaven for her :)
Does it get lonely? Of course it does!! However I know I will come home and there she will be waiting for me by the door with a big loud meow and headbutts that says she's really happy to see me again after a long day (of sleeping, no doubt! :) ).
Sometimes I'd prefer to have a human partner - because yes they can talk back and share with me (and other obvious benefits.... ;) ) but by the same token they can be just as much trouble with emotional games, doing things to hurt/upset you, lack of understanding or support and all the rest that we all know about. Relationships are rarely, in my experience anyway, all happy sailing.
My cat however gives me unconditional love, loyalty and support... and when I go to bed at night and lie in the dark thinking my thoughts... I am always smiling when she jumps up on the bed, walks up it and comes and curls up by my side... because that's her decision to do that every single night and I know it is her way of showing me her love and support (and to grab my body heat.... ;) )
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I dunno RichardMel..... I agree with most of what you say about cats & dogs, but does Sammy (cat) sleep on my face out of affection or does he figure if he suffocates me, he'll inherit the can opener? :rofl;
Sometimes I wish I had a human companion and help-mate. What Kickstart says is so true! It would be nice to have someone to push the vacuum once in a while, pull a couple of weeds, walk the dogs when I'm too tired after work. Mostly, I figure I'm lucky to be single. I feel like I'm a stronger person for it in many ways. Because I've never had help, I've always found ways to cope on my own. I've gained a lot of confidence in myself because of it and it's served me well in all areas of life.
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I dunno RichardMel..... I agree with most of what you say about cats & dogs, but does Sammy (cat) sleep on my face out of affection or does he figure if he suffocates me, he'll inherit the can opener? :rofl;
lol that's funny.... no remember cats have staff so he would still expect his human slave to open the food and dish it up for him!!
I don't know why he would sleep on your face... but I'm sure it's out of affection :)
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Wow i never expected so many replies ! While like most of you i like not having to answer to anyone or having to put on a brave face , i just wish from time to time someone would take the strain of day to day things. Im the sort of person that cant sit down if i know something needs doing no matter how weary i feel. I just cant leave those dishes in the sink or dog hairs on the floor.
Yes i have my dogs , yes some days they drive me crazy ,like the trail of muddy paw prints all over a freshly mopped floor ! but i wouldnt trade them for anything or anyone !
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Kickstart despite what you say you have always come accross to me as a real fighter and I admire you greatly for that. The fact that you drive yourself to get things done that need doing indicates to me that you do not have depressive tendencies even though some time you feel sad because you are living alone. Although it appears you have no choice but to be independant I know you have the strength and the will to tackle it successfully.
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Thanks Ken , you know what they say ..What doesnt kill us , makes us stronger !
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KICKSTART,
I am not sure we can ever be satisfied. What I want is someone I can switch on and off as it suits me. Sometimes I enjoy the peace and quiet when I am alone. Other times, it can drive you up a wall and get very lonely. I am developing a relationship and I have recently developed this kidney issue. Now I am somewhat hesitant to pursue this. She's a great girl and she knows what is going on but......
Mark
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I am grateful that I do not have to face this disease alone, my husband is very supportive and loving. However, I feel extremely guilty for burdening him with this disease, and how much it has affected and limited his life. He is not diseased, but he is forced to life his life with all my barriers. There are days when I just want to go home, put on my pajamas, and fade into the sofa.... but there are people who are counting on me to fix their dinner, run them around, listen to them, solve their problems, etc. Yes, they do inspire me to keep going, but they also keep me going even when I need to stop.
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Me and my faith.
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talon999 I know exactly what you mean , its not so much loneliness as just an extra pair of hands , to take over on the bad days. Its ok to leave things on those days because we have no one to answer too, but i just see it as twice as much work to be done on a good day !
I hope your relationship goes well , my charming husband decide to leave me when i started dialysis , he thought nothing should change , i shouldnt get tired or have off days , so in that way im glad im single .I havent missed him one little bit !
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So when you divorced him, can you get more for divorcing due to stupidity? Geez, what a loyal loving guy. Must not have studied or paid attention to the marriage vows.
