Is it just me?

[MooseMom]

I don't understand it.  As I go through this process of getting ready for D, I look around me here at IHD, and I don't understand why I seem to be so traumatized while most of the rest of you seem so sanguine.  There truly must be something wrong with me, and I am hoping that you all will share your secrets.  For example, in the past few weeks, there have been posts by people who are just about to have their fistulas created, and everyone seemed to think it was no big deal.  I didn't dare post that getting my fistula was the worst day of my life (I didn't want to scare anyone) and that two months on, I hate my fistula with a seething passion because it always feels like there is an electric current running through my arm.  It pinches and yelps and buzzes and by the end of the evening after a full day of pinching and yelping and buzzing, it just damn hurts.  It's not mature yet, but I can see the roadworks as my blood pathways reconfigure themselves, and I look like something out of Tron.  And the chemical stress test I was concerned about?  It was even worse than I imagined it to be.  I was sick as a dog because they wouldn't let me eat anything for like 9 hours.  As a matter of fact, this whole fistula thing has turned out worse that I thought it would be, and you all KNOW how freaked I was about it before the surgery.  So, is it just me?  Are my perceptions of things just so amplified that it borders on the abnormal?  Are these things really no big deal but I somehow make them into a big deal?  Or do I just spill my guts with more wild abandon than most people?  In the middle of the night when you can't sleep, when there's no one on IHD and everyone in your world is immersed in dreaming, do you ever feel fear or anger that you don't share with anyone else?  How much do you tell on IHD?  Really, is it just me?

[billybags]

No, I agree with most of what you are saying. I am a carer for my husband and yes it gets me down, my husband is on a night cycler and the noise and the sight of it , I feel like screaming, this machine is intrusive in my bed room. The tubes that are in my husband are not normal, they should not be there. This is what being on dialysis means. If you hate your fistula, you hate it. I have seen a few and they look bloody awful. I always say every one is not the same, we are all different, we all have different needs, we all feel different pain.

[MooseMom]

I always say every one is not the same, we are all different, we all have different needs, we all feel different pain.

I've always thought this was true, but everyone here seems so much more adept than me at just accepting fate and living through it.

[paul.karen]

For me well i HATE DIALYSIS.

But knowing that i am so much better off then so many other people (people with incurable cancer-blind people-people who cant walk ect ect ect.)  It makes me see things in a broader picture.  I think well i have a inconvenience yes it is a bad thing kidney disease.  But i bet SO MANY people would trade places with me in a heart beat.

You MM are kinda hit with the double whammy.  You are a caregiver and then you find out that you have CKD and will need to start D soon.  So you have to worry about more then just yourself (as do many other parents) so i think this may have an additional effect on your thought pattern.

For me kidney disease or not I'm surprised i have lasted this long in life.
I was badly badly abusing myself for well over 20 years.
So in my head i kinda figure well for my past decisions in life this is my punishment.  Even though it was passed on in my genes.

This has helped me cope and deal with my disease.   
You will get through it 

[MooseMom]

For me kidney disease or not I'm surprised i have lasted this long in life.
I was badly badly abusing myself for well over 20 years.
So in my head i kinda figure well for my past decisions in life this is my punishment.  Even though it was passed on in my genes.

This has helped me cope and deal with my disease.   
You will get through it 

It makes me profoundly unhappy that you even for a moment think of ESRD as punishment because you have always been so kind to me, and you don't deserve this; I don't care what you did to yourself in the past.  I don't know if ESRD has helped you become the compassionate person you are now; if so, then maybe for you, ESRD has a purpose, and maybe this helps you cope.  I hope so, because you are as deserving of a happy life as anyone else around here.

[Henry P Snicklesnorter]

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[Sunny]

Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.

[MooseMom]

I've never asked, "Why me"?  It's always been, "Why not me?" which is really a scarier question.

I want to be where you are HPS.  Yours is the attitude I want for myself.  How do I get there?  Is it possible to "just do it"?  Sometimes I feel exactly that way...don't agonize over what I can't change.  But I want to be able to feel that way ALL the time.  How do you do it?

