I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: poohkari on October 07, 2007, 12:04:51 AM
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we are over it.
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:urcrazy; more info please :thx;
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Come on Poogirl.. fill us in so our minds don't wander..we are like family here you can share the good or the ugly with us. Everyone needs a break hun... talk, we will listen.
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??? ???
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Kari - You might be surprised about the feedback from the members here. They are a great bunch of people, use them to lean on if you need to, they will not fail you. I hope you will see the true value of this site in your time of need.
Thinking of you, George
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we are over it.
Kari - what's up? ???
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Poohkari, talk to us girlfriend, vent, rant, let it out, we are here for you :grouphug;
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Well, i'm very glad I made a revision to this post. Originally it was a big vent - which felt good to get out, but wasn't appropriate. Lots of F bombs.
I guess it's safe to say that Wade and I are both pretty angry about him getting sick. If anyone's done any psychology studying you know that theres this thing called the Kubler-Ross theory. Basically, with any tragedy, people will go through a distinct set of stages - anger being one of them. So its normal.
However, and I think the only person (so far) that would even understand the way we're feel on this board is Stu. Everyone here, it seems, had some kind of illness that they knew about and knew that kidney failure would be inevitable. We had no warning, no time to get used to things (if ever you do), no time to enjoy a normal life before it changed. Wade went to the hospital and boom! on dialysis. It's great that there are young people here - because i'd think we were the only ones dealing with this. I'm sick of having people tell me about granparents on dialysis and stuff.
So, yeah, we're mad as hell. We're sick of being broke, we're sick of being social outcasts, and we're pissed off that he got sick with no warning. Thanks for all your support. We appreciate it.
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It sucks - no doubt.
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Poohkari, i used to be angry as well, i was ill but didnt realize what was wrong until i was rushed to the hospital and then BAM they put this thing in my chest and i am hooked to a machine, and there i stood for 30 days, not knowing what the f*ck was going on, in alot of pain and on pain meds, people telling me stories of things i was doing or saying when they would go visit me and i have no clue of what i did or said, it was a crazy time, but you get used to the idea. It takes time, it has been 4 years for me and i have no promise of a transplant so i am looking at doing this shit the rest of my life, but oh well, i aint gonna let it stop ME, oh hell no, i am gonna do as much as i possibly can in Lord knows how much time i have left to do it in, lol, but dammit, as long as i am happy doing it :P ;)
Also, think of all the babies and little kids that have to do this, that has never had a chance to live a normal life, to have fun and to chill with friends with a few beers, some will never be able to experience that, be grateful for the time you had and just look forward to the future, at least you have a transplant to look forward to, there is an end to this someday for you, that is promising my friend, just have a little patience and remember, life is too damn short, be happy ok. Good luck to you and Wade, and please keep us posted, as you can tell how worried we all got with your first post. WE CARE... Much hugs and prayers and lots of LOVE to you both always.... :cuddle;
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No one is going to get mad at you. You can be mad and vent. And we may not understand everything you are going through. Everyone's illnesses and experiences vary.
But we do all CARE about you and Wade. :grouphug;
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You have a total right to be mad. Yes it sucks! I found out when I was 16 I had a kidney "problem" was told not to worry if anything happened it wouldn't be until I was well into old age. Well not true, I had just turned 30, it was Christmas time and I had a head ache that would not quit. I went to my GP to get something to get rid of the headache. Three days later the Neph office was on the phone, "we need to see you and fast". Mad? I was furious, I had just got married, my kids were half grown, I had a great job, a new house and an outlook that told me it was all smooth sailing from here on out! I refused to go in until after Christmas, drank rum laced banana slush all week. Walked into the Neph office, saw all these terrible sick looking people some with these things sticking out of their necks. I was scared to death! They wanted me on dialysis right away but I put it off until the following June! Quit my job, quit my new husband, quit my kids, quit life for 2 months, couldn't get off the couch. A little depressed. Still 14 years later I'm angry, that's part of what keeps me going, unfortunately it has also become a part of my personality that I have to remind myself I really don't like and need to keep a lid on. My point is I guess, I don't believe it matters if you have warning or not it's all in the way we handle it ourselves. So really it's ok to be mad, be mad as hell, but just don't dwell on it, sooner or later you gotta kick yourselves in the ass and get on with life cause life isn't going to wait for you.
