I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: geoffcamp on March 30, 2013, 04:53:39 AM
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With all the things going on in my life, the biggest having CKF and those dreaded dialysis days I find my mind wondering and wishing for so may things I've missed out on and things I want but can not seem to have. Last few weeks I've been trying to work out some kind of work to help my dismal finances. I get overwhelmed and find myself dreaming of a secluded beach with great waves and the want /need to just go away. Put all the struggles and work behind me and just buy a ticket go away and enjoy my last few weeks in the sun. Since I was laid off from my last job in 2009 I just can't seem to want to get motivated. I am 99% sure I will never get a kidney transplant (antibodies) and I'm having a very hard time finding reasons to fight all of this. I'm single never had the blessing of a family or a true partner in life. My age is really starting to affect how I feel. I do exercise but even that is just a chore now. My parents have been great helping me out financially but I feel more like a burden than a son. I can't see why I should prolong what inevitably is going to happen. I want to go out on my terms and my way. I'm thinking of looking into alternative care to get me thru a couple of weeks of joy then letting all the worries and work just go away. I feel like I'm just doing what everyone else wants me to do and expects from me. My life has been at a standstill since I was laid off from work. I have no direction or anyone special to make life happy. The only reason I've fought for so long is my mother. She is the only person that would be truly hurt if I threw up my hands and said F all this I'm ready to pass on peacefully. Bbt she has my sister and her perfect grand children, something I can never give her. So I'm sure she would find a way to go on hopefully understanding it's ultimately my choice. In a million years I never ever thought I was a quitter or that things would turn out this way. This week I'm putting together my will and burial instructions along with a DNR. I think I'm ready. Because I've just lost my will and hope to go on this way any longer. My body has been going down hill pretty fast over the last 5 years. I never miss treatments but I find myself more and more not wanting to go. Feeling like a burden on my family and society is in my mind everyday. My hobbies and things I used to find fun doing have been non exsistant for awhile now. I feel like I've missed out on all the great things in life just to keep me alive. I don't want to feel that way anymore. I know there are so many of you that have had it worse than me and even children. But as a grown man alone I'm just not feeling like I'm fighting for any return to a semi normal life. So I'm putting together y pan and find someway to enjoy what's left of my life without dialysis. I guess I just want way too much out of life and that's just a dream. I really wish for my family it was as easy as just pulling the plug, that would be so much easier. I've been here before and had these thoughts but now after so many years I've become that ugly old man that finds joy in nothing. I don't want to be that person. I'm at the end of my rope and I'm ready to let go.
Edited: Moved to Dialysis: General Discussion - okarol/admin
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Geoff
This is ultimately your choice. But you usually seem so full of help for others on this board. Could you be feeling temporarily down (or depressed)? It's such a big step to pull the plug and it would not only be your mother who would miss you. I am not good with words but I send you a hug. :grouphug;
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I thought that you seemed more positive recently and were looking at ways of being able to get onto home hemo. Remembef, the care partner thing us really only necessary for he purpose of training. once tha is done, you could do it n your own. maybe if you feel better and have more control of your life, Home hemo is not a panacea for sorting everything out. however, if you feel better, the way that you view and handle this may be different. Imthought that you had a job?
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Geoff. I hear you. I care. I have to agree that a few weeks at a sunny beach sounds like paradise. Have you talked with your mom? Maybe start there. She knows you and what you've been through better than anyone. Maybe she can help you put it back together or make a plan. I wish I had a magic wand, but I don't. Sometimes it all feels unbearable. Only you know what is best for you.
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Geoff, your post really moved me. I am suffering from a debilitating illness, but with hard work there is a cure at the end of mine. Even so, there are times that I look at the possible years of treatment ahead of me and the prospect just seems overwhelming. I say this, because I understand in some small measure your sense of resignation. I have to fight against hopelessness creeping in all the time. I'm very sorry that it has gotten hold of you and cast its insidious pall over your life.
:cuddle;
I do agree with WIK, though. Talk with your mother. Since you said that she is the only one who would be hurt if you decided to just enjoy a few weeks of happiness before letting nature take its course, it seems that she may have some words of wisdom or comfort for you. Now, having said that, I know that my mother was a master of the guilt trip. You don't want that, especially since you feel that you are living to please others. On the other hand, by talking with your mother about how you feel, you may find an ally who can help you navigate the difficult waters ahead with whatever route you decide to take.
Aleta
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Ah, Geoff, so sad to hear that you are struggling. I want to plead with you to hang on, but I know that you have to make the decision that is right for you.
Geoff, I have two kids. One has a charmed life - people adore him, he is good at everything he attempts, and to make matters worse, he is absolutely stunning. My other child is the troubled genius in my life, nothing ever seems to come easily to him. I couldn't stand to lose either one. It would kill me. Any mother worth the title would tell you the same - no child is replaceable, and their achievements or appearance or income has precious little to do with your feelings toward them. Talk to your mom. Your parents sound like they are very bad at handling negative emotion, so don't expect her to say the perfect thing.
More people will miss you and be touched by your decision than you can imagine. Please make sure you give yourself time to consider everything, I also hesitate to say it, but I doubt you'd be able to enjoy many of your last days as the effects of no dialysis would probably catch up with you pretty early on. I don't want to hear that you planned your dream departure and then the reality was agony and disappointment.