[MooseMom]

Moosemom,
Yesterday I went for my check-up with my nephrologist and she told me it was time to consider when I was going to get my fistula.
I told her I'm not ready to think about it, I'm not going to think about, and quit bugging me about it dammit! I refuse at this point it time! I don't care about the consequences right now. I think I will blissfully live in denial for a few more months. I will not go quietly. I will kick and scream the whole way. I don't say that much here on IHD because everyone seems to take it so well, like you said. But I'm terrified.No, you are NOT alone.

I'm not glad you feel this way, but I am glad you've posted about it.  That's an honest assessment of how you feel, and I am grateful that you said something.  I was starting to think I was just a freak.  Sometimes I wish I could be blissfully ignorant or live in denial, but I face things head on ALL the time, and that's not necessarily always a good thing.  Listen, Sunny, this may not make you feel better, but while I do hate my fistula and having it created was emotionally horrible (I blubbed until they finally knocked me out...it was the only way for them to shut me up), I do feel some sense of relief that I have now crossed that particular obstacle and that the thing should be ready when I need it, which removes one worry.  Maybe you could just allow yourself to gradually get used to the idea.

[Sunny]

I am getting used to the idea of a fistula---for the last nine years.
Part of my issue is that my kidney disease is due to an autoimmune disease for which I had to fight so hard to overcome. If I hadn't had the stamina to be such a fighter, I would be dead now, that's a fact! It's that fighter in me that won out over the autoimmune disease which causes me to rebel even now. I can't help it. It's a part of my tenacious, stubborn personality. I know that when I really need to, I'll line up as needed. In the meantime, I hold out hope my sister will actually commit to donate, and I harass Stanford all the time to re-activate me on their cadaver list. I will be a squeeky wheel.

[MooseMom]

Yep, Sunny...I can see that your stubborn personality has served you well.  I wish your sister had the same fighting spirit so that her hemorrhoids would not be preventing her from donating.   And you know, you just might be lucky and get that transplant before you need D, so I don't blame you one bit for holding out on fistula surgery.  Is there a reason that Stanford hasn't re-activated you?

[Henry P Snicklesnorter]

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[MooseMom]

Yes...practice.  I can see where "being on top" (and staying there!) is a skill that needs to be developed.  HPS, do you ever fall off the top?  If you do, is it easy to get back up?  I'll start practicing.  Thanks for that!

[monrein]

I think I've been very very lucky in many ways with my illness and I think a contributing factor is my attitude which is just a part of my personalty plus events in my life which forced me to grow up fast and made me tough.  I was born stubborn and high energy, and have been through many extremely difficult emotional things in my family of origin which robbed me of a childhood. My Dad was a severe alcoholic stemming from not being free to be the person he really was (yes he was gay and closeted and I hate that society forces some people to hate themselves because of this fact of life) and since my mother didn't drive and we lived in rural Jamaica, I was angry very,very often, was very practical and responsible and scared I'd die in a car accident almost every day.  I also went to boarding school at 10 which provided a respite from worries too huge for a kid and I excelled at school which got a lot of positive attention from some people in my family.  My family lived through tons of violence...my Mum was beaten up and lost a baby at 8 and a half months into her pregnancy, in another incident my Dad was chopped and shot and left for dead in the hall of our home the day before Christmas and I went in the neighbour's car to the hospital with his head on my lap as he kept passing out as if he were dead.  He was tough too though and he pulled through despite a filed bullet that went through his bladder and took out several inches of a vein in his thigh.  I learned a lot about pain that day.   I was 13.  When that was over the decision was made to move from Jamaica, after 10 generations on my Mum's side.  They chose to go to Miami and I refused to go with them since I didn't like Miami which I'd visited as a kid and extremely independent I was ready to be on my own.  At 15,  I came to Canada where I had an aunt and uncle and I lived with them for a year (we had an extra year of High School, Grade 13, at that time and my parents approved me coming here since I'd have started college at 15 in Miami) then went into residence at 16 at university and started living with my husband at 17.  I was 17 going on 60 and he was 23 going on 15 so all in all some kind of balance was struck.  Charmed life for him, mine not so much to that point.
I mention all of this because these are things that have dramatically shaped my view of life, death, pain, love, God, joy, sorrow, as well as the incredible importance of living in (and relishing) or living through (and learning from) the particular moment in time in which I find myself.   I practice observing my body from a bit of a distance, almost like a form of dissociation, and this helps me deal with the physical aspects of this illness.  I would have liked to be a surgeon.
I have a very strong sense of myself but don't think I'm at all important in any grand scheme of things.  I try to be a positive force in the areas in which I do have some influence and I find that a certain approach towards people like medical personnel goes a long way towards a better experience for myself.  I don't think that any supernatural power is out to get me or to protect me.  I don't expect this nor do I find it necessary really.  I don't feel anxious much and I truly believe that if my life ended tomorrow it's been enough.  I get so much sustenance from nature that sometimes I think I might have been a tree or something in a former life except that I don't put much stock in former or future lives either.  I don't think life is fair nor is it unfair really.  We're born into a situation and then circumstances plus our free will allows us to seize opportunities or not, to sink or to swim, to cope and to struggle, sometimes it's one sometimes the other and it's not up to me to judge anyone's way of trying to do that.
My life has seen a fair bit of the ugly side but also much of the beauty too.  I've been unlucky but also incredibly fortunate.  I try to remain philosophical and to control my thoughts and feelings since my experience has shown that many of the things we think we have control over are mere illusions.  I don't hand everything over to "fate" however...I try to learn whatever I can about ESRD and actively do everything I can to maximize my health and minimize damage to my body.  I was born with a very strong will and I use it.  I've had good relationships and have felt genuinely cared about by people.  I do my best to return the favour.

