I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on October 16, 2013, 09:07:45 PM
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:rant; :rant; :rant; :rant; :stressed; :stressed; :stressed;
It will be 15 years of my doing hemodialysis three days a week on November 2, 2013.
I am pissed about it now.
I have been pissed off before but now I am sick of it.
I am sick of the petty bitchy rules the center is constantly telling me about.
I am sick of sitting in a chair for seven hours three days a week.
I wish I had my bed back in the Riverside unit.
I am tired of my hands hurting constantly because of stupid nerve damage.
I have now become hard of hearing in my left ear because of the sepsis from the intestinal debacle in July.
I am tired of being sore constantly everyday all the time.
I am tired of going to KAiser for appointment after appointment.
It has been at least one a week if not two or more. Sheez!
Tired of dealing literally with shit all the time from the ileostomy bag.
It is now sticking to me for at least three days. If we look at it right and put it on right.
I am tired of this getting better and want it over NOW.
I am tired of being tired, tired, tired all the time.
I am sick of how long it takes me to do anything.
Tired of going to dialysis day end and day out without a break in sight.
I can barely sit in that chair for my time now and it was shortened by an hour by the docs.
I am going out of my mind slowly as I sit there and do my time.
I will end up crying on the way out of there or during dialysis.
Noone gets it.
Husband wants to know why I am crying, sometimes I do not know.
I am sinking slowly, slowly into mental quicksand.
I have decided after all these years of being a good patient, it is time to do what I want to do.
If I want off after four or five hours I am coming off when I say so.
If I am there at seven I am off at two exactly whether I use the bathroom once or twice.
These nurses will add time on the machine for bathroom trips, I say NO more!
Enough, enough, enough!
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Hooley Dooley, kitkatz! I bet it was a bit of relief getting that off your chest. I could offer you a swag of useless platitudes, but you would doubtless, correctly, tell me to shove them where the monkey shoved the nuts! Are you on any happy pills? They won't change the situation, but they may make it slightly more bearable. Other than that , I got nothin'. At least the gang here realise that this rotten disease is not only physically debilitating.
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Thinking of you, Hon...
You've been through quite a tornado recently....
Mum would agree with you, by the way!....
Talk to your doc about depression, and about being treated for it... Mum's on Lexapro... Took about six months to find the right one antidepressant, but it's kicking in...
God bless.....
C...
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Yep, the right kind of pill can make things more tolerable for you. You have had a bad stretch of luck, but it is bound to get better for you soon. We are all cheering you on and hope things begin to get better for you. Excellent rant tho!!! You did an awesome job.
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**********EXPLICIT LANGUAGE WARNING*************
DITTO!!!! But only about 13 years on dialysis.
I've tried the "magic depression" pills. There is no such magic trust me. It's all about attitude!! And I don't care who you are after 10 plus years of dealing with all this SHIT ANYONE would be absolutely INSANE if they didn't feel the way you and I do kitkatz.
Look we have tried looking at the bright side for YEARS!! I'm right there with you!! And the money pressure too (not sure if I saw that in your list!).
Your 100% right NO ONE GETS IT!!! The only people that have any idea are those of us going thru it day p*cking in and day p*cking out!!!
I have no idea what will happen over the next few hours, days, months maybe years but I can tell you I'm NOT happy and I don't see any lights at the end of the tunnel. And I'm sooooooo damn sick of people blowing rainbows and sunshine shit and cutesy little p*cking quotes up my ass I could scream!!
In addition if I were to have a complete turn around health wise tomorrow I'm 44 years old--- where would I get a job in this economy???? Prospects are for shit!!
Yes yes I'm continuing. And for me I'm still single (wonder why!) and feel like I'm an outsider in this world.
Kitkatz, you mention being tired too.... Shit I HATE that. Sleep for day(s) sometimes can't sleep at night a lot. My body clock is so screwed up!! It affects EVERYTHING!!!! Miss doc appts and reschedule can't finish anything I start. HATE IT!!