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:grouphug; :grouphug; It's ok to be mad, and it's expected. I hope you can get through it, because it's done happened and now you have no choice but to deal with it Good luck sweety. :cuddle;
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Everyone here, it seems, had some kind of illness that they knew about and knew that kidney failure would be inevitable. We had no warning, no time to get used to things (if ever you do), no time to enjoy a normal life before it changed. Wade went to the hospital and boom! on dialysis. It's great that there are young people here - because I'd think we were the only ones dealing with this. I'm sick of having people tell me about granparents on dialysis and stuff.
So, yeah, we're mad as hell. We're sick of being broke, we're sick of being social outcasts, and we're pissed off that he got sick with no warning. Thanks for all your support. We appreciate it.
Kari, I didn't have a warning. One day everything was roses (except for a headache I ignored) and the next day I had a seizure at work that almost took my life. I woke up that morning with blurred vision but I only live four blocks from work so I drove in half blind (that's how dedicated I am) and thank goodness I did or I would have had the seizure at home and died right then and there. There was no 50% function then 40 and 30 and then time for dialysis for me, it was face to face with death and waking up in the ICU with an antenna coming out of my neck! You wan to talk about being pissed the p*ck off, we should get together. I am almost a year into this deal and am just now beginning to be tested to get on the "list". I had no prior plans to continue on, that's how pissed I was. I have struggled this entire time to get to where I am today. I have been diagnosed as severely depressed. Point is that you two are NOT alone. True it seems that many others have a warning but I sometimes wonder if that is any better. I have learned to be concerned about myself rather than to base my life on the comparison of others. p*ck the money, the big house the new car all of that is nothing if you cannot find the basic goodness of life. I have been reading/studying about Buddism since before my near death experience and I encourage anyone who struggles to find happiness to do the same. It is not so much a religion as it is just a way of thinking about life. I have been able to use my reading to see things in a different light. The western world is not set up to bring happiness, it is full of greed and bad programing of what is important. Not that money isn't important but if a big screen TV is going to trouble us further (the need of cable service which I cant afford) then it is not really good for us and it seems that everyone has one and we might believe that we "need" one too....then we can't afford it and we feel of a lower class or something......NOT TRUE. Whether you believe it or not these possession are not good for you. Anyway, before I sound like a nut case I want you and Wade to know that you are not alone.
Read the speech I posted from the Dalai Lama in Central Park.
http://ihatedialysis.com/forum/index.php?topic=5109.0
Also a great read that I am in the middle of right now which I highly recommend is called SHAMBHALA - The Sacred Path of the Warrior by Chogyam Trungpa
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No warning here either. One day at work,same night in the ER then into ICU and on dilaysis. Sucks, righteously!
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We all hate that you are both going thru this. Anger and depression are all part of the deal. Many on here have had kidney failure since they were children. Nothing is fair. Our lives are forever changed--relationships, money situations, everything. I am always saying that I would gladly take all the pain and suffering if it meant a younger person could have more years. Then my kids look at me and remind me how much they want me here. They tell me I have worked so hard for them and this should be the time I am enjoying freedom. So, I think no matter what stage of life we are in----we all want to live just one more day. Hang in there--try to find joy in small things. Somedays are harder than others. Take some happiness in the fact that you two have found each other and hold on tight. And always come here. This is the only place I can go to that will understand and not judge. We are always here and we care about you and Wade. :grouphug;
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Kari, I had no warning either. I went in the hospital to have a baby and woke up 3 weeks later in ICU to find out I had a hysterectomy and my kidneys had failed. I was on dialysis for 3 weeks and didn't even know it. I was completely shocked. I was never really angry, because I know that I am very lucky to be alive.