MM, I don't think there are any tricks as such that can be taught but I do think that you'll find out how best YOU can cope, if only because there is no other option but to cope and to move past the dark into the light.  As I see it, ESRD takes much away from us, only we can stop it from taking everything....and that is true for normal aging also.   At the moment, my hands and feet are very painful but as I plant my garden this spring the pain is lessened quite a bit as my projects take shape and today I planted a new japanese maple by myself(Mikawa Yatsabusa to be exact) and I'm writing this as I wait for the evening hours which will be cooler for me to plant as much as I can of all the other stuff I got today at the nursery.  And I say to myself that despite the new pain (prograf arthalgia most likely) at least I have the energy of the new kidney.  Another reason, besides transplant, that I avoid the sun is that my Mum died at 46 from malignant melanoma so no point adding dumb to blonde, as I see it.

Your posts get all of us thinking and I'll continue to read whatever you write as we go along.   

[cariad]

Plus, I have no god, so there is no point in asking "why me?" These are the cards I was dealt in this fascinating game of life.
I will rail against things I can change, but refuse to waste my time agonising about that which I cannot change.

Whoa, I thought I was the only one who had come to this conclusion, Henry. I think this is one of the advantages of humanism/atheism. I see a lot of people take the bad things that happen to them in life personally. Even as a child, I never remember wondering "What did I do to deserve this?" because I just knew it was a random event. I feel bad for the people who think they are actually being retaliated against, and I especially dislike when people hear my story and try to come up with some convoluted, Biblical explanation for why this all makes sense. I am FINE with it. I don't feel picked on or abandoned by a spiritual being.

I wish I knew what to tell you, MooseMom. My only observation from some of your posts is that you seem to dwell on what might happen, rather than just getting through what is happening. (We all do this to some extent, but it seems to be interfering with your quality of life, which is why I mention it.) I could have come down with steroid-induced diabetes, I probably should have severe osteoporosis as I have almost every risk factor, I had a transplant that statistically speaking should have only lasted five or so years - everyone (on earth, not just here) could provide you a list of horrible circumstances that could have befallen them. I guess I would try to stay in the present - not to say don't prepare, but worry is not preparation.

I also think you will get to a place of peace. Good luck.

[Rerun]

When I had my arms mapped tears were just running down my face.  I made myself go but my mind was not there yet.  Thus, the tears!

           

[Henry P Snicklesnorter]

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[galvo]

MooseMom, I truly emphasize with you. I am old, sick and without hope. I know that even the most simple of my dreams will probably not eventuate, such as a few days break at the beach or a final wander around my home town, Sydney. The only person I ever loved is dead. I am alone and lonely. The only reason I carry on is because of my loving cats; if I didn't have them, I just wouldn't bother.