Please keep this discussion going so we can help in any way we can. I wish you peace and clarity whatever you decide.
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THX all. I will have to discuss with mother and father then my sister too. I just can't see any future and I'm not enjoying life. When that quality of life goes away and you can't see any future that's worth all this crap I (we) have to go through just to live I think it's pretty much over. I've been fighting hard since 2002 and quite frankly I'm just tired. I don't find any reasons to get up in the morning. And the feeling of needing government assistance and the finanical assistance from my family I feel like I'm just a burden on everyone in my life. All the dreams I had have been crushed by this disease and even though I do fairly well on dialysis (with a lot of work) I just don't see a future where my quality of life gets any better. So instead of bleeding my parents dry of their money and trying to keep track of all these bills I have medically and just everyday day life costs I think it's better just to cut it off now to make things easy on the people in my life. I have been in a crappy mood lately and am tired of the arguments because I'm just not in a mood to deal with people. After all this time I think it's time for me to go naturally and end all the madness and quit trying to find ways to make my quality of life better. It's not working. Maybe in this process and man there is so much to do to get ready to go peacefully and naturally I'll find some inspiration but right now I'm highly doubting it. And yes I'm a master of putting on a happy face and not letting people see how things in my life actually are. And I support and I'm so happy for those that find those things to live for. I'm not seeing any better days coming so I'm going to go through the process and see what I can learn. Looking into how it works and figuring out how this all works is worth looking into at this point.
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That sounds like an excellent plan under the circumstances, Geoff. You will most likely need to tell your dialysis team and get a referral to a hospice program or other palliative care centre, just to discuss options until you know for sure.
I don't want to see you go, but I don't want this pain and hopelessness for you, either. I think you are very brave to face this situation head on and resolve to be honest with the people closest to you. I wish you only the best. :cuddle;
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:grouphug; :grouphug; :grouphug;
I support any decision you make. Knowing I could choose to stop was often the only real reason I kept going. I knew I was choosing to carry on in spite of the misery that dialysis can be - and that several years worth of transplant complications were. It did turn out better for me, but it was a long struggle.
Please, though, talk to your family and a counselor. Make sure you are making this decision for rational reasons, and not solely based on depression.
:grouphug;
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Geoff, my husband & I were just discussing your situation. I wonder if this could be done, so hear me out! Is there a way you could come to Tenn and stay with us, be trained at our clinic (NxStage). I have a couple friends who do their husbands on NxStage but do not work. They would go with you to train. Then when you are trained and ready for home, they can come to our home where you could dialysis in my presences for however long it takes. You will have your own equiptment and supplies. We have plenty of room!
Then, if you feel comfortable and can do it on your own, you can go whereever you wish, with the confidence of being in control of your own health. We will be there for you if anything should happen. Kind of wing you, if you know what I mean. Promise not to throw you from the nest till we know you can fly!!!!
I just think and believe, that you will feel alot better and more in control. I really do believe that, Geoff. Home therapy has done wonders for John. If it wasn't for all the other health issues, he would be alot more active. He still gets depressed, but not as bad as he use to.
If you want, I can check into this further. Only if you are willing though. I know it is no problem on this end. I just hate to see such a great guy who is so young just give up. Its just not you!
Think about it, seriously! You would be more than welcomed in our home!
God Bless, :bunny: :basket:
lmunchkin :kickstart;
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lmunchkin, that was the sweetest and kindest post I think I've ever read on IHD. :cuddle;
Oh, man! I so agree! lmunchkin, you are one special lady!
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lmunchkin, that was the sweetest and kindest post I think I've ever read on IHD. :cuddle;
Oh, man! I so agree! lmunchkin, you are one special lady!
Word.
Geoff, what an adventure this could be, something to shake you out of your rut, give you that change of scene, allow you an intellectual challenge as you learn this process and spend time with 2 new friends. Plus, this would surely be an IHD first that will be the talk of this place *forever*. You'll make history. If it can be done, please give it a go. You've nothing to lose and your life to regain. I'm emotionally invested now, I so want to see this happen.
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I never looked at it like that Cariad! It would be a first! Im pumped now and hope he accepts. He will make History! But I totally respect His decision. I was just extending some help to him not thinking about how this has never been attempted!
Come on Geoff, what you think! It is worth the try. If it doesnt work, well heck, at least you tried! Please seriously consider this!
'HAPPY EASTER',
lmunchkin :basket: :kickstart;
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You are Awesome MM. You might want to reconsider though, cause our home is a mess!!!! If he accepts, I will not have you stay in a Motel, no way! You will stay with us! We can fit you in. Iam so excited. Would you be willing to go and train with him too? That way he has a partner to train with and you will learn some things for yourself too, just in case! This is a fantastic idea. Thanks so much for your offer Moosemom, and I am honored by your graciousness.
This way, while Iam at work, you can take him to clinic and train, then home to watch me do John. This can work, I know it can. Problem is will Professionals be on board with it?
It's in his Court now.
lmunchkin :basket: :bunny: :kickstart;
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And for this reason, Iam truly sorry. I did not mean to put Geoff in this situation, especially, without his knowing it first. That was not my intention at all, I just simply want to help him, that is it! But Noah, you are exactly right. It is his decision. But I don't want him to move up here. His home is in FLA with his family. Im just merely offering him a chance to do home therapy and a training partner. He would not have to pull up stakes at all, but just take a month or so vacation.