I can understand about the cleaning. In my of days I hate it when the people I live with make a mess in the kitchen and don't wash the dishes. They just let them pile up. They did this while I was in th hospital to and it wasn't something I wanted to come home too. >:( I wanted to go back when I saw that. I just need my own place again and move away from parents again. >:(
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That's why I grill out most of the time...no dishes to fool with.
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and Flip drink vodka right out of the bottle and save on washing glasses
my Aggie son brought home his dirty dishes to run in our dishwasher to save money on the electric bill----- it is his turn to pay---they run the air on 60 degrees---- ??? go figure
cats and dogs do count and IHD counts and friends count
I have a twin who will not give me a kidney ----- she'll do anything else so I don't know----- I have a couple of friends who would like to give me a kidney
my"aunt" I loved dearly was really no kin to me at all and my children think she is their grandmother
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Kick, my husband stuck around after my transplant for about 8 years. But, the prednisone puffed me up so that I wasn't the perky little blond that he married. When he joined the Volunteer Ambulance I was stupid enough to think he did it for me. To learn more about medical things. Then he started working out and dressing up and wearing Cologne for the meetings. Then I noticed this lady who wouldn't take her eyes off him whenever we were around her/them (she had a family). One day he come home and told me "What you have been thinking about Linda and me was true". The rest is a raunchy history that should only be told when drinking Long Island Ice Teas!
:Kit n Stik;
To keep on topic, I'd rather be alone.
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I have lived with my boyfriend for about 5 years now. He is pretty much in denial about my health issues. Although when I do get visibly sick he is very good about taking care of me and the house while I am down. Otherwise I usually take care of the cleaning, laundry and food. I am a caretaker type. I go to 99.9% of all my doctor appointments alone. The only time I take someone with me is when/if they are going to do a procedure where they have to put me out. And I usually call on a friend for that. So…there is really no one I can honestly talk to about my kidney problems except you guys. :waving;
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Brightsky69, I relate to what you wrote. I have a good husband, but I have always been the caregiver. I take care of everything and everybody. I do all the housework, cooking (hot meals everyday), bills, shopping, etc. I go to all my appointments alone,except to the transplant center for tests. And have done that alone when husband has to work. Right now I am tearing up the ceramic tile in our forer and stripping the hard wood floor under it. I do all the painting and just finished the kitchen and dining room. I like to be productive, but now I need to do it on my terms, on the days I am able to do it. It is hard for family to realize how much has changed. I hide it most of the time when they are around. We were at a park for the 4th and after the fireworks, we got all our things and headed back to the cars. I was carring two camp chairs and a large bag. It was 90 degrees, we had been in the heat all day, and I just couldn't keep up. Everyone got to the cars long before I did. And they all stood there watching me struggle as I walked up to them! They are all good people, but I have always done it, so they didn't see a problem. And they would be hurt if I said " are you kidding me---is no one going to help me?" They think I am strong. :Kit n Stik; Good thread Kickstart!
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I am the Wife. He is the one taking Dialyasis. He is gone to Dialysis, Three times a Week, Four Hours a Day and then comes Home and Sleeps for Four Hours.
On the Days, he feels good, it is hard for him to Walk a short distance. We are Retired and Moved to our Dream spot, thinking we could visit, Children and
Grandchildren, whenever we wanted and then He got Sick. Our Plans, went down the Pooper. I'm not Complaining for Myself, I'm thinking, how very Hard, it must
be to do this all alone. God Bless you all.
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KICKSTART,
I am not sure we can ever be satisfied. What I want is someone I can switch on and off as it suits me. Sometimes I enjoy the peace and quiet when I am alone. Other times, it can drive you up a wall and get very lonely. I am developing a relationship and I have recently developed this kidney issue. Now I am somewhat hesitant to pursue this. She's a great girl and she knows what is going on but......
Mark
Good point. Basically I would love a girlfriend that would be there the 5 or 6 hours a week when I need one...and then would love to be left alone the remainder of the time. I would guess many on dialysis kind of develop this sort of "me first" attitude as a survival tool... I've dated 3 separate girls since I started dialysis 4 years ago and they all ended for similar reasons...not enough time for them...when you work 40 hours a week, lose 12 hours a week or so in clinic, and just want to nap or stay more often than not...that doesn't leave you with much time to spend with a significant other.