So, fistulas, dialysis and all the rest of the muck is just part of the rotten game. Do you remember the movie "Zulu"? When it looked as though the impis were going to overrun the Welsh troops? A nervous soldier said to his sergeant -"Why us , Sargeant, why us?" The reply from the grizzled old veteran was "Because we're here, lad, because we're here!"

And maybe that's it, MooseMom, we're dealt the cards and it's up to us how we play them.

Good luck to you.

[Stoday]

Oh MM you make life so hard for yourself! You ask "Is it just me?"; I think it is indeed you. You are trying to fight the inevitable. You'll never win! But it's no use telling you to change your mental attitude any more than telling a leopard to change its spots. All I can do is to tell you how I make it easier for myself.

Preparation. When I was about to have my fistula surgery I prepared myself mentally by convincing myself of its advantages. It would be an insurance against having to have a catheter stuck in my neck; it was better than having a tube stuck in my stomach with the risk of peritonitis etc. In this way I mentally welcomed the prospect of the operation. I think that was a major influence in my having a trouble-free experience.

I am also looking forward to the day when I start dialysis. I know that sounds crazy, but I have successfully prepared myself by creating a positive attitude. I like opera and ballet, so I bought a DVD player and lots of DVDs with the object of using it for a few hours every week. I'm looking forward to that because I don't have enough time at present, but I shall have then. I've met some of the the renal team and get on fine with them. In all it will be a big change and a new way of life.

Maybe if you believe in God you could convince yourself that your problems are a cross you have to bear if you are to gain the key to heaven and therefore welcome them. I can't personally vouch for this because I'm certain there is no God.

MM, I hope you can find a way of accepting your lot.

[RichardMEL]

MM every time I read your posts about your problematic fistula and traumatic surgery to creatt it I think to myself (and I have written this before) that I do not think your fistula is right. I have had mine for 6 years and it never pinches or pops or feels like it has a current or anything else like you describe(unless I feel the thrill, which of course you need to do every day to check it). Otherwise it's just there. Jumpy with aneurysms but it's just part of my arm and I don't really give it much thought. It doesn't bother me duing regular days, like now sitting at my desk at work typing. I really think you need to get this re-checked and if the people you see say it's all fine and normal get it checked by someone else, because it just does not sound right to me - at least based on my experiences with my own fistula.

Like Henry I am not religious... I try not to ask "why me?" or any of that.. I'll never get an answer, and I prefer to focus on what I have rather than have not, or to think "if only..." hey in some parallel universe I could be a billionaire, healthy, living on a tropicial island with a harem made up of IHD women (all healthy and with high libidos!!!) but hey, that's a fantasy... it's not going to help me much now to focus on what might be (though that particular one is fun... a pina colada please!!  )

I don't know how to keep positive. I think I just decided one day to always try and focus on the positive side of things. I gues curling up in a ball and feeling sorry for myself or depressed just doesn't do it for me, and I realise that kind of attitude definitely won't help me get anywhere, and probably is worse for my own well being.

I follow a football team that has been starved of success for the last 30 years (no laughing Mr Galvo!) yet I pony up for a membership each year, and support my club even when we have lost every game so far (that's 9) and are the laughing stock of the league. In fact we're so bad that people actually pity the Tiger supporters.. when they should FEAR our mighty club from the glory days of the 60's and 70's (Yes Galvo, remember the 1980 Grand Final? KB sure does!!  ). However I hang in there with the newest rebuild and bunch of kids with hope - the future will be better and brighter, and again the sleeping giant will awaken... well I kind of also feel that way about myself.. I'm just waiting, doing the dialysis, and my time will again come (watch out, ladies!!  ) and I refuse to think that I'm going to sink into a mire (I might feel differently if the AFL had relegation!!! )

Try and hang in there! It's not just you. many struggle with this kind of thing every day. It's not easy of course, but it's also not as bad as it could be - I am very confident of that.

 

[MooseMom]

My only observation from some of your posts is that you seem to dwell on what might happen, rather than just getting through what is happening. (We all do this to some extent, but it seems to be interfering with your quality of life, which is why I mention it.)... I guess I would try to stay in the present - not to say don't prepare, but worry is not preparation.

