End of the rope!

[amanda100wilson]

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.

[jjneyjr]

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!

[MooseMom]

...

[rfranzi]

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.

[lmunchkin]

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 

[MaryD]

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.       

[lmunchkin]

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

[boswife]

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      I hope ya (G) feel this blessing and the love whether ya want to take them up on it or not   

[WishIKnew]

Are you OK Geoff?  I'm thinking about you and supporting you in whatever you do or don't do.



Diane

[cariad]

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      I hope ya (G) feel this blessing and the love whether ya want to take them up on it or not   

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!

[WishIKnew]

Can we please stop making this about us. 

Diane

[Deanne]

Geoff, I think it would be a difficult decision. Whatever you decide you'll have friends and support here.

 

[cariad]

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?

[okarol]

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?

[cariad]

Phone number is right under his avatar. He has encouraged anyone who wants to talk to him to use it.

[okarol]

  I called him and woke him up. Dang it, I forgot he was in Florida.
Well, Geoff, please call me back when you can. 

[cariad]

Aw, I'm sure he appreciated the effort all the same. Sweet dreams, Geoff!

[geoffcamp]

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.

[MaryD]

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.

[MooseMom]

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.

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.

[willowtreewren]

I truly want to give everyone a huge hug. 

Geoff, I'm thinking about you.... alot. 

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. 

Aleta

[geoffcamp]

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!     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.

[amanda100wilson]

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.

[brenda seal]

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

[Sluff]

Geoff we could always use help on the site.