Hang in there, things will get better :grouphug;
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my hubby had no real warning either- he got squished by heavy equipment- found cancer- had surgery and ended up on dialysis- we lost our business our life and our friends- we are broke, dependant on family, so your not alone- we have had some really down weeks-its been 1 1/2 years- we are dealing....somedays you just have to have tears for what you have lost- I guess the trick is finding a new path- we are looking for it now- but it does still suck- so your not alone and if you want to vent and let a few f-bombs fly- well go ahead. sometimes it helps to know you are not the only miserable one saying' what happened to MY LIFE!!! so your rant could help someone else too!! I think it may get better in time- other people come to terms eventually- that is what I hope we do too. hang in there :grouphug;
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Count me in on the "no warning" part. I got a colon infection that landed me in the ER where I found out my kidneys were shutting down, then two days later I came very close to dying from ungodly high blood pressure (220/140), and ended up spending three days in the ICU, and when I left I had these insanely painful tubes sticking out of my chest and I was being rolled down the hall to the acute dialysis unit every day for the next week and a half until I finally left the hospital. A week and a half before all this started, I was riding my bicycle across Indianapolis. Talk about being pissed off and depressed. We love you both, and we are ALWAYS here for you. We are all in this together, and we are all like family here. Feel free to vent and yell and cuss all you want. :grouphug; :cuddle;
Adam
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I'd just like to make the point that with all that Poohkari has been going through, she found the time to private message me a couple of days ago, to make sure I was OK as I hadn't been around here for a while - now that's a person with that something special!
:thx;.
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Hi, Carrie,
I know I have not posted much here yet, but had to reply to this. My husband Les lost kidney function with no warning, either.
And we have not ever gotten a clear explanation as to how it happened. He was fine, we were "normal" people, paying our bills,
etc - then in Feb. 06 Drs. said he needed triple by pass on heart. On April 1 he had to go on emergency Dialysis at hospital - no
bloodwork had been done on him for at least one month even tho I was constantly telling Dr. he is acting very strange, had no
energy, had severe diahrrea, etc.
The year 2006 changed our lives forever - I had a breakdown, my daughter no longer talks to us, we had to sell our home,
etc.
So, please don't feel that you are alone. This is a horrible sickness, yes, but there are many wonderful people here to "talk" to.
My prayers are with you
Anne and Les :angel;
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:grouphug; :grouphug; :grouphug; :grouphug; :cuddle; Liz
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Pooh, I hope you find time and energy to vent here. We really do care for you and Wade. We're here for you, any time! :grouphug;
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I know a little about what you have been through. I was diagnosed with GoodPasture's Disease in 2001 (I was 41), which was sudden and came from nowhere. Healthy one week, and within 3 weeks-- kidney failure. I'm functioning on 30% or less of my kidneys so I don't know what dialysis is about, like you. But I know how devastating things can be when you have to wake up to kidney disease issues. Hang in there and don't give up. You have each other and this wonderful web site. Sometimes there are setbacks, ride it out.
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:cuddle; Kari - So sorry. I know how you feel. It really sucks to see the love of your life go though this. Rob's kidney disease is due to his diabetes, so we knew that he would eventually have kidney failure, however, it came about 10 years too early.
This disease sucks, you feel helpless seeing your love go through this. You feel so tired being their caretaker/loved one. You feel like a nurse mose of the time, the housekeeper, bill keeper, cook, etc. I know! You feel like your world is slipping away and theirs nothing you can do. Plus, you see your love and you just want to take this away from them. Many nights of crying and worrying. Wondering if they will be there to grow old with you.