Guilty as charged.  I come onto IHD to read about others' experiences and hope to learn and to share a word of comfort.  But the sad truth is that all of the horror stories scare me and I become convinced that what happened to this person or that person will, of course, happen to me, too.  I could just stop reading posts on IHD, but that seems dishonorable and I don't wish to ignore others' experiences just because I become afraid.  That's too weenie-ish even for me.

Oh MM you make life so hard for yourself! You ask "Is it just me?"; I think it is indeed you. You are trying to fight the inevitable. You'll never win! But it's no use telling you to change your mental attitude any more than telling a leopard to change its spots. All I can do is to tell you how I make it easier for myself.

This is true, too.  I've learned that I am really brutal on myself, and that needs to change.  I never give myself a break. I don't know why this is.  But I need to start being much kinder to ymyself.

[MooseMom]

Also Stoday, I have made preparations...got a new laptop, a library card and Netflix on PS3 all down in the basement; I've chosen my spot for NxStage treatments when the time comes, so it's really not like fear and anxiety have made me inert.  I'm as ready as I can be, and you are right that there is comfort to be found in knowing you're prepared.
Richard, being positive does make life more fun.  I don't like feeling this way and I am swiftly boring myself silly.  I am thinking that eventually I'll just burn off all of these feelings and will be left with just a small flame that is more controllable.  I think I will take your advice and find someone else to look at my fistula if I can get it approved by my insurance.  And I do understand about supporting crap teams.  I'm no fair weather fan.  My crap team needs my support more than ever, as I see it.  And thank you for telling me it's not just me.  I can't believe I'm the only one struggling.
Monrein, your early experiences would have warped many people and would have twisted them beyond recognition, if not fully traumatized them.  You really have made the most of adversity, and I am working to be more resilient like you.
Truly, though, I didn't want this discussion to be about me.  What I really want to know is if any of you have ever felt, or now feel, like I do. Stoday, did you ever try to fight the inevitable?  Richard, did you ever doubt your ability to continue?  And Galvo...your post is gonna haunt me for a very long time.  Does anyone else feel like Galvo feels?  Is anyone else still in the early, pre-dialysis stage and is trying to find wisdom from the pros?

[RichardMEL]

I understand hearing about some others horror stories can scare you and you can think "oh that could happen to me!" and worry... but I try to not do that - because chances are it won't happen to me (something ELSE will happen to me!!) but whatever happens you deal with it when it happens not worry about something that may never happen. Now obviously you have to temper that attitude with understanding and not doing stupid things - I mean if I ignore my fluid restrictions and go drink a 2L bottle of water like I'd love to do, well I'm clearly going to pay dearly for that.... but I think that's the sort of thing that I can control. I can't control if my fistula fails at some point, or when I get a transplant call, or if I have a stroke, or whatever else COULD happen to me. I can do all i can to keep myself in decent condition so that my chances are the best they can be, but I don't sit here worrying about X Y and Z that could happen.. that would just get me down, and I may waste energy (and higher BP) stressing about something that may never happen. No thanks.. I'd rather waste my energy(and BP) on more important stuff... like girls!!!! 

xoxox

[MooseMom]

Richard, I still think of you every night when I drink from my bedside sippy cup.  Truly, I do.  You've taught me to enjoy certain things while I still can, a very valuable lesson.  In fact, every time I see a glass of water, I think of you.  Gosh, I guess I think about you a lot!

Whenever I see my nephrologist, I do what I gotta do and then get out of there quickly.  I think I need to spend more time in finding out from him which  side effects of  ESRD are controllable/treatable.  I thought I was pretty well informed, but I think I lack information that could actually give me some comfort.

Anyway, thanks everyone so much for talking to me and sharing your thoughts.  You are all such special people, and my God, you are all so PATIENT!  I am always interested in hearing about your feelings and experiences and opinions and suggestions.  I've learned so many valuable things from all of you, and it is up to me to practice what you preach. 

And Galvo, I'm thinking of you...

[KICKSTART]

MM If you get time read some of my older posts , you will see you are not alone , i have had some of the worst treatment possible (while like you say others seem to breeze through it)  I just scream in my head now , im not greatfull to anyone , i hate this (this is after 11 years) to me its torture but im too much of a coward to die ..at the moment. (and im not old)