It would be no different than finding a center to go to while on vacation. I know that he has shown interest in home hemo, but a person to go with him to train has been the hold up.
But, Iam at fault for not bringing this to his attention first. What I meant for good may end up not so good after all. I really want to help, and that is my only motive. I promise you, it is not about me, its about helping others out in any way I can.
I hope I have not aligenated Geoff from doing this before consulting him. I don't think I could stand the fact, that he may be mad at this fact.
Im so sorry! I meant no harm. I will back off now. The offer still stands!
God Bless,
lmunchkin :basket: :kickstart;
P.S Noah, reality just hit me that I may have lost his friendship & trust. Why did I do this without consulting him first.....
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People what I have just demonstrated is what they call, "Putting the Cart before the Horse!" Iam so sorry to bring you all into this.
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Geoffcamp, what a great suggestion and geneous offer for Lmunchkin to make. I have another suggestion if this is not acceptable. if you contact NxStage, or look on their website you will be able to find centers near you which do NXStage and are Experience the Difference centers. these are centers which offer tasters of NxStage. you go to the center for a period of two weeks ( I think it is) and they perfotm NxStage treatments on you, so that you have the opportunity to try NxStage and feel the benefits.
You have obviously dealt with this for a long time, and I wonder if your current frame of mind is the result of depression. you may be able to regain your previous positive outlook if you get some help for this.
I hope that you will consider our suggestions. Before chacking out of this World, I do hope that you will explore these possibilities.
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Wow, I needed a good cry today!
Usually all I need to do is think about my mom and her calciphylaxis.
Here is a photo of part of her abdomen after she succumbed to sepsis. Almost her whole body was covered in this eschar. This disease is super painful and I can remember her chewing oxycodine like candy to try and get pain relief.
I would have added more pics but this one is good enough to show you the damage and is not so gross.
Mom was always cheerful and loved life.
She turned to me the day before she died and with a big hug she said...
It is what it is.
You have all my respect in whatever path you choose!
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Geoff, last year, around this time (I lost my job while on FMLA on April 1, 2009), - I can relate to you so much. I'd tell you when I started dialysis and all that jazz, but it doesn't matter. I raised one son alone, and he texted me from his business trip last week at GDC and I should be glad he thought of me, but I am basically alone. His success, the one I sacrificed for, is almost a slap in the face as it keeps him a slave to the corporate model now, and that doesn't jive with any dialysis or transplant idea of support according to, well, you know. We were a small family, and I started from scratch and made myself a financial analyst with a masters, and he a successful gamer. The problem is, the medical system TREATS single people as if they don't have a right to exist. I constantly feel as though I am being treated like I am either or 80 or 5. There is nothing wrong with that if you are 80 or 5, but when you are 53 - (I don't know how old you are, but.....) No wonder you feel that way! After nearly a year in the clinic, today I am halfway through training for home hemo SOLO. I am like you. I educated myself, I am very independent, I was an earner, a traveler, I lived. I don't have diabetes. I have a rare kidney disease that was diagnosed in 2010. I was just going through the empty nest thing -talk about kicking a guy (or gal) when she's down. I even told my son, maybe about 8 months ago, that I wanted to quit, just like you - have hospice minimize it and be done with it, for as far as I could see, this was what my future looked like. So, I figured since I was so close to the end, when my son asked what I wanted for xmas I told him I wanted to go back to St. Maarten, a Caribbean island that I have taken him to twice (this would be my fifth time there, so I felt safe and knew the place, even saw a doctor there...), although I think Key West or Sanibel in W. Fla would do the trick in an emergency.... what coast are you on? He gave me an AA ticket last xmas right after that, the only airlines that goes from Seattle to St. Maarten and back in a day. I went, last year, right about now. I scanned years of cards and photos for months and prepared to die up until then. I couldn't see home hemo in my future yet, I only saw losses. Job, then money, friends....etc. I went to St. Maarten for 2 weeks. I spent money I shouldn't have. My son pitched in and again, normally, that would not have been a request on my part as I would have covered it myself. I made friends with a Canadian Security officer and a London cop and his wife, one of the few London cops who carry guns in St. Maarten, no one else. Go figure, since I have a problem with authority figures, except apparently when they are off duty. Anyways, I started dialysis a month later, a year ago. In fact, the day I was supposed to leave for St. Maarten after three months of planning, I was so nauseas I was in the emergency room, and a nurse/social worker told me to move my butt when I told her I was supposed to catch a flight to the islands. Everyone else held me there for a long time for little things, even when I said I had a plane to catch. Funny, because I called a cab, I was planning on packing all day but I got sick instead, so I ran into my house with the cab outside, and forgot to change my slipper-like shoes, I even threw mis matched items in the bag and had to buy shoes and clothes on the island, but seriously, on an island, what do you need? I had a bathing suit, and they sold dresses and wraps on the beach, and besides that, I bought one pair of frumpty comfortable shoes that held by swollen feet for the duration. A year later, I approach April 1st with caution. This marks the middle of my training for home hemo. I feel like it is boot camp. I am beat, and now that I am alone again, there are days my cat alone keeps me going, she is so loving, I don't have a replacement for "me" should I go. No doubt dialysis is a dance with death, but I just went to a small part of a conference in Seattle, where some patients were involved with and spoke to, their local regional Renal Network people and seemed to be heard. There is such a huge gap and a need for people just like you and me - kidney disease is on the rise, and according to my doctor, "dialysis IS the treatment" - apparently, from Georgia to Seattle, docs are leaving people to fend for themselves. No one, unfortunately, today - anyone who knew me, does not understand me at all now. How could they? Who would imagine such grief if they had not experienced it? Please hang in there, for me, because single people need a voice. I will find out tomorrow if my complaint was a good or bad thing, but when I had to tell my trainer that she was just that and not my parole officer, well, we'll see...don't let some lousy medical professional or incompetent or cruel tech make you decide about YOUR life....they are inconsequential. Is is YOU that matters, despite how they are trained (stepford) to act otherwise (hooking a machine up to a machine). You have rights. You exist for a reason. The beach is there. Find the closest one, and go for it. Do whatever you need to do to connect with life. And assert your rights. We still have some, for now. I wish you light around the next corner, a peaceful beach, and a friend with an understanding ear. You never know what a fresh morning brings. I am glad you are here.