As much as I secretly want to place them blame on them for being selfish...I suppose it's equally selfish of me to expect someone to completely alter their life to cater to my wants and needs.
*But I can dream can't I :shy;
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Donna is home only about every other weekend and sometimes she treats me like an invalid. I think she believes all the bs about not lifting with the fistula arm. She wants to carry in all the groceries (I still get to do the cooking) and asks me if I want a scooter chair at Wal-Mart (I'll be damned if I ever do that). I don't consider myself handicapped (even though I have the permit for good parking spots).
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I don't live on my own but sometimes I wish I did. While it is great to have the extra hands around, you do get sick of having to make excuses when you just want to lie down and have a rest. I am with RichardMel.....sometimes I think - no, I know - my dogs are more understanding than the humans in my house. My older dog brings me my slippers when she wants to have a sleep and brings me my runners when she wants to go for a walk. When I am not feeling well she seems to know and never brings me the runners - just the slippers. It is very cute and better than "Don't you think you would feel better if you just got up and did something."
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Your allowed to carry in Groceries, with a Fistual Arm? My Husband told me, he was not allowed to even pick up his Socks off the Floor. Hmmmmm?
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maybe I need to start wearing socks
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Your allowed to carry in Groceries, with a Fistual Arm? My Husband told me, he was not allowed to even pick up his Socks off the Floor. Hmmmmm?
Ught Ohh, busted!
Only thing I was told was to watch out for heavy lifting. But I could do alot with my arm, but with a graft in the same arm, it gets weak quick. It feels cold, gets a tingling sensation, and becomes very weak if I am holding something straight up.
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If people are around I tell them I'm not supposed to lift too much with my arm, but when I'm alone and need something done I do it. I got all my computer equipment upstairs!!
:shy;
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My kids know me all too well...they walk in and ask who should get the butt whoopin...I just tell them that their butt whooper is broken. I attempt to do as much as I can for myself...lifting and all. Thats another story...TDI...too Da...Independant.
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my vascular surgeon said anything up to 40 lbs. was basically okay
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My Motto: I'd rather be alone than wish I was! :flower;
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My Motto: I'd rather be alone than wish I was! :flower;
OK that one is making me think to hard ??? :urcrazy; :o
Gonna have to :Kit n Stik; into my head to understand meaning.
I hope it is the sleeping pill that is kicking in and not a brain cell dying off.
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I am grateful that I do not have to face this disease alone, my husband is very supportive and loving. However, I feel extremely guilty for burdening him with this disease, and how much it has affected and limited his life. He is not diseased, but he is forced to life his life with all my barriers. There are days when I just want to go home, put on my pajamas, and fade into the sofa.... but there are people who are counting on me to fix their dinner, run them around, listen to them, solve their problems, etc. Yes, they do inspire me to keep going, but they also keep me going even when I need to stop.
I can relate to everything you just wrote cherpep!
I was diagnosed with scleroderma prior to being married in 1986. In 1987, just 1 year into marriage, I suffered seizures from hypertension, and my kidneys were affected at that time. Over the past 21 years, my kidneys have been on their decline due to the scleroderma, until my transplant 6 weeks, ago. So, basically, my hubby has had to deal with my health issues and its downward spiral our entire married life! Both of our teens have known nothing else, but having a mom w/ health issues.
As I'm only 6 weeks out from surgery, I'm still in recuperation, and dealing w/ very low energy, at the moment(and still have the scleroderma and hypertension - tho both are under control - knock on wood!).
I know the future will, hopefully, bode better times (fingers crossed!).
To everyone dealing with your individual journeys, alone, you have my utmost respect and admiration for the courage and perserverance I know you must muster every day! Its not an easy road . . . I send you ALL my hugs, lots of caring thoughts, and MORE HUGS!!! :grouphug;
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Yeah to all who have someone living with them, supporting them and helping care for them. Today I would like that but I think it's the major nxstage stress today and no-one to get a hug from. I'm going to just breathe for awhile.
