a different way that works

[jdat]

Wow

Can anyone say " let them eat cake " ?

In all honesty this website while it is also a big venting area has always given me great laughs. Don't go thinking we are all here crying all over ourselves.

Because of this wonderfully easy to manage disease called ESRD I was lucky enough to have to drop my whole life at age 22, move to a different country and have to live again with my parents.
 I was unable to support myself anymore because of having to go to outrageously expensive for profit doctors and hospitals appointments.

At this stage my whole life is at a halt ..... so really why should I love ESRD and dialysis?

I had plans for my life that now I am unsure if I will ever be able to accomplish them ( living in Asia among other places ) because I will always have this issue of taking care of myself and health insurance etc ..... YEAH LIFE ON ESRD MAKES THINGS SO MUCH EASIER!!!!

Go back to that castle of yours.


I seriously wish I had never read your message so it wouldn't have reinforced in my mind this gap of the US ( seriously ill people ) versus THEM ( clueless people who are condescending on ill ones ).

[Bajanne]

Man, you sure can express yourself.  WITH YOU ALL THE WAY!!!

[twirl]

Hi,
I cannot believe (hence my name) how many of you have bad experiences with dialysis. My husband (who also happens to be a physician) is a dialysis patient since 1991. He too, suffered from physical problems as a result of infrequent dialyis at a clinic over 40 miles away. He had to travel before dawn to get there, dialyze and return so he could get back to his very full time job.
After searching and not giving up, he now dialyses in the comfort of his own home, while working at his computer and continues to work full time and then some.
Oh, and he is a doc who spends time with his patients so I am sorry so many of you have docs who don't spend time with you. Some of these "high paid" docs don't get much as reimbursement for your care-however. Medicare is not a big spender and Medicaid even (much) less. Socialized medicine and all.
My husband is much better off doing his daily home treatments of 2-3 hours. (he doesn't miss a day believe me) His health is great and since he is a vegetarian and strict with his diet, he does great.
Perhaps you all need help in finding better solutions to dialysis. Life is what you make it and perhaps you need to take charge. Why settle for a less than adequate doctor if you don't think he or she is spending enough time with you. Get another one or tell that doc the way you feel! Improve your diet if you need to. God helps those who help themselves, etc.
We just took a trip to Mexico-dialysis and all! Stayed in a beautiful home and my husband took his supplies on the plane and enjoyed the trip including a 3 day business conference!
So all of you who "hate" and need to "vent"--why don't you just be grateful that because of dialysis--you are alive to tell about it. There's always a better way and my husband found it and keeps busy enjoying the freedoms he has and his liife WITH dialysis. God bless you one and all.
P.S. Bring those nurses some flowers!
P.P.S. reply and perhaps we can help you find a better way!    dialysis@yellowstonegetaway.com

I read this old post and it make me sick.
I am extremely proud of the comments IHD made;
when her arm looks like mine; then we will talk.
when she is so thirsty she's thinking about ending it all
we will talk
when she is too tired to go to Mexico
we will talk
when her bottom is numb only after the first hour with three hours left             
we will talk
and this is for the mormon bitch

[Psim]

She made me really mad too! But hey, Twirl, I have some good friends who grew up Mormon -- folks who really go the extra mile for others and try not to judge. I don't think her religion (whatever it may be) had anything to do with it. There are probably some Mormons here on IHD -- kidney disease is no respecter of religions. I really wouldn't want them to feel put down. As for the rest of what you wrote -- Rant on, sister!!! I'm hearing you!!

[IrishGirl]

What a self righteous bitch. That was the nastiest most condescending thing I have read yet. This woman and her wonderful life and her relaxing trips to Mexico and yada yada. What the hell was that?
She and her perfect little life And her perfect husband with his perfect job and all of these people on this site just whining about their lot in life. Who the hell is she? I love people like this. It makes me realize just how grounded and  SMART I really am. When people are this stupid, it makes the rest of us whiners look like rocket scientists, yes? Twirl,  you are totally right. When her arm has more needle marks then hair follicles and she is too tired to walk into the next room, then she can talk about it with you. Until then, she needs to visit a different website. How about "my world is rosy and my head is up my ass . com?

[mikey07840]

Wow. I read the original post today for the first time. My head spun around like Linda Blair.

Yikes.

[flip]

and I thought pricks were something you got at the dialysis center

[Sluff]

As you can tell this poser I mean poster only posted 2 messages and hasn't been back since April 2006.  I wonder how her perfect little life is going. My guess is the Doctor(husband) has kept her in a bubble.

