Been advised against this site ...

[MattyBoy100]

Hi everyone,

just letting you all  know that since I started using this site, the nurses and staff in my unit have advised me to stop!!!  They say I will make myself paranoid but I think it`s really cos I`m armed with information when I seek answers from people about my condition!  An example is when I asked about spots on my neck, all I got told was is it`s spots and to wash more.  But I put the same question to this site and was told it`s toxins being released from my system and will settle down in time.  I informed my unit of this and the nurse said yes, it`s toxins coming out of your system.  Now, why couldn`t they have told me that when I first asked?

[Zach]

There has always been this school of thought from the medical community:  A little knowledge is bad.     

[Sara]

Probably either because they think patients are idiots and can't understand medical explanations, or they didn't really know themselves.

There are some (a lot) of medical professionals that are going to feel threatened when you educate yourself.  Don't let that stop you.  Just be sure and consult with your doctor before you make any medical decisions/actions.

[Bajanne]

I am really surprised to hear that from your nurses and staff.  Is it that they haven't checked it out themselves?  Maybe just the sound of the name is their problem.
Maybe you need to invite them to check it out and to register.

[goofynina]

Probably cuz because you know a little more than they think you do, THEY are the ones who feel stupid now.  You should advise them to come check out the website and maybe they can learn a little more as well. 

[Mom3]

I'm curious> did they advise you against just IHD or against all the self help self education sites?

Mom 3

[Epoman]

I'm curious> did they advise you against just IHD or against all the self help self education sites?

Mom 3

I am pretty sure it's just our site, because of the name. You know the old saying "don't judge a book by its cover"  But it's ok because for every 1 person who thinks this site is to negative and will never give us a chance and come check us out, there are 5 other people who will and see what we are really about. 

[MattyBoy100]

They advised me against this site.  It`s where I get most of my information now if I need to know something that hasn`t been properly explained to me at the hospital.

[John S.]

The medical establishment will do everyting in their power to have you use their resources so they can keep you as a customer. Customers mean money.
john

[Python]

We are in the UK and have the NHS.  The government and pharmaceuticals hold the purse-strings.  They don't like people knowing about their condition whatever it is and because people have places like this they can come to for information about their condition they are now in a position to question doctor's decisions, medication etc.  It was thanks to a website such as this (for another medical problem) that my husband is still alive.  He had a major heart attack 2 1/2 years ago and was put on some medication.  They gave him another and I noticed within a day or two that it was having an adverse affect on him (we wives notice these things).  I did a lot of research on it and told him he would be wise to go and see his GP and discuss stopping this particular medication.  He didn't and a few months later ended up in hospital in the A&E (ER).  The doctor there went absolutely ballastic when I reeled off the drugs he was on and said he should never have been put on it.  Fortunately, it's a drug that only stays in the body for a maximum of 24 hours.  Next day, he was right as rain.  He made an excellent recovery and does not use any drugs now but had we not been educated it would have been a different story.

People are now in a position to learn so much about their conditions that if there is a problem, they are more likely to seek legal redress through the Courts - and be in a much stronger position to win.  That is the main reason the medical profession don't like sites such as this.  One doctor actually told me he would be happy to see all medical sites banned from the internet

The days of "doctor knows best" are long gone - and not before time.

[Panda_9]

Being both a nurse and a Dx patient, I partially agree what the nurses have said. I don't agree with what they said to Matty about his "spots" though, that is just unprofessional. I don't think anyone on here will agree with me but I can handle that. I'm not directing this at this website, as I think this is a great place for talking to either other. I do believe you can know too much. It is very important to educate ourselves about our illness, but sometimes there are things we don't need to know in order to keep our sanity. We also need to remember that this site should not be used as a substitute for medical diagnosis. Always always seek medical advice if you are unsure of something. The reason I am saying this is because I am currently suffering of "knowing far too much". I'm not at all joking, I am seriously having a very hard time dealing with it. I'm getting increasingly depressed and anxious, which is partially due to knowing too much. The reason why Ive tried to educate myself so well, is because I eventually would love to work in the dialysis field. However, I am now constantly worrying about things I shouldn't be worrying about, and becoming overly paranoid about things that I shouldn't be.