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:cuddle; Here's a cyberhug, G-Ma. The NxStage can be very stressful. There are days, when I am so stressed out that I'm not sure I can insert the needles because my hands are shaking so much. Take a deep breath. You can do it. If not, well that's one of the benefits of short almost-daily dialysis. There's always tomorrow.
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cherpep...please please fill me in.....what is stressful about nxstage....I have listened to all the good things...tell me the stress part please...I haven't even started it yet and I'm flying..and not in a good way.
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I am with RichardMel.....
OMG Lucinda!!! Careful!!! People already think we're having an affair or something!!!! Besides I am not sure how my cat would deal with your dogs! :) :) :)
LOL (sweet story about the slippers and runners though - they are VERY perceptive creatures animals... and very special companions).
Just on Fistula arms.... while I've been told to not lift "heavy" items with it and to not wear heavy/tight clothes over it I don't just stop using it. I do use it to lift things from time to time - not HEAVY things but if I'm carrying bags I'll put one on my left arm. I don't overdo it though.. so far, knock on wood, no problems :)
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The stress comes from many angles. Whatever happened during the day at work or home could affect my stress level. Regarding the NxStage, the most stressful part is getting a good poke. I'm always nervous about that. I used to have a fistula - one day it just stopped working. I took great care of it, but the surgeon said that the walls of my veins were just not strong enough to handle that pressure. What ended up happening was that it got so big that the blood clotted around the perimiter, but the blood flowed through the middle. I just couldn't get to it. So, even though I could feel the thrill, I couldn't use it any longer for dialysis. After a couple of attempts at flushing it, I ended up with emergency surgery with a new graft and a cathetar. I was extremely weak from going days without dialysis and suddenly, I was off work for a couple of weeks and not able to take showers again. I'm now using the graft, but poking it is more difficult than the fistula. I'm getting better at it every day, but some days it just isn't right and the pressures are all over the board, and the treatment is rough. Other days, I'm exhausted - from work & home & not getting enough sleep - that I just don't think I can do it. On those days, I ALMOST miss the clinic where you can just go in and let someone else handle the worries. I said almost, though. On those days, I take a couple of deep breaths, and work my way through the stress. If it doesn't go well, I just comfort myself with that there is always tomorrow. Once I get a good poke and the pressures are good. Well, then, it's an easy road after that.
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They are all good people, but I have always done it, so they didn't see a problem. And they would be hurt if I said " are you kidding me---is no one going to help me?" They think I am strong. :Kit n Stik; Good thread Kickstart!
Paris,
I hear you!! My family doesn't think there is anything serious going on with me. Even though I am now on the transplant list and my transplant is failing. They see me going to work everyday and going about my business as usual. I guess they don't see me as "sick". They too think I can handle anything...sick or not.
QUOTE ERROR fixed - Bajanne, Moderator
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Kickstart,
Write me anytime. I am always here to listen. I am alone at night my hubby works 2nd. So I get on here alot.
Lori/Indiana
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Hey guys.....on the fistula thing.....I was told not to wear jewellery or tight clothes on my arm and not put anything heavy against it. As for lifting anything heavy...I was told that was fine and I do it all the time. My first three grafts stopped working after a month because they used some new product that wasn't fully tested that was supposed to be terrific. On the fourth go they put in the tried and tested and I haven't had a problem with it since. I went to have my bloods done yesterday and the pathologist told me that she goes to a gym and there are two men in their 70's there both on dialysis and both love doing weights. One of them does a hundred arm rolls with one of the heaviest weights and he swears that keeps his fistula strong. That might be extreme but I don't think you need to be picking up your husband's socks Mizar!