Look I'm sorry to be this way and I'm happy for those of you who seem to cope better than I. I really am happy for you guys. But for me I feel like I'm just existing here on earth for some crazy cosmic joke!!!!
----Geoff
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I get it !!! And I am only a 'caregiver' . Not going through it my self, but going through it with my Hubby !! It is so hard for others not involved with D to understand how your life 'literally' revolves around it !!!!! Hang in there, please.
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Well, then you better tell your family sister because they did everything in their power to keep you alive so you could feel this way.
I have a DNR and my family knows NOT to bring me back from Heavan's Gates just so I can live on dialysis.
You were brought back so you better get things in order because there probably will be a "next time"!
Hope you get a break so you can feel better to enjoy your off days. Sorry to be so blunt!
:cuddle;
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KK, I have no cheerful ditties or hopeful homilies to send you, just a couple of hugs and the reminder that no matter how crap you feel, or have felt, you still manage to give many of us strength and faith in the human spirit's ability to endure crap. I am thinking of you and only wish that I were able to give you a bit of feeling good and peacefulness if only for a short while. :grouphug;
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:grouphug;
I know there's nothing I could say or do to make any of it any better. I can only tell you I care and I'm sorry you have to endure any of this. You've always shows such a great spirit and help everyone here so much that it hurts to hear you're in such pain.
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kitkatz, I've tried imagining what your life has been like over the past few years, and nope, can't imagine it.
Yes, you've been a "good patient" for an awfully long time, and I can't help but agree with your sentiment of "now it's time to do whatever the hell I want." Frankly, I think this is a good strategy. My opinion, for what it is worth (not a lot) is that now you should concentrate on achieving whatever you define as a better quality of life. If it means going to the bathroom during treatment whenever you want and not having that result in more time on the machine, then so be it.
Being mindful of your current situation (which warrants inexplicable crying which I think is entirely explicable, actually), can you come up with a list of small things that you might be able/might want to do to make each day a little bit better? If you look too far into the future, well, it's dark down that particular tunnel. But what might you possibly do TODAY that could bring a smile to your face?
Life is so unfair, and reading your post just makes me so angry. This just isn't fair.
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That's an impressive rant. 15 years is a realllllly long time. I'm so sorry. Keep on ranting.
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All I can do is send hugs. :cuddle; I think when the need to rant stops, we’re all in trouble. Keep on ranting and do what changes you need to make so that things are better for you.
And I'm sooooooo damn sick of people blowing rainbows and sunshine shit and cutesy little p*cking quotes up my ass I could scream!!
Geoffcamp, you took the words out of my mouth. I am so sick of the “positivity” quotes that the next person that sends one, I will slap with a shopping bag full of Jell-O. Last week, I was sent the gem of “I am not a product of my circumstances. I am a product of my decisions.” Obviously, the words of someone without a chronic illness that just decided to happen...
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"And I'm sooooooo damn sick of people blowing rainbows and sunshine shit and cutesy little p*cking quotes up my ass I could scream!!" Geoff
Me too. And I try to stay positive mostly, but this shi* has gotten to me.
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I know this disease gets to all of us. I almost break into tears as I drive in to the hospital most days. Yo feel like a burden on society and to have the VA pay for all my treatments. I want to be a contributing working citizen of this country, but just cannot do it now. I have trouble with my honey do list let alone get a job. I try to stay active hunting and fishing, but that is sort of a joke. I go out into the woods and most days fall asleep sitting in some comfortable spot while waiting for game to come by and wake me up. It has been 5 years, I do understand the hell we go through.
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I don't think we'd expect less then a rant from you, Kitz...
I understand the inexplicable crying.. I've done that too recently.. I don't know why I'm getting so upset.. I know I'm stressed from all the crap I went through (and am still going through) this summer, besides dialysis.. it's to a point now that my hair is falling out.. and I don't have much left to come out these days.. I long for the days when I was a teenager or when I was in my 20s and I had long, thick, curly brown hair.. now it's thin, straight as a poker, and comes out in handfuls..