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No Im not going to beat myself up over this. Just wish I had done the more appropriate thing by contacting him first. Lord knows my heart and my intentions. I just hope Geoff understands that my offer was/is genuine. I guess I got so excited about the possiblities of helping this nice guy out. He is so young MM! He has been dealing with this for a long time now and understandably wants to stop. I guess I just want to offer him another way!
Your offer did not surprise me one bit, MM, cause I know you meant it too. We are all a family here. I don't look at any of yall as strangers! Since joining IHD and getting help from all of you, IHD has become very special to me! It feels like family to us. It was heartfelt my intentions as yours was also.
If he, Geoff, is upset with me, well, he would certainly have a right. To put it out for all to see was simply wrong. I see that now!
God Bless,
lmunchkin :basket: :bunny: :kickstart;
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Perhaps you did put the cart before the horse, lmunchinkin, but that is the most wonderful offer. I'm inclined to get my horse and cart mixed up, too. You should certainly not beat yourself up over it. You are a kind and generous woman. :flower;
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Thanks Mary D. I think all on IHD are kind. This site is full of very thoughtful people whether struggling with ESRD or spouses or even friends. We all try our best! Yea, we have our days when things don't seem so bright! But we do have each others back and that is a GOOD thing!
That is what makes this site so unique!
lmunchkin :basket: :bunny: :kickstart;
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This has made my day... It's a hugely wonderful heartfelt offer and thats a beautiful thing. So beautiful it brought tears to my eyes.. To have someone offer their home is a warm hearted selfless act and i commend you, and MM for all your offering. And thats just what it is... an 'offering' :) There is nothing in it that could possibly offend 'me' if it were me it was directed at thats for sure :cuddle; I hope ya (G) feel this blessing and the love whether ya want to take them up on it or not :flower;
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Are you OK Geoff? I'm thinking about you and supporting you in whatever you do or don't do.
Diane
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What a wonderful offer lmunchkin. It gives Geoff an option that he never thought possible. However, it's time for all of you to now back off. Even said jokingly by Moosemom, no it does seem like some of you are now wanting to run Geoff's life for him. It's becoming more about you than Geoff. How many of you pleading with Geoff to take up lmunchkin's offer would even consider doing the same for yourselves? You would actually pull up stakes with all that entails, and move away from your family to take up the offer of a cyber acquaintance? For real? Talk about living vicariously through someone else's life.
What the hell is this? "It's time for all of you to now back off?" Gwyn and I played "spot the hypocrisy" with this one. So, Geoff has asked you to be his spokesperson? You know when another person would consider this too far? But we're the ones trying to run someone else's life?
Living vicariously through someone else? Once again, noahvale, you've taken someone's posts and used them to insult. I think it's time that you back off. Not the general you, either. I know MM well enough to know that she is just about the most considerate, tactful, compassionate person that anyone could ever have the pleasure of meeting. I don't know lmunchkin very well, but I do know I am amazed she makes time for IHD because I certainly couldn't be bothered if I had her schedule. As for me, with two kids, flights all over the US, a visa, a lawsuit, a clinical trial, visits to friends I haven't seen in months or years - I am not sitting here looking for more excitement or adventure. Kind of fed up with the frenzied pace of my own life, let alone someone else's. How presumptuous of you (not the general you) to claim to know anyone else's feelings or intentions.
This has made my day... It's a hugely wonderful heartfelt offer and thats a beautiful thing. So beautiful it brought tears to my eyes.. To have someone offer their home is a warm hearted selfless act and i commend you, and MM for all your offering. And thats just what it is... an 'offering' :) There is nothing in it that could possibly offend 'me' if it were me it was directed at thats for sure :cuddle; I hope ya (G) feel this blessing and the love whether ya want to take them up on it or not :flower;
Absolutely! It is an *offer*. One that Geoff may well choose to decline and everyone would completely understand. Geoff has jumped in with two feet to try to help people on this site - posting his phone number for others, which is something I would never have the nerve to do - I think he can handle someone else wanting to return the kindness by showing that there are people here willing to take a chance and let him into their lives, too. The thing about this situation is, one of the options is death. This is on a whole different level to most problems that people face. When I posted a despairing message a couple of years ago, I was flooded with invitations to visit these 'cyber acquaintances' as noahvale is quick to dismiss us all as. I did take one member up on her offer, and wanted to take MM up on hers but, typical of my life, a brutal shingles outbreak squashed that possibility. I am also going to visit another member here who offered her home as a place to escape my crazy relations. These offers pulled me out of a horrible depression even though I had to decline most of them.
