GOD I HATE THIS ILLNESS!!

[sickofbeingsick]

  I can't stand what this illness does to us...the loneliness, the depression, insomnia, pain, discomfort, body image worries,  low libido and all the OTHER medical problems that come with ESRD. And let's not forget the worst part of it--the uncaring, insensitive JACKASSES at the clinics who call themselves "caregivers." What a joke. One tech actually told me "I can't believe you're complaining about running 3 hours." Excuse me?! You don't have the balls to sit in this chair and go through what I go through. This illness affects every single part of your life and it is the hardest thing we will ever have to deal with. Not to mention what it does to your body. I lost 20 lbs IN SIX DAYS in the hospital when I was diagnosed. Do you know what that does to a woman's body? Anyway--I'm sorry but I'm having ANOTHER crappy day and just had to vent. Oh--one more thing. I love this website but I'm starting to think it was a mistake joining. I hate seeing the effects of this illness on everyone--all I do is read everyone's posts and cry!!

[Lori1851]

  to you!
My  son Hated his disease too!!! Take one day at a time. I will be praying for you!!!


Lori/Indiana

[Mizar]

It does affect every single part of your Life, but all the People on here know that, they have been through it. My Husband and I have close Family Members, who are concerned, but have never taken the Time, to learn more about this Disease. They don't understand. Please don't leave this Site. 

[okarol]

  Anyway--I'm sorry but I'm having ANOTHER crappy day and just had to vent. Oh--one more thing. I love this website but I'm starting to think it was a mistake joining. I hate seeing the effects of this illness on everyone--all I do is read everyone's posts and cry!!

I am sorry you've had a bad day! 
Many people here are doing okay - some days are better than others - but this is a very tough bunch of people.
I hope tomorrow is better SOBS - take care.
 

[Rerun]

Yeah, it sucks but it helps to come here and have that feeling validated.  If you talk to people on the outside who don't understand they will tell you to have a "positive attitude" and things will get better.  Come here and get the truth, vent and then go about your life.  It makes me feel better anyway. 

                                         

[twirl]

I feel the same way you do.... the words could have been my own.... but I stay on 4 freakin' hours.... low libido is a very difficult one..
my husbands takes it as a personal threat against him..... which is not the case..... but I can not explain it to him so I pretend...... and the no engery is hard..... "No, I do not want to ride bikes along the Galveston strand." ( not only no but sh-t no) I read the posts and cry also and then I thank God for the people here who give me stength, courage and understanding... and laughter..thanks guys

[PD Wife]

I'm a caregiver and my heart goes out to all of you.

[paris]

You are in good company here.  It helps me to see others living and doing even if it is at a different level than before kidney disease.   Some members are real inspriations and help me cope. 

I told Okarol and Vandie at Susie's funeral that I didn't want to make any more friends because it hurt so much to lose them.  But, then I wouldn't have met Chris,Jess21,Flip, Alene and Rolando and I would be missing out on knowing such good friends.  Without this site, depression would have won and kidney disease would own me. 

Please keep posting, we are all here for you.  We can be pretty silly some days and someone always makes me laugh.  Lean on us.  That is what this site is all about.

[Sluff]

 

[peleroja]

Don't hold anything back, sick, tell us what you really think!!!!!  I really think this is the best place for you.  Who else would understand all the crap you're going through.  Just as there are some stories about being miserable, there are equally as many stories about successful transplants, graduating to PD cyclers from doing many exchanges a day (I was doing 6 exchanges a day prior to going on the cycler).  And, yes, i can relate to the hemo as well, even though I was only on it for 3 months.  It was their total lack of caring that cemented my decision to go on PD instead.  Keep on coming back and we will keep giving you hugs, warm fuzzies, white light, whatever else you need.     I just love that bunny!

[kitkatz]

Seriously, tell us what you really want to tell us! 


But then here we all are and life has a way of going on and on.

[RichardMEL]

SOBS hun it's ok.. we feel your pain....

but hey it could be worse.... I do 5 hours!!!!!!! 

Yeah some staff can make you feel like they forget this is an terminal illness you're dealing with... I guess they become a bit jaded and it's the day to day for them and they forget... but I want to say all the staff in my unit are fantastic without exception... they mix humour with support and I know they honestly care about us!! So I must be in a good unit and I feel lucky...

so SOBS just come on down here.. we'll look after you (hmm am I flirting now? 