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I can't do anything but send you some very ineffectual *huggles*, but I'm glad you were able to come on here and get it off your chest so that some amazing people could give you exactly the support you need.
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I DO UNDERSTAND!!!!! :'(
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Kit, if ANYONE deserves to rant, it is you! I can only agree with what Gail said. You have given so much to others. I wish we could in turn give back to YOU!
No positivity being pushed up your @$$. But hugs and hopes that it will be a bit better tomorrow.
Aleta
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Last night dialysis My hands hurt so bad I came off the machine 45 minutes early.
I was crying at dialysis.
Came home and slept the rest of the morning away.
I am having nerve problems in both hands now since the ileostomy surgery.
They say it is from the sepsis. I also cannot ear talking out of my left ear due to sepsis.
This all sucks beyond belief.
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I think I'm going to cry for you. I hope you find some relief soon.
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So sorry, kitkatz. I know how you feel and if there were some way to make it better for you, I would.
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I understand and I think as patients we need to take back control
Nurses can be so casual in their attitude towards our suffering
They need to learn to listen to us
:Kit n Stik; :Kit n Stik; :Kit n Stik;
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:rant; :rant;
And on top of it all I had to miss the IHD.com get together in Las Vegas.
Hubby was not comfortable with me being so fr away from my med help.
I hate this slow recovery time!
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Just sending hugs to you! I wish it could be better.
:grouphug; :grouphug;
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You will get there kit. Hang in.
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I hate this disease.
KK I selfishly want you to live a long, long time.
You are one of the first friends I made on this forum.
It kills me - all you've been through - and still have to go through.
I love you.
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THe plan is to stick around as long as I am supposed to.
I have your jacket still so got to get together soon.
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Well old timer I know how you feel about dialysis :Kit n Stik; just told a surgeon again where to go about my other leg. After 26 years with out a break, + those nightmare 5 years in the 70's. I have started coming off the machine early. Why not its my choice. Fed up of doctors/surgeons who think they know my body better than me. :boxing;
You have earned the right to make any dicision you want, sod the nurses and what they say. Its your live and you body.
My first rant on this site for a long time!
One issed(P) renal patient. >:(
Kevno
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Hi Kevno, glad you are still with us. You are kind of an old timer now. LOL''
:flower;
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Hey Kevno. Hey Rerun. I guess we are becoming old timers now.
I was telling my husband how much I actually hate dialysis now. I cannot catch a break from it.
Every other day whether I want to or not.
Really hate it. It is painful now.
I go in feeling not bad and feel worse when I get off the machine.
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Tiredness creeps into bones.
Sore muscles ache constantly everywhere.
Recovery is a slow process.
One thing at a time,
Stay positive they say,
even though I am crying buckets of tears
over things I feel are important.
I cannot stop the pain anymore
Emotionally and physically I sweat
and I swear silently inside.
Is this my life now?
Constant pain and frustration?
Each day I am making progress
Slow painstaking progress
Inch by inch, sometimes second by second each day
I walk, I talk and act normal
When inside I scream.
By, Katherine Soto October 21,2013
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I AM TIRED OF GOING TO DIALYSIS ... I am ranting TOO !!! I started dialysis in July 2010. I feel your pain, your anger, your apprehension. People – NO ONE GETS IT !! – At the end of the day, for doctors, nurses and dialysis techs – it is just a job for them. I’m 55, just about ready to retire when this frakking thing hit me, shocking my everyday, normal, mundance life to a screeching halt. I do not feel tired – but I am TIRED of going to dialysis 3 times a week with no break in sight. I can’t qualify for a transplant because of a 25% REJECTION FACTOR caused by a damn weak heart !! DAMN, what else. Sometimes I would like to end it. I researched it & it will not be considered suicide if you stopped dialysis treatments. [for insurance reasons] … I still want to grow old with my wife of 27 years – plus we were in the 4th grade when we decided we loved each other.. I would just like to walk into one of the beaches here in So. Cal. & never come back, since I never learned how to swim – been too busy working – my two kids in college are done - I have to find a reason to live – my wife – YES !! but I do NOT want her to push me around in a wheelchair & be a freaking burden .. The gods hate me!! Eveytime I go into the dialysis clinic, I see older people than me & I would wonder “Is this what I have to look forward to?” It SUCKS BIGTIME. I easily gain weight even without eating a damn thing !!! wtfk? I miss playing basketball & especially RUNNING !! - the temporary FREEDOM of RUNNING !!! It’s not you, folks, it’s me – am just going through a mental torture of “what-ifs?” & finalistic scenarios.