What if Geoff had posted this message and all he got were a few little hug icons in response? These are real lives in the balance, real friendships, real people reading these messages who are unable to get these stories out of their heads and want to help find solutions. Lmunchkin's offered knocked me over with its trust and kindness.
However, on these two points, you are wrong.
I am using "you" in the larger context of the word, not necessarily you in particular.
There were 3 of us who showed initial enthusiasm for this plan: MM, lmunchkin, and me. That is hardly a general use of the word 'you'. Since I consider myself to be one third of that 'you' I can tell you that you are wrong on all counts when it comes to me. Don't claim to know my intentions or desires. If you want to know them, you are going to need to ask the source.
Oh, and I ran away to England with a new acquaintance many years ago, told almost no one and moved in with the guy. It's a really compelling cautionary tale, because I ended up falling pregnant and it was only 18 months after we were married!
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Can we please stop making this about us.
Diane
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Geoff, I think it would be a difficult decision. Whatever you decide you'll have friends and support here.
:grouphug;
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I disagree that anyone is making this about anyone but Geoff. I am baffled as to why it seems so important to some to control everyone else's approach to offering support to another member.
I have a simple suggestion. Could someone please call the number Geoff has listed and see if he is OK, maybe ask if he would like to talk or just wants to be left alone? I would happily call but I am not certain that he even knows who I am. Perhaps someone who has interacted with him before, or a more high-profile member could check in on him?
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I disagree that anyone is making this about anyone but Geoff. I am baffled as to why it seems so important to some to control everyone else's approach to offering support to another member.
I have a simple suggestion. Could someone please call the number Geoff has listed and see if he is OK, maybe ask if he would like to talk or just wants to be left alone? I would happily call but I am not certain that he even knows who I am. Perhaps someone who has interacted with him before, or a more high-profile member could check in on him?
Where is the phone number?
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Phone number is right under his avatar. He has encouraged anyone who wants to talk to him to use it.
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:P I called him and woke him up. Dang it, I forgot he was in Florida.
Well, Geoff, please call me back when you can. :waving;
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Aw, I'm sure he appreciated the effort all the same. Sweet dreams, Geoff!
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First off I want to say thank you for the thoughts an efforts that have been shown. Second , I can't see moose moms post any more? Deleted? What ever the case may be in someone else's view does not mean I take it the same way. I'm truly grateful to have IHD ans all the people here! Sometimes I choose to vent here... Meaning just because I write it down it is not always the same feelings I have the next day, week or month. I am still working on getting that NxStage machine and I may well take you up on the offer to help train. I want to say how much I aporicate all of you. I'm a little disappointed this stirred up a mini cyber battle but I do not think anyone had bad intentions. Where I live is very close to my entire family. It's a blessing and acurse!! LOL. But I have to speak with them first and have everything all set up to train if I decide to travel. I know that advice from people a tally using the machine will be invaluable.
And yes I'm well aware that depression is a big part of my issues. If I could find one thing to spark my brain and that I enjoy things might be a lot differant. There are a lot of steps to walk before I can come to any confusions.
I want to offer a sincere thank you for the kind offer and it's not out of the question. I just have to talk it out with the people close to me and my life and work on getting the machine to practice on and the ok from my docs. Like I said having training from patients and care givers with experience would make things a lot easier.
Moose mom. I'm sorry to see you deleted posts, I didn't get to read all of them. I firmly believe that you should NEVER feel the need to edit yourself here at IHD.
I can't tell you how much it means to me to get all of your offers and words if kindness. They will never be forgotten and I'm sure this is a post I'll read and read again. Sometimes a good shove in the right direction is all we need. Well all of you went over and beyond with the generous offers made and the best wishes along with the feelings of others in my similar situation.
I never think for a second anyone has anything but good intentions. It's very easy to get caught up and write your thoughts as they come you. If fact I'm in awe of all the thoughts and offers so many have suggested. I hope that 2 way diologe never stops. I have no room or right in my life to critize anyone for trying to take action. If fact it makes me feel a log better knowing I have this place to let my feelings pur out. It gets very difficult trying to act like everything is perfect when in reality things are messy. I'm truly sorry I didn't get to read some posts that were deleted. There is no censorship here even on your own feelings. Nothing should stop you in saying whatever you want?!?!? That's the whole point of this board in my opinion.
I'll be doing a lot if work in the next few weeks deciding what is best and seeing if I can find some light at the end of tunnel.
Thank you all for your understanding, apprication and kind offers. As I work thru all this I my take you up on your offers and get some help training and listening to others stories.
Just to be clear I really really appricate all of your responses. It's always nice to know someone cares bad understands. A sincere thank you to all of you!
G.
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It's good to hear from you again, Geoff.
And MooseMom - I saddens me that you felt you had to delete your posts. You are always so generous and thoughtful in your posts.
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Geoff, all of us here understand what it is like to feel like you've reached bottom. I think venting is valuable. God knows how often I've come onto IHD and done some major venting myself, and it makes me feel better, as if I've lanced a boil.