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Hey guys.....on the fistula thing.....I was told not to wear jewellery or tight clothes on my arm and not put anything heavy against it. As for lifting anything heavy...I was told that was fine and I do it all the time. My first three grafts stopped working after a month because they used some new product that wasn't fully tested that was supposed to be terrific. On the fourth go they put in the tried and tested and I haven't had a problem with it since. I went to have my bloods done yesterday and the pathologist told me that she goes to a gym and there are two men in their 70's there both on dialysis and both love doing weights. One of them does a hundred arm rolls with one of the heaviest weights and he swears that keeps his fistula strong. That might be extreme but I don't think you need to be picking up your husband's socks Mizar!
I am picturing those two men lifting triangular weights for some reason. :rofl;
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At the center I was told not to lift, wear anything tight, or sleep on it. My vascular surgeon said no restrictions,just use my own judgement. It's like you can wear a watch or bracelet...just don't make a tourniquet out of it.
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All these years I haven't worn my watch on my left because I was told not to, but I have a loose fitting Medic Alert bracelet. Something for me to think about and would have to retrain myself to look at my left arm for time.
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Back to the topic..
In another post I made, it made me realize that I do have a fear of being alone. If I loose sight in my one remaining eye, who do I turn too, who can I trust. I do not have a significant other and that's when one thinks crap, I am alone.
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I had to learn to wear my watch on my right arm because I was told no way a watch on fistula arm (plus my fistula is on my wrist so a watch just would be uncomfortable there anyway let alone doing harm to the fistula!)....
I couldn't sleep on the darn thing even if I wanted to... the pulsing and throbbing and... you all know what I mean (those with fistulas anyway!) drives me totally nuts!.
back on the home alone topic... Seems to me from reading the general consensus that we'd all like some help around the house as much as the support of a loved one/partner... but sometimes if we need to droop it's also good to have your own space and not feel like you have to explain to others that you are just flat out tired from dialysis (or whatever) and need to rest quietly.
It's difficult when people see you going about work and life... because we all want to LIVE LIFE as normally as possible... that it's hard for them to understand just what we're going through. I try not to resent that though because it's not really their fault.. and I'm just glad I *can* get out there and live a pretty normal life apart from dialysis and the other associated stuff.
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^ I can really relate to your last paragraph RichardMEL. People have said to me throughout the years, "But, you don't look sick" . . .
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I now wear my "Live Love Dance" purple bracelet on my fistula arm all the time. Thanks, Okarol or whoever put them in the goodie bag.
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It's difficult when people see you going about work and life... because we all want to LIVE LIFE as normally as possible... that it's hard for them to understand just what we're going through. I try not to resent that though because it's not really their fault.. and I'm just glad I *can* get out there and live a pretty normal life apart from dialysis and the other associated stuff.
I don't know if wiser words have ever been spoken. This is sooooooo true!! Of course, this is what we want, right? This is why we push ourselves so hard, even when we don't want to - because we don't want to look sick, because we want to appear 'normal'. How dare they not know what we are going through! It's not like we are trying to hide it (sarcasm).
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I don't know about wanting to "appear" normal... for me it's about LIVING as much as I can and as normally as I can with the constraints opposed on me by ESRD. In a way I don't really care about what people see... the needle marks, fistula etc... I'm reasonably open about my situation if people ask, but I don't want to draw attention to it either. For example people at work know what the deal is - I mean how could they not when I'm off to dialysis sessions every week - and sometimes they ask questions.. specially if we're at lunch or something... but I don't want to just go around talking about what I can or cannot do. I guess I mean I'm not going to draw attention to it, but I'm not going to shy away from it or pretend it doesn't exist. It's part of my life but I don't want to let it control my life. I want to stay positive and focus on my goals for the future and what I can do when things hopefully improve for me (as in a transplant) and then I can do all the things I've been thinking about for the last 2+ years :)
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I don't know about wanting to "appear" normal... for me it's about LIVING as much as I can and as normally as I can with the constraints opposed on me by ESRD. In a way I don't really care about what people see... the needle marks, fistula etc... I'm reasonably open about my situation if people ask, but I don't want to draw attention to it either. For example people at work know what the deal is - I mean how could they not when I'm off to dialysis sessions every week - and sometimes they ask questions.. specially if we're at lunch or something... but I don't want to just go around talking about what I can or cannot do. I guess I mean I'm not going to draw attention to it, but I'm not going to shy away from it or pretend it doesn't exist. It's part of my life but I don't want to let it control my life. I want to stay positive and focus on my goals for the future and what I can do when things hopefully improve for me (as in a transplant) and then I can do all the things I've been thinking about for the last 2+ years :)
Great Outlook RichardMEL,
I agree with what you are saying. I work also and everyone in the office (if not the whole plant) knows that I am on Dialysis. I get some questions and I openly answer them to the best of my ability. I still find myself dwelling on the "issue" but I am getting better about looking to the future and thinking about other things. They have my a$$ busy now chasing paperwork to get on the "lists". I have appointments, education seminars, meetings with SS etc. Plus a fulltime job.
