I am going to RANT

[Rerun]

You will get there kit.  Hang in.

[okarol]

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.

[kitkatz]

THe plan is to stick around as long as I am supposed to.
I have your jacket still so got to get together soon.

[kevno]

Well old timer I know how you feel about dialysis  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.
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

[Rerun]

Hi Kevno, glad you are still with us.  You are kind of an old timer now.  LOL''   

     

[kitkatz]

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.

[kitkatz]

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

[E. Messer]

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.   

[Simon Dog]

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.

[okarol]

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

  Keep writing!

[Seaweed]

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.
 



Kaiser has a support group that maybe you can attend  , I live in Yorba linda

[geoffcamp]

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.

[amanda100wilson]

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.

[cassandra]

I'm so sorry for you Amanda

       


Lots,and lots of love, and stay strong

[obsidianom]

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.     

[kitkatz]

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...

[monrein]

    

I wish that things were different.

[Rerun]

Thank goodness for T-3!!

         

[willowtreewren]

My heart goes out to you.... 

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

[kristina]

I am very sorry and wish that things were different.

Kristina. 

[thegrammalady]

Love you kit. Rant away. We do understand.

[Wat76]

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

[Jean]

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.

[CebuShan]

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!   

[kitkatz]

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.