I'll summarize the posts I've deleted because I don't want anyone to think there is some big mystery here.
I simply made two points. One...everyone here knows my only child has high-functioning autism. He knows he's "different", but that doesn't stop him from putting himself out there. I've watched him struggle for all of these years, and far from ever thinking he was a burden, he is the funniest and most courageous person that I know. I KNOW that sounds trite. I've heard the same thing from other parents with a child with disabilities, and I'd always dismiss these types of statements as just a load of piffle. And here I am, now, saying the same thing. But it's true. And I wouldn't be surprised if your own mother thought the same of you. You mustn't assume that you know the hearts of others. While I understand the desire not to be a burden, I also understand the desire to want to help your struggling child.
The second point I made was an offer to lmunchkin to come and help her out should you decide to take her up on HER offer. Lmunchkin has a LOT on her plate, as I'm sure you know. She has her own hubby who is struggling with a LOT of co-morbidities, PLUS she works and STILL has the ordinary domestic chores to keep up with. I thought she might want an extra pair of hands. I have NO experience with NxStage, so I just thought that I could do all the other stuff to help her out around the house. That's all.
So, when people started implying that this was becoming all about her (or all about anyone else BUT you), and when I saw lmunchkin express such regret for having possibly so mortally offended you, I deleted my posts in protest. I was afraid I'd succumb to the temptation of saying something I might later regret, and THEN it WOULD become all about everyone BUT you. Does that make any sense at all? Yesterday was a crappy day for me, lots of inconsequential stupidities, so I wasn't in the best mood to begin with, so deleting my posts was my way of saying that this discussion had suddenly gone completely off the rails! LOL! But we can kinda get like that sometimes here on IHD. :P
Anyway, the most important thing is that you know that there are people here who would spring into action on your behalf if you felt it would help. It's not always easy to show support on a website. These are just words on a screen accompanied by dancing bananas and barfing icons. While words can certainly help, sometimes actions ARE louder than words.
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I truly want to give everyone a huge hug. :grouphug;
Geoff, I'm thinking about you.... alot. :waving;
MM, your words are so direct and from the heart. I'm sorry you felt the need to delete them and I admire you for reposting.
And Lmunchin, I still think you are incredibly sweet. :flower;
Aleta
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Thank you MM. I realize you took the high road. I remain thankful to all of my cyber friends here at IHD. I'm talking with my staff at dialysis center and I'm kind of skirting the real issues in my life in order to get into home dialysis machine. So I've bottled up a lot and I'm not sure where to unload all my baggage. I am very surprised how difficult these decisions are!! I'm working on my living will and my DNR on my own I understand you only need a witness and a notary.
I completely understand how you feel as I have a giving personality (sometimes a big flaw!). I know my mom and even my father from time to time really just want to do anything to make me happy. Sometimes I feel like I take advantage of her kindness and caring! I just have no idea how or what I would do if they were not around or didn't have the income and lifestyle they and I have become accustomed to. I have a lot to be thankful for. My parents bought me a really nice little condo to live in and I enjoy corvettes and my dad and I own 2 of which I'm the only one who ever drives them to car shows or for fun. So I feel really guilty knowing how many even here have it much more difficult than I do. But I just always wanted a family and wife a typical life and now I'm sterile and seem to meet the worst women ever!! LOL. I'm easily taken advantage of and it must be stamped on my forehead! Spending time with family (sister her kids and husband, my parents and my in laws) I feel like a total complete FAILURE. Nothing is going to change so I'm feeling like I'm just a waste of space and my sister and her kids could benefit much more if my life was not a drain on my parents. I would love to go back to work but my body has a different idea. I did work for years and between the job and dialysis it felt like Groundhog Day over and over and over again. So as truly lucky as I am I can not seem to find that spark I used to have. Nothing really means much to me right now. I also can't help but to lament on how my life should have been. The only things on my mind are the bad things. Then I feel like a big f'ing whiner for complaining. I've read so many posts of people who have it sooooo much worse than I do. But in my head I just can't justify spending another 10 years doing the same thing and with the cost of healthcare I'm not sure i want my family and friends to watch me slowly die or go out on my own terms. Depression, financial stress and no hope for any changes in the future I'm finding it more and more difficult to find ways to stop laying in bed and looking at the ceiling. I know I need help. I fully realize that but then I'm sure I'll sacrifice the current benefits or future benefits. I came back here to IHD to unload all the burdens I feel. I'm not trying to be dramatic or fake because I really do feel like its time to stop this madness and enjoy a few days to a week truly enjoying my last adventure then hopefully come back and slip away with hospice assistance. It's a decision I've been struggling with for about a year. It's an everyday struggle to keep going like this. I'm not happy and I know and feel like I project that on the people who are close to me. I push them away and when I do hang out with them they must feel like I'm a huge moody jerk. I don't know what to do or where to turn but I'm coping as best I can but not for myself more for my family. I'm slipping more and more into my shell I don't feel like doing anything. I'm not sure how I do dialysis. I do change my times quite a bit, my center has been very accommodating. I feel like I should shut up and just be happy with the material things in life. But I long for something so much more. And I am unable to reach those things I want so badly. Just to be loved and cared for just for me not any other reasons and all of it seems so much out of my reach. And there another rant! :thumbdown; I didn't mean to stir up the pot when I posted my feelings. I do really find talking here cathartic. And I can't tell you how much ALL of you mean to me. Whatever happens at least I always had a place to unload my true feelings. No one should feel the need to censor themselves here. If you feel the need to make a point or an argument there is always PM. I'm working hard at figuring out how to manage my feelings and how I should proceed with my feelings of no hope for change. I'm sure I will be able to make a lot more decisions after I get into home dialysis. And having the training option offered I may find some hope and feelings of some control in my life. Thank you all again. It's my true pleasure to be able to share with all of you here. Who knows I could win the lottery tomorrow, not that money could solve all my issues but it certainly wouldn't hurt!! LOL. Thank you for reading, listening and understanding. And the amazing offer to get away for awhile and learn from all the experiences on the home NxStage machine. Thank you all!! No place better to get my true feelings out!! G.