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25% REJECTION FACTOR
Did you perhaps mean ejection fraction?
As one 55 year old to another, I would suggest home hemo - still sucks, but much less than in-center.
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Tiredness creeps into bones.
Sore muscles ache constantly everywhere.
Recovery is a slow process.
One thing at a time,
Stay positive they say,
even though I am crying buckets of tears
over things I feel are important.
I cannot stop the pain anymore
Emotionally and physically I sweat
and I swear silently inside.
Is this my life now?
Constant pain and frustration?
Each day I am making progress
Slow painstaking progress
Inch by inch, sometimes second by second each day
I walk, I talk and act normal
When inside I scream.
By, Katherine Soto October 21,2013
:2thumbsup; Keep writing!
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Hello kit
I've only been on PD dialysis for a month , and 15 years is a long time,, sometimes we get ourselves
In such a rut , life become depressing if you don't have anything to look forward too.
Now I'm with kaiser also , they,re really heavy in preventive management, they kind of remind me of a repair shop
You know, your in for a oil change , then they,re selling you ball joints.
They just got me for a Colin inspection last week , and now they mailing a list of test to do.
Now once a month I have to see my PD team which consist of 6 members 1 Doc 2 RN 1 dietitian 1pyh 2 want_a-bees
And I see them all at the same time , looking over stats , progress reports ,
This is what I told them , and I quote " look into my eyes so we don't have a hearing problem ,I love all of you and I think you all do a great job
Get all the reports you want , pin cushion me , cattle prod me , draw blood , but when I go back to work
And you miss something tuff shit "
I'm not living for dialysis and I don't need 6 more wives .
I find we are our own best doctor.
:boxing;
Kaiser has a support group that maybe you can attend , I live in Yorba linda
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Good for you Seaweed. But give it another 10 plus years and TRUST ME you will NEED to let out a RANT now and again.
G.
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Geoffcamp and Kitkatz, I fully understand the comment about rainbows etc. Back in April, I made friends with a woman, also from the UK and we both hae getman shepherds. We bonded quickly and before long she was talking donation and did contact the transplant unit, complete paperwork etc. She seemed to be so keen to support me and find out much about my condition. I don't make friends easily, and I so wanted it to work. I opened up and stopped putting on I'm fine' face. Anyway, I went to the HDU conference and she wanted to come with me. I should have said 'no' but I didn't. Set against this is the backdrop of not sleeping. Well as soon as we got to Orlando, she started to piss me off. I was negative and depressed because I was so damned tired and sleep was even worse while we were there. Well, it got to the point that everything I said was countered with some 'bright and breezy' comment. When someone who has no bloody clue starts this, I get more negative and start snipping at the other person. By the time we got to the end of the conference, we had another two days together at Universal and then the drive back. By the nd, I don't think that we could stand th sight of each other. I haven't seen her sibce, but we had an increasingly bitter text message confrontation. Anyway, I was accused if being negative, she compared me unfaviorbly to other people at the conference, oblivious to the fact that she wad seeing only their public faces. She would not accept that I am chronically exhausted and depressed and burnt out. I have been dealing with this shit for over twenty years. Have geen on dialysis this time atound for over ten years. She told me that I deal well with the physical but hot the mental aspects. How the hell does she know? She has not walked in my shoes. It still hurts and rankles with me.