[twirl]

Please read this.... not Mormon, but moron as in idiot

I am so sorry and embarrassed and ashamed.......... I did not mean to insult anyone.......

I this case, I am the moron......            and


Edited: Fixed italic error - okarol/admin

[Psim]

  Oh Twirl, you are the greatest. Please don't be too embarrassed -- you gave me the hugest unstoppable right-from-the-belly laugh I've had in weeks. As much at me and my oh-so-serious please-let's-not-be-mean-to-each-other reply as at your typo. You've definitely made my day!

[MyssAnne]

Wow. This is the first time I saw this posting. I am shocked and appalled at this "lady" (notice the quotation marks!) who would
DARE, on this site, criticize us, without any background.  It would be interesting to see what her life is really like, without the
prescription antidepressants she must be taking. She HAS to be taking some, to be so doggone POSITIVE!!!!!

[kitkatz]

Excuse me....
 

[MyssAnne]

Thank you Kit!!! You always have a knack with that stick!!!

[paris]

She lives in a fantasy land.    When I first joined, I felt I needed to take time to get to know people and the style of the boards.  She just jumped in and thought she could tell everyone what to do and how to deal.   Her life must be full of rainbows and butterflies!  Maybe if I lived on a doctors salary, I would be chipper too!   I think her husband does not share all his true feelings and keeps her sheltered.  My

[Ken Shelmerdine]

I hadn't read this post before. How dare she, the patronising pompous cow. Here's a suggestion of what she should kiss 

[kellyt]

I was disappointed to see this was originally posted two years ago!  I'll bet 10 to 1 (whatever that means) that she still checks in regularly to see what's going on.  So this is for her...


"Hi dumbass!      So happy to hear you and your husband enjoyed Mexico "dialysis and all".  By the way, what did you do while he was hooked up to his machine?  Shop, nap, watch TV, work-out, run up and down the beach, eat your most favorite food, enjoy a cocktail, maybe some chocolate....    My heart goes out to your husband, but you can eat my shorts.   

[Charlie B53]

As usual, I am very late getting to this thread.

Very rarely am I at a loss for words.

Reading the initial posting left me speechless!

Is this lady totally blonde?  Has the bleach burned into her brain?

It is hard to try to imagine someone so cold, without the slightest empathy for patients living under a death sentence.

Does her husband really think he is doing her a favor by not telling her the truth about our disease?

Some day reality is going to slap her right in the face, hard.  And I'd bet then that she won't have a clue how to handle it other than to take a handful of mind-numbing drugs and stay locked away from the rest of the world.

[myporkchop]

I am new to this forum, and have just done my introduction and came across this intro...this makes me really upset (cannot believe).
You should be ashamed of yourself. You have hurt a lot of people. We are fighting for my Mum's life right now, and weighing up if dialysis will save her or cause her more complications.
Really upsetting.

[kristina]

Hi,
I cannot believe (hence my name) how many of you have bad experiences with dialysis. My husband (who also happens to be a physician) is a dialysis patient since 1991. He too, suffered from physical problems as a result of infrequent dialyis at a clinic over 40 miles away. He had to travel before dawn to get there, dialyze and return so he could get back to his very full time job.
After searching and not giving up, he now dialyses in the comfort of his own home, while working at his computer and continues to work full time and then some.
Oh, and he is a doc who spends time with his patients so I am sorry so many of you have docs who don't spend time with you. Some of these "high paid" docs don't get much as reimbursement for your care-however. Medicare is not a big spender and Medicaid even (much) less. Socialized medicine and all.
My husband is much better off doing his daily home treatments of 2-3 hours. (he doesn't miss a day believe me) His health is great and since he is a vegetarian and strict with his diet, he does great.
Perhaps you all need help in finding better solutions to dialysis. Life is what you make it and perhaps you need to take charge. Why settle for a less than adequate doctor if you don't think he or she is spending enough time with you. Get another one or tell that doc the way you feel! Improve your diet if you need to. God helps those who help themselves, etc.
We just took a trip to Mexico-dialysis and all! Stayed in a beautiful home and my husband took his supplies on the plane and enjoyed the trip including a 3 day business conference!
So all of you who "hate" and need to "vent"--why don't you just be grateful that because of dialysis--you are alive to tell about it. There's always a better way and my husband found it and keeps busy enjoying the freedoms he has and his liife WITH dialysis. God bless you one and all.
P.S. Bring those nurses some flowers!
P.P.S. reply and perhaps we can help you find a better way!    dialysis@yellowstonegetaway.com

... I have read it once and then I read it again... and I am still completely speechless !!!!
... And now I have to recover from reading it all ... 