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As someone else said, Unless you arrange dialysis for the time that you spend enjoying your beach time, I really don't think that you will have a nice week of it. I cannot skip more than a day of dialysis without starting to feel the effects, so if you do decide to do this, enjoy it but do factor dialysis in. then check into your hospice after. I don't want you to go. your family give, because they want to. they understand our situation. you spund close to your family, so don't you think that your life is worth more to them than the money that will be saved by you not being there? What about those gorgeous children your sister has? how ill they feel if their uncle isn't around? I am not trying to send you on a guilt trip here and the decision is ultimately yours. however there are people out there that value you, amd that includes myslf and others on this Forum. :grouphug; :grouphug;
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Geoff , reading your recent posts it seems to me you have lost your purpose in life . You say you feel like a failure , that is the frustrating thing about a chronic health condition - it robs you of so much control ! You were very young when diagnosed and hence were robbed of the chance to achieve many of your goals . This is no body's fault but a fact you just have to accept .
To be happy and fullfilled we all need a purpose in life and need to feel useful . Have you thought about volunteer work , even just for a few hours a week , there are many worthwhile causes you could help . I cannot leave Laurie alone now so I am a volunteer transcriber for a family history organization . Maybe you could find something that you are interested in or passionate about . If you love children , the local school I am sure would be delighted to have your help- listening and helping with reading programs or similar . The hospital always need people who are willing to nurse babies born from drug affected mothers .
I don't want to be seen as someone just mouthing platitudes but just trying to help get your spark back . Who knows who you could meet? Maybe Miss Right is still out there waiting for you !
I hope this hump is a temporary one and the ride over it is short . I wish you all the luck in the world . Brenda
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Geoff we could always use help on the site.
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I have been watching this thread and trying to think of something inspiring to add to all these wonderful replies. I tried to think back to a time when I felt like you do Geoff, and realized that it is always when I am feeling lousy, physically. I can remember times when I just prayed to die peacefully in my sleep, so I didn't have to continue hurting and being a burden on my family. There is so much guilt and shame that goes along with failing health, no matter what the disease. That being said, my mental state always improves when I feel better. If you have been doing D in-center, I would bet that has a lot to do with your depression. If you can do one thing before making your decision to stop D, please look into doing home hemo. I am new to it myself, and this is my first week being home on my own, but I feel so much better both physically and mentally. It has given me a purpose, almost like a job. It sounds crazy, and it certainly doesn't help my finances, but it makes me feel like I am accomplishing something that not everyone can do. My husband only attended 3 of the training sessions, and they were fine with that. He did have to be here for my first home treatment, but my nurse really wants me to be totally responsible for everything. He is only here to assist, if needed. I think the most difficult part of the training was learning to insert my own needles, and you already have that part eliminated with your catheter. Please consider waiting to make a decision until you have given home hemo a try. Ask about the "experience the difference" program that others have recommended. You have nothing to lose and everything to gain. Best wishes no matter what you decide!
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So I've bottled up a lot and I'm not sure where to unload all my baggage.
IHD is the place to go to to unload baggage!
I'm working on my living will and my DNR on my own I understand you only need a witness and a notary.
Everyone should do this, no matter your health status. This is one area where you can grab control.
I have a lot to be thankful for.
I am guilty of spending too much time reflecting upon what I've lost or what I don't have because of CKD, and I'm not proud of that. It seems to be the way I am wired, and I often have to sit myself down and make the conscious decision to count my blessings, because there ARE a lot of those. It is a skill that I have to practice. You may be the same. You may simply have to sit down and literally make a list of all the good things in your life that you appreciate. I fight this particular battle every day. I find it far too easy to slip into resentment and anger, and I become my own worst enemy. Don't let this happen to you! It's a crappy way to live, and the worst part about this mindset is that it robs you of even more happiness. It's a terrible self-inflicted wound.
So as truly lucky as I am I can not seem to find that spark I used to have. Nothing really means much to me right now. I also can't help but to lament on how my life should have been. The only things on my mind are the bad things.
See above. Oh, I am so guilty of this, and again, you have to fight each day to change your mindset. This is where the battle is...the mind. Chronic disease is a persistent enemy, and it's true target is your soul. Renal disease sends your life out of control, but there ARE areas where we can fight to regain that control, and your emotional outlook is one of those areas. We all know that depression is common, and when your mind is tired, your body is going to mirror that fatigue.