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I'm so sorry for you Amanda
:grouphug;
Lots,and lots of love, and stay strong
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Geoffcamp and Kitkatz, I fully understand the comment about rainbows etc. Back in April, I made friends with a woman, also from the UK and we both hae getman shepherds. We bonded quickly and before long she was talking donation and did contact the transplant unit, complete paperwork etc. She seemed to be so keen to support me and find out much about my condition. I don't make friends easily, and I so wanted it to work. I opened up and stopped putting on I'm fine' face. Anyway, I went to the HDU conference and she wanted to come with me. I should have said 'no' but I didn't. Set against this is the backdrop of not sleeping. Well as soon as we got to Orlando, she started to piss me off. I was negative and depressed because I was so damned tired and sleep was even worse while we were there. Well, it got to the point that everything I said was countered with some 'bright and breezy' comment. When someone who has no bloody clue starts this, I get more negative and start snipping at the other person. By the time we got to the end of the conference, we had another two days together at Universal and then the drive back. By the nd, I don't think that we could stand th sight of each other. I haven't seen her sibce, but we had an increasingly bitter text message confrontation. Anyway, I was accused if being negative, she compared me unfaviorbly to other people at the conference, oblivious to the fact that she wad seeing only their public faces. She would not accept that I am chronically exhausted and depressed and burnt out. I have been dealing with this shit for over twenty years. Have geen on dialysis this time atound for over ten years. She told me that I deal well with the physical but hot the mental aspects. How the hell does she know? She has not walked in my shoes. It still hurts and rankles with me.
I am seeing a similar situation with a woman I am helping who is being treated for stage 2 plus cancer and having the same treatments and issues I had with my cancer 7 plus years ago. I am the person she prefers to talk to as I dont give her "happy platitudes" . Many people she in her life are giving her the "positive attitude " crap " and it pisses her off. , I dont do that. I have been there and had the same pain, fatigue, diarrhea (severe) and general lousy time she is having. I commiserate with her and remind her she has every right to feel lousy and be frustrated and angry with this. Everyone else tells her to think positive. None of them have had cancer like we both have had.
When she said I "I wont go through this again," , I was the only one who understood this . Everyone else was upset she would think this way. I felt the same way at the end of my treatment. My wife understood. It takes a special person to avoid the "happy face" routine.
With kidney disease and dialysis it is a long grueling fight. I understand feeling burnt out and down on things at times. Its natural and ok. People like the woman you are describing usually have not had anything bad happen to them and are clueless about handling adversity. They spew out platitudes like "be positive" .
At least here we understand.
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Continuation of the ranting....
Seems I am the only patient at my center who use 16 gauge needles. They have to order them for me. The other night the tech wanted me to do 15s. I said no way, go get the 16s. She had to get someone to unlock them from a cupboard in the back. They complain at me because my surgeon told me to treat the fistula gently. Use 16s, no 15s. I am only following surgeon directions. Sigh...
They know I am coming every treatment so why are things not out when I get there....
I am really hating dialysis. I cry going into it some nights and cry coming out of it some nights. My hands hurt every night. I have to go to the bathroom and it adds time to my machine time. I say not fair. Bathroom trips should be a part of the treatment time. Sigh...
The only thing that helps is Tylenol three at 6p.m. to take the pain away and to mellow me out. Sigh...
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:grouphug; :grouphug; :grouphug;
I wish that things were different.
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Thank goodness for T-3!!
:thumbup;
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My heart goes out to you.... :grouphug;
I wish there were something to do. It is frustrating to see someone suffer and have no way to help.
Your writing is evocative. Painful. Beautiful. Don't stop.
xoxoxox
Aleta
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I am very sorry and wish that things were different.
Kristina. :grouphug;
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Love you kit. Rant away. We do understand.
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Kitat, we know how difficult dialysis is, however, your time and strength on dialysis is a Big motivator for me. Hang in there and it good to let your feelings out. Sometimes I want to throw my cycler out the window. You give me a lot of hope.