[kristina]

P.S Did I hear anyone say: " let them eat cake " ?

[LorinnPKD]

I find Cannot Believes' original post as tone-deaf and reprehensible as the rest of you, but posting personal information online (even if it's publicly available) is considered doxing and is frowned upon on most internet sites.

http://patch.com/massachusetts/malden/what-is-doxing-yes-it-is-illegal


- - -

Edit: Post with personal information was removed.  Thank you KitKatz!

[beckums70]

I might be in the minority here, but I don't hate dialysis. 

Because of it, I am alive to see my youngest child grow up.  I got to be a grandmother and am going to have another grandchild soon.  I lost a lot, but then lived to regain so much more.  Because of PD I am living my life as I would even if I weren't on dialysis. 

To me it's worth the minor inconveniences of doctor visits and monthly labs where my nurses can't find a good vein to draw blood from.  It's worth all the extra garbage I produce doing PD.  It's even worth the hassle with Baxter over delivering my supplies when I'm actually not at work.  It's worth some drain pain here and there and it's even worth the occasional day when I feel kind of cruddy, because I know without it, I'd feel cruddy all the time or be dead.

I think the OP makes some good points, if in a rather condescending manner.  We can focus on the bad parts of dialysis, and there are LOTS of them for any modality you choose, or you can focus on the life you still have because of it.  I'm grateful for the medical advances that have made dialysis possible.  Imagine if we were stricken with ESRD before they days of dialysis?  None of us would be here to complain.

It's true that no one can understand exactly what we go through unless they've been there themselves.  Many dialysis patients don't share their struggles with the people closest to them and I suspect the OP's husband might not exactly share all his thoughts and struggles with his wife.  Most of us don't want our families to worry or fuss over us so we save our rants and gripes for a place like this where we can safely say what's on our minds without scaring our families.

I don't think this lady meant to come off as rude or critical.  Her suggestions were valid.  If your doctor isn't spending enough time with you, speak up.  You have to advocate for yourself when you are seriously ill because no one else is going to do it. 

I had one doctor who filled in at my clinic that I really disliked.  She didn't spend but about 5 seconds with me, and would launch into questioning me about why I needed pain medication when I'd ask for a refill of the same medication (same dosage for the last 3 years) I have been on forever.  She made me feel as though I were a drug seeker.  I complained to my nurses about her and asked that they not schedule me on any clinic day when she was there.  Apparently other patients complained as well because she's no longer working at the clinic. 

Doctors are paid well, whether they work at dialysis centers or hospitals or in private practice.  It's a fact of life.  However, being paid well doesn't mean they are negligent or are trying to pad their bank accounts by keeping us sick.  There are corrupt people in every business, but making our doctors our enemies is not a good strategy when we are already dealing with such an overwhelming illness.  If you have a bad doctor or a corrupt doctor or a dialysis center you don't trust, please, seek another doctor or clinic.  You do not have to suffer through bad care.  Advocate for yourself as much as you can.  The OP was right in that Medicare and Medicaid do not reimburse at rates as high as most people think.  They do reimburse well, compared to what most of us make, but when you consider that their reimbursement covers supplies used for treatment and even certain bundled medications some of us take the amount left for salaries for nurses and doctors is much less than it appears.  Do they make good money?  Yep, they do.  That doesn't make them criminal or conspirators in some grand scheme to keep everyone sick and on dialysis.

Positive thinking has its place but it doesn't take away the very real struggle or the reality of what this disease does to our bodies.  It's okay to be angry.  It's okay to be sad and frustrated.  We wouldn't be "normal" if we weren't sometimes discouraged and pissed off.  We got a raw deal here and it sucks.  There's no great treatment option for us yet, but there are scientists and doctors out there who are still working on it.  I hope they figure out something soon that will give us all some hope of life without dialysis or even transplant. 

[kitkatz]

Why are we all getting our panties in a twist over a post from 2006?


Personal Information removed.

kitkatz,Admin

[supertramp1228]

Seriously i was burst into laughter when i heard someone said "i love dialysis"this is absolutely rediculous bullshit.tell u what.i was living in Wales in the past 7 years and i came down with kidney disease there.i was so fecking scared so i search by a chinese website and been contact with a herblist.what he told me is kidney failure is just a piece of cake for him to solve down as long as u came to my hospital.and stupid me pack my bag fly to china.then what happened to me was there is a fraud of 100k chinese RMB trap waiting for me.in that case.i became a oversensitive person.so that taught me is dont trust a doc so easily.