Give me a break.
Mark
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I too am alone. I had my mother and then she died 4 years ago and while she had 4 sisters they do not talk to me so i have no family support. I have 2 friends one who is willing to take care of my cats when i'm in the hosptial and not much else and another who does more for me but has a family of her own to take care of. I am literaly 100% alone. I go to my doctor's appts alone. AT times i have to admit, i like being alone so i don't have to worry about another person but then there are times when i could use the help of a second pair of hands. This past weekend was a good weekend in terms that igot ALL my laundry washed and all my dishes washed. They were piling up all over my apartment. It takes alot out of me to just cook dinner and there are times that i would really like someone to cook for me or run to DD and get me a tea. i have my cats and they are my babies. I'll be h onest and say that having relationships whether they are friends or more are hard. it takes alot of energy to start and maintain a relationship and people who aren't sick don't understand. At times I am terrified that i'm alone, who will take care of my cats if something happens to me. What will i do if i suddenly get the call that a kidney came in? Who would take me in, who will help me when i get home after the surgery? I do have a million questions like that but at the same time i do like being alone (i am totally used to it). we all have our moments good and bad. I am grateful to be alive and kicking - even if it isn't all the time i'm kicking.
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My motto has been, I'm not gonna let dialysis take over my life, I'm just fitting it into my life.
I do try to appear normal, because I don't like people feeling sorry for me. I don't try and hide the fact that I have dialysis, but I do try to hide the exhaustion, especially at work. In our state of economy, I cannot give the impression that I cannot do my job as well as the next guy. I cannot let it affect my work. At my job, a big impression is given in the amount of hours worked. I have to work equal hours, which means making up a lot of time from doctor's appointments. I cannot appear weak and exhausted.
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My motto has been, I'm not gonna let dialysis take over my life, I'm just fitting it into my life.
I do try to appear normal, because I don't like people feeling sorry for me. I don't try and hide the fact that I have dialysis, but I do try to hide the exhaustion, especially at work. In our state of economy, I cannot give the impression that I cannot do my job as well as the next guy. I cannot let it affect my work. At my job, a big impression is given in the amount of hours worked. I have to work equal hours, which means making up a lot of time from doctor's appointments. I cannot appear weak and exhausted.
You are one tough cookie, Cherpep! (of course I'd expect no less from a RedWings fan! LOL)
Keep up the good fight!
My motto has always been: "I am more than my disease(s)"
(which is much along the lines of your motto's sentiments)
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Think my motto for when people ask how do I feel or how am I doing would be to say "Ask Me tomorrow" or "I don't know yet, ask me latter" That way I will not have to answer and have people ::) if I do say something.
As for the kidney transplant, the hospital will put you up in a room after discharge nearby so you can come to the appointments or have trouble. There is usually a nurse on standby, and then a home health nurse will come to your home. Just tell them your situation and they should be able to accommodate. Also hate it when you are asked if you are here by yourself and feel like you are looked at differently because you are. Some test tell you that you have to have a person with you to take you home after the test. I end up lying by saying they are downstairs, or make a phoney call to make it look like I am calling my ride and I just walk out, hop on the train and go home.
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I didn't used to get lonely until after being through two long-term relationships. It's rare enough that I encounter a woman I find interesting as I have one of those introverted bookish personalities... I have severe doubts that there's anyone this won't eventually overwhelm and tend to wish I had never loved and lost so I wouldn't feel that void.