Maybe you can find something to intellectually stimulate you. Can you find a new hobby? One thing I did..I'd go to the bookstore/newsagent's and buy a magazine on a subject I knew absolutely nothing about. I also started looking at DVDs from The Teaching Company about all sorts of topics such as "How to appreciate good music" and the Middle Ages. Right now I'd watching a course on the history of world literature. I like learning new stuff. Maybe you could learn something new, and that might ignite that spark.
I know I need help. I fully realize that but then I'm sure I'll sacrifice the current benefits or future benefits.
I don't know what this means!
I'm not happy and I know and feel like I project that on the people who are close to me. I push them away and when I do hang out with them they must feel like I'm a huge moody jerk. I don't know what to do or where to turn but I'm coping as best I can but not for myself more for my family. I'm slipping more and more into my shell I don't feel like doing anything.
The farther into your shell you slip, the harder it is to come back out. I find myself doing the same thing, and once again, I have to make a concerted effort to change that mindset. I push my husband away, and it is just self-destructive. It's anger at the world made manifest. I've told him that's what I do and that I'm really working hard to change it. I find I really do feel so much better and so much closer to my family when I make the, again, conscious decision to just stop it and to reach out and let people help me in maybe just a small way. It takes a lot of grace and self-confidence to allow someone to help you.
I feel like I should shut up and just be happy with the material things in life. But I long for something so much more. And I am unable to reach those things I want so badly. Just to be loved and cared for just for me not any other reasons and all of it seems so much out of my reach
Do you mean you wish to have a wife? Is that what you want most? Is it really an impossible goal?
I'm working hard at figuring out how to manage my feelings and how I should proceed with my feelings of no hope for change.
Life is full of changes. It's hard to avoid change. Many people fear it, but it happens anyway. Why should you be innoculated from change? The world is constantly moving, changing. In a few years, portable artificial kidneys may be the road to freedom. You have a lot to live for in this day and age of rapid changes in technology. Dialysis is outdated and expensive and not really terribly efficient, and with people getting older and/or sicker, there is a desperate need for an alternative to dialysis. I truly believe that this is the wave of the future and that it is not that far away. Continue to work on how to cope with your feelings. I get frustrated with anyone who tells me "you have to change your outlook" etc because I already KNOW that, thank you very much, it's HOW to do that that's the problem. It's damned hard work.
I am always intrigued by stories you hear at the end of news programs, you know, the segments at the end that are occupied by "nice" stories. People with huge obstacles in their lives somehow find the inspiration to do good. I remember a local story of a man who'd been on dialysis for a billion years still volunteered at the local food bank or some such place, and I wondered how on earth he possibly could do that! But if ONE person could find that spark, then that must mean that there IS a spark in the first place, you know? I hope you find your spark. I'm still looking for mine. We won't remain sparkless forever!
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So, when people started implying that this was becoming all about her (or all about anyone else BUT you), and when I saw lmunchkin express such regret for having possibly so mortally offended you, I deleted my posts in protest.
This was what set me off as well. There are many ways to offer support, and the way this offer was twisted around until it could be branded a selfish gesture was all it took to light my fuse. Geoff, you seem like a person who does not like conflict, so I'm sorry I was unable to ignore this and went for the "low road" as you might say. I spent years working on crisis lines and if they taught me one thing it is to be direct. It saves so much time and avoids so many misunderstandings. But I regret that it seems to have had the unwanted side effect of upsetting you, too.
Geoff, in addition for hunting for that passion that could make dialysis worth the effort, please try to resist the temptation to assume that you know what anyone else thinks of you. You feel that others must see you as a "huge moody jerk" but I would bet that is not true. I think the people closest to you know you have plenty weighing on you right now and they probably have no idea how to broach the subject or even if they should try.
I heard an interview with the man who wrote The Noonday Demon, an absolutely breathtaking book about depression, but very hard to read as it's, yes, terribly sad (one might even say depressing). He said that what helped him recover from his incredibly severe depression was "to be open to the love that was around me". When you recognize someone making an effort to be there for you, accept it. I always feared everyone would think I was such a drama queen for making such a big deal out of a little thing like kidney failure - because kidney failure was a little thing to me for most of my life. Quite the opposite happened and the outpouring of support was overwhelming. It was hard to allow people to help, but it actually strengthened our friendship in the end.
I know you're a bit gun-shy when it comes to relationships, too, but it really is true that if you cannot see yourself as good dating material, it will be almost impossible for women to see your good qualities. I look at your pictures and read your posts and see a handsome, intelligent, fun young man with all the compassion in the world. Right now a rough patch is causing you to lose sight of that. If you know it's time to stop dialysis, then of course we are all here for you, but I really hope you come out the other side of this with even more fight and courage than you've already shown.
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depression can distort thinking so if you ever do decide 'enough is enough' i hope that you will address the depression first. I have felt this way a few times, and in my case, this way of thinking always stems from depression. I know not everyone agrees with medication for depression, it's not for everyone, but it works for me. Since I believe that renal failure disrupts the chemical balance in the brain, it should be accepted, and treated like any other medical condition, and not have stigma attached to it, particularly in our situation. I remember telling a shrink, that I felt weak because I needed this sort of help and his reply to me was 'weak, with all that you have had to deal with? you are one of the strongest people that I have met.' some people find counseling helpful, others cognitive behavioral therapy. I must admit that these only had limited success with me, but whatever works. hope you will be able to get some help for your depression. suggest you speak to your neph, dialysis nurse or social worker to get some help.