[thegrammalady]

(hmm am I flirting now? 

richard just can't help himself, but he's a big part of ihd charm and we all luv him. rant and rave when you need to we're all glad to "listen"

[Loretta]

Hey sick of being sick,
I hear you!  I could have written that post!!  I really do hate my life right now.  Just one complication after another.  The loneliness is he worst for me.  I have an Aunt and Uncle that live a few miles away and they have been very supportive and have helped me out in many ways.  It has been hard on my Aunt but she has finally learned that the problems don't go away, they keep coming back or they just stay no matter what I do about it.  I am also in an excellent church group and many of them have helped me many times, but the loneliness just never leaves for long.  I am moving in about a month.  I have a Mom and several brothers and sisters in southwest Salt Lake City Ut.  But I know that even though being closer to them, and living with my Mom and one of my brothers the loneliness will still be there but hopefully not as bad.

I hope your venting helped.  I also hope that knowing that others have a hard time dealing with it helps.    I am sending you wishes for some comfort.

Loretta

[twirl]

SOBS hun it's ok.. we feel your pain....

but hey it could be worse.... I do 5 hours!!!!!!! 

Yeah some staff can make you feel like they forget this is an terminal illness you're dealing with... I guess they become a bit jaded and it's the day to day for them and they forget... but I want to say all the staff in my unit are fantastic without exception... they mix humour with support and I know they honestly care about us!! So I must be in a good unit and I feel lucky...

so SOBS just come on down here.. we'll look after you (hmm am I flirting now? 

I just wanted to get the  I do 5 hours!!!!!!!!!!!!!
Why I like this place---- or another reason why
RichardMel loves his cat but he always has a positive word to say
always looks to the better side of things
me, I am the opposite
so it is nice
to have him around IHD

[twirl]

I have been here too long this morning
  it is 4:46 am
let me see, what excuse will I use
the truth
I was on the computer with people who know how I feel this morning facing long hours at D

[RichardMEL]

ty for the compliment twirl... but this thread isn't about me...!!!! I now have my own thread it seems!!! LOL

but seriously I TRY and stay positive and look on that side... I mean I figure what's the point of being depressed and looking at the negative stuff? It's not going to help is it? Not that I hop, jump and skip into dialysis for another 5 hour run (hmm though given the olympics are coming up that might be an idea... triple jump into the unit..... or maybe not!).

It's NOT always easy at all. I do my best though because I find having a sense of humour helps a lot.. specially in the unit.. it helps lighten the mood a bit and if you can have a few minutes telling a story or having a laugh.. well that's a few minutes you're not thinking about the needles and the machine and all that.

Besides, how can you flirt when you're down??? 

[jbeany]

SOBS, sometimes a good cry is the best medicine.

Like everyone else, I do know what you mean.  These days, I'm just tired, tired, tired. I've just found out that I'm losing my primary insurance in a couple of weeks.  I'm looking at the possibility that my transplant hospital will put me on some kind of hold until I can work it out, and I haven't a clue how this will affect the cost of my actual dialysis - I'm not out of the coordination of benefits period yet.  I've got a million calls into different people trying to figure something out.  One of my friends asked me, "Worst case scenario, what happens?"  The answer is, of course, that if I can't afford dialysis then I die.  I'm so stressed and exhausted right now, that doesn't even scare me anymore.  If one more person pats me on the head, and twitters that I should stop worrying and everything will work out fine, I'm gonna clock them.  I'm trying to keep that positive attitude going, but it's getting harder and harder.

[kellyt]

Hang in there, Sick.   (easy for me to say, I'm predialysis).  Sorry.

You have my email and you can use it to rant anytime.  It won't be long now until I fully understand your pain.  Then I'm going to need YOUR email!   

[devon]

Thanks for saying it better than... well... I don't know who.  But, thanks for saying it.

I haven't started Dialysis yet.  I've managed to push it off so far.  It's just a matter of time before I get to join you.  I hope misery loves company.  We'll have a lot of both!

-Devon

[KICKSTART]

I think maybe a touch of depression is creeping in here ? Dont be suprised it gets us all sooner or later. I have always coped with whatever this illness threw at me (and alone) then i found my emotions all over the place . Talk to your neph about how you feel ( i did) and maybe try a course of anti depressants, they do seem to help !

[monrein]

Please stay with us and rant anytime you want to.  You know how many of us here really "get" what you mean, and even those who manage to stay pretty upbeat most of the time have the dark moments at various times.  The blues, as well as actual clinical depression both come with the dialysis, ESRD territory so if there's someone on the medical team you feel comfortable with perhaps you can ask about talking things through.
I'm sending you a bunch of big hugs and hope that today isn't as bad a day as the day you posted.

[funnygarcia]

As hubby would say:
 Been there, done that.

Some days are worse than others. Hope today or any other day of the month (year?) is better for you.

And yes, people outside of the kidney world have no freaking clue --


pat pat pat is what you get


when all you want to do to them  is   

My family and friends think it weird when we laugh, and throw some sarcasm out there,  with each new bump in the life of kidney failure.
But what else do they expect us to do? Crying doesn't make it go away-- so we beat it into submission and laugh away the worries.