It does get easier though. I cried so much at the beginning. Family had no idea what we were going through, most of them still don't. Get as much knowledge as you can. Talk to as many people as you can. Talk to your friends and family, lean on them. Take a brake from it all and just do something for you.
The one thing I did and still do is don't treat Rob like he is sick. I treat him the same, we find time to joke around and relieve stress. We didn't put our life on hold, we still did/do as much as we possibly can. The important thing was Rob still went to work. This was one of the only ways he could keep his sanity.
You guys are so stressed, I know. It sucks! Get mad, hit a pillow. It's ok. But know that what he is going through is so much worse. You guys will get through this.
Big hugs! :cuddle; :grouphug;
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You have every right to be angry. I can tell it's never easy warning or not. Take care.
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I know only too well what your feeling,
I had a pre-empitve transplant when I was 22, however a medical ****-up caused me to loose that Kidney (A donation from my mother) and landed me on dialysis... a situation I wouldn't have been in for another 2-3 years. So though I can't relate to the shock of your situation I can on the other hand sympathize with being too young for dialysis... no offense to anyone over 50 but when you are the youngest person in the unit by roughly 30 years it's hard to relate to people... I did my time and leave not unlike a jail sentence - but on the flip side I found myself more and more isolated from my friends who couldn't understand the person I was didn't exist anymore.
The only person who has gotten me thru the last 5 years has been my girlfriend (soon to be wife) and now our daughter who has given me a reason to get up every morning with a smile on my face.
I wish there was some tidbit of info I could give you that would make everything seem alright, it does get better and I have accepted that it's not a situation I can change or control, sometimes it helps to compartmentalize dialysis and remember that though it's part of our lives it is not the whole thing.
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Thanks for all the support, everyone. I really appreciate it.
I'm just really angry lately. I'm mad that i'm 24 years old, and I feel like I can't go out and live my life. I'm living Wade's life. I'm working a lot more than I was before he got sick, and we've got a lot less money. We had to move out of the city and into the 'burbs, and we're so distanced from our friends that I really don't think they exist anymore. I can't remember the last time someone called us to invite us to go do something or just hang out. I'm afraid that i'm really starting to resent Wade and this whole sickness/support thing. My life has been just as messed up as his has - i've been there since the very beginning through it all. I know I will never completely understand how he feels every day. That makes me guilty. However, he has a reason not to be living a normal life - he's sick. My reason? My boyfriends sick. I'd never dream of leaving him (okay .. not going to lie, i've thought about it for about .0002 seconds and immediately vetoed it) but I feel like I need a break from all this! Agh!
I'm just so sick of having a damn pity party all the time. Also, i'm sick of sucking it up and making the best of it as well.
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Yup. Life can be a bitch sometimes. Kari, can you call someone or heck, even just take off for an hour or so and go somewhere you really like going? For me, it would be a bookstore. That kind of thing. By all means. VENT here. That's why we're here! You have a double burden, yours PLUS Wade's. Hang in there, and I so hope you find someone to vent it to, in person. Someone who understands what you're going through.
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I know that my wife went through a lot the same emotions you are going through during the first half of this year while I was in surgeries, recovery, and starting dialysis. She told me a couple of months ago how alone she felt through it all because, for the most part, I just wasn't fully there with here...I was sort of lost in my own world of fear and survival. I will tell you it's better now...it's not perfect or even back to where it once was, but it's getting better as we both adapt to the new definition of normal. She relied a lot on family, faith, friends and eventually, a counselor. We didn't know about IHD or I'm guessing she'd have been on here as well.
You can do it...keep venting...
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Carrie,
You are going thru dialysis mentally. You live with this damn stuff every day. So do I.
Even tho I am not as young as you are, believe me my life was turned upside down with
this sickness. It is a very emotionally draining thing.
Always know that it is good to be able to "tell someone" about how you feel. Your feelings
and thoughts are very important.
You have a wonderful support network here with others who are going thru the same
thing. It does seem like our friends, mine included and even family cannot begin to
understand what this desease can do to everyone it touches.