Debra
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Kit, I know you are well versed in the ways of dialysis , unlike myself who is a newbie. Also, just the few years I have known you, you have been in some very serious troubles. I cant imagine how you keep carrying on, but you do, despite the problems. I sympathize with you and hate to see you hurting, physically and now, emotionally. Have you tried maybe some kind of "happy pill" I take celexa every day, and when I decided I didn't really need that, I tapered myself off until I had been without for a couple of weeks, and then I realized I was a screaming maniac at a red light. And, of course, the one who got most of the crap dumped on him was my DH. So, yeah, I guess I will stay on the pill. Can't hurt, might even help you.
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Wow! Kit! If anyone is allowed to rant, it's you!
I haven't been on D nearly as long as you but you were one of the first to welcome me when I found IHD.
Rant away dear friend! Hang in there because I still haven't been able to make a Las Vegas meet yet, and I have got to "formally" meet you!
Shall we try for next year?!
Love you Kit! :cuddle;
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I have been taking an anti depressant pill and it is working pretty well.
Hubby says he see ups and downs in my moods.
Poor hubby. He never knows when he will get a weepy wife now.
I have managed not to have a crying session after dialysis for the last two weeks.
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Baby steps. Good job!
:waving;
Rerun, Moderator
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Well done, and keep going girl
:cheer:
Lots of love, Cas
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I see the surgeon tomorrow morning. Start planning the put together stuff.
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Revision surgery is set for January 16, 2014.
Surgeon will schedule heart ultrasound, enema contrast test, med clearance,anesthesiologist meeting, and preop.
Hope to get it all done by January.
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:2thumbsup; Still moving forward! Forward is good! I know the last thing you want to is more surgery but as you said this is the putting it back together stuff, at least they're done deconstructing!
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I'm firmly of the belief that always looking at the bright side can cause flash burns on your retinas...
Too many hearts and rainbows and you end up snow-blind from staring at the unicorns.
Hang in there, Kit! Use the big stick as needed.
:Kit n Stik;
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:cuddle; Hope you have a nice Christmas and birthday! :flower;
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Holy Smokes! Barium enema today. I am glad I did not eat this morning. I would have barfed all over everyone. The enema was not bad just flushing from the system took awhile. My colon was not happy. I came home and took a nap and rested on a heating pad for a few hours. Still nauseous, but lately that is the way it is.
I also went for blood work three sticks and they called for a vampire from the main lab. Fourth stick was a winner for blood work.
I have a cyst biopsy on Monday. Last biopsy sucked rocks, so not looking forward to this one.
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Oh, man. It sounds like you need lots of Poppy's *huggles*!!!
You are such a trooper. :cuddle;
Aleta
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Ugh. Methinks you need a warm blankie and a Bab5 marathon!
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Last night dialysis My hands hurt so bad I came off the machine 45 minutes early.
I was crying at dialysis.
Came home and slept the rest of the morning away.
I am having nerve problems in both hands now since the ileostomy surgery.
They say it is from the sepsis. I also cannot ear talking out of my left ear due to sepsis.
This all sucks beyond belief.
hi kitkatz hang in there my hands are paining me the last 9 months doc keeps asking me is it in both hands only telling him that for the last 9 months , nothing to fix the problem , this dialysis sucks loads i started doing 5 days in center when i started 2 years ago , seems a lot longer i cry all the time aswell never done that in my life . I put it down to this illness and the bloody pills the boat load you take 4 times a day 7 days a week . I also think my hearing is going in the left ear and i havr developed a limp out of the blue , i hope you feel better real soon bye for now kitkats lots of love and luck for you. :thumbup;
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I had the biopsy today. Oh what fun. The biopsy itself was not too bad. A few sticks of numbing meds and then a few clicks of taking the biopsy itself.
No real pain until several hours later. I woke up aching in the area worked on.
Tomorrow med clearance appointment.
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Biopsies are true nightmares. Take good care of yourself. :grouphug;