Be strong, and try to make some time just for yourself. It can really help
Anne
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Kari, I have had to find the positives, the good stuff, associated with my life that could very easily be a 24/7 pity party and it is not always easy. I'm not sure how it is different for a caregiver v.s. a patient but I think we are all in this somehow for a positive reason, you included. I don't think it is something anyone can tell you that is going to have you realize what that reason is, it is just something that you find along the way. There is much to be learned about ourselves when everything has been taken away, I know, for example, that I take nothing in this world for granted. I stand over the toilet and enjoy taking a leak, and I'm not talking about the kind of enjoyment that you feel when you've been holding back some beers waiting for half time at a football game. I appreciate the simplicity of the function, the basic ability that who would ever really consider.
You too Kari will learn many things about yourself and others as well that will make you who you are for the rest of your very young life. As difficult as this is I hope you can find a way to embrace what you are going through, take hold of it, controll it and make the best of it. You can look at it like a bad customer...right....you can bitch about the customer all you want and it just makes the time worse for you but you still have to wait in them and they aren't going anywhere so why not find something good about being stuck with them and in the end you may get surprised that they wind up leaving you a 25% tip, or better than that even, you actually found something enjoyable about their stay. It is very easy to act on negative emotion and although sometimes necessary (we all know I have done that) but much more beneficial to control that emotion and use it toward something good.
I envy Wade, not because of his condition obviously but because he has someone like yourself dedicated, by his side through it all, through ALL of the shit (and there is a whole lot of shit) and I admire you. You have what it takes Kari and if you take your time and pay attention to the rightthings you too will benefit somehow, someway from this time in your life. Again, if you look for the basic goodness of your life and focus on the positive things, embracing that you can control the outcome. I don't know why I feel compelled to say this but I do so I am........I love you guys (not the kind of love between you and Wade, oboviously, but love none the less), I think you are awesome and I have much respect for what you are to Wade. Please take care of yourself first though, if you are not feeling well you are not going to be any good for Wade. Thinking of you in a positive way, today and many other days. Take care - George
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Kari, my heart goes out to you. I'm 7 years post Goodpastures disease. My 6 mth treatment left me with 30% kidney function, which is enough for me to survive without dialysis for now. I cross my fingers every day. But regarding my husband, and how he manages. I fully expect him to to go on with his life doing what he usually does. I know it's hard for him sometimes and he is very strong, as you are. But he continues to work and goes on his bike rides, fly fishing trips, ski trips, the works. I have a 19 yr old son and 16 yr old daughter and I fully expect them to carry on with their lives too. It would be easy for me to expect pity and central attention due to my disease, but I work hard to avoid that. It has meant refraining from too much talk about how sick and weak I feel at times. But I want people around me to lead normal lives because life goes on. I gues what I'm saying is that you need to carry on with your life. You can still be there for Wade and love him as you always have, but you need to get back to your life too. Continue working and pursuing a career, continue your favorite pass-times. You can do what you want and still be an excellent partner to Wade. Yes, you can have it all. I wish you well.
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Sweetie, I know how you feel. This is a hard road to go down. I am angry at times, too. I think it is a natural reaction to a lot of the crap we have to deal with every day.
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Thanks everyone. I'm just so tired of dealing with all of this. I know Wade is too - and that's why it's been hard. He feels like hes holding me back, I feel like i'm not beign good enough, and we're both being the best we can be.
Now that he's ended up in the hospital, it's all fight mode and we amaze ourselves - we're unstoppable! :boxing;
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:2thumbsup; Hang in there baby!
Good enough is good enough - you two are doing great - keep fighting :boxing;
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It's a tough row to hoe Kari but your love will see it through. I know it sounds all good and all but I believe it. Just hang in there girl...knowledge is power. I wish sometimes we could be there in person to give a hug but a cyber hug it will be :grouphug;