[Python]

Amber.  There are people - like me, who want to know everything there is to know about their illness, it's effects, what can be done about it etc.  I'm one of these people who, if I don't know about the problem, my imagination runs riot.  If I'm clued up on the subject it then becomes less threatening and therefore although apprehension might still be there, fear is not.  I just feel personally, that if I know about something I can meet it head-on.

There are some people who would rather not know and adopt the "ignorance is bliss" attitude which would be fine for them.

I think it is very much an individual thing to each person and everybody handles things differently.

[Panda_9]

I totally agree with you Python. Its kind of hard to explain what Im trying to say. I certainly dont have an ignorant attitude, and I do want to know things. With me, I am worrying about things that wont happen. I just get carried away with my imagination thinking what if this or that happened. I dont know how to explain it really. But I do know I know too much, and get fixated on things I shouldnt be, and spending all my time worrying about these things instead of enjoying things without shit clogging my mind that doesnt need to be there.

[Python]

That's an easy trap to fall into Amber.  I was once given a piece of advice from a friend many years ago:

"If you worry you die
If you don't worry, you still die
So why worry?!"

Another thing my Mum always used to say was "What's before you, won't go by you".

It's so easy to dwell on the negative side of things instead of the positive, good things.  So easy to let things overwhelm you.  Sharing how you feel is one of the most positive things you can do

[Black]

Amber.  There are people - like me, who want to know everything there is to know about their illness, it's effects, what can be done about it etc.  I'm one of these people who, if I don't know about the problem, my imagination runs riot.  If I'm clued up on the subject it then becomes less threatening and therefore although apprehension might still be there, fear is not.  I just feel personally, that if I know about something I can meet it head-on.

There are some people who would rather not know and adopt the "ignorance is bliss" attitude which would be fine for them.

I think it is very much an individual thing to each person and everybody handles things differently.

Couldn't have said it better myself, but my husband is a little like Amber and I have to dole out the information as he needs it.  He occasionally asks me questions and is actually getting much better about quizzing the medical professionals.  Generally he trusts me to keep him informed of what he needs to know.  We've been married a long time -- will be 26 years on Sept 8 -- so I'm pretty good at discerning when he's ready for more information, or when a situation is coming where he will need more information.

But, back to the original post -- all good doctors want educated, informed patients.  In fact, IMO, everyone in the medical profession is first and foremost an educator, whether they like it or not.  They get paid for what they know, much more so than for what they do.  (Well, with the possible exception of some God-gifted surgeons.  )  The stupid and/or egotistical ones -- the idiots in doctor suits -- the ones with the "God Complex" (and that includes nurses and techs as well) , want stupid patients who don't ask questions and do as they're told.  For some their greatest fear is revealing their own stupidity.  When you couple ignorance with a huge ego, which can't be bothered by lowly patients, it can be a deadly combination.

Nobody knows my husband better than I do, and if I know enough, I may be able to help prevent many of the numerous life threatening problems CKD patients face on a daily basis.  I keep reminding myself that doctors do indeed bury most of their mistakes, but if we're educated and vigilant then, hopefully, my husband is NOT going to be one of them.

[Sluff]

They just don't want to take the time to explain things...your just another number to them...when you show them that you are armed with correct information it forces them to exercise their brains a little bit.  Hope they don't feel overworked lol..

[MattyBoy100]

I don`t think knowing too much is a bad thing.  On the contrary.  If you know what`s going to happen next or what could happen next then I believe you will be far better equipped to deal with each situation as it arises.  Ok, it may not be good but at least you can soften the blow by being prepared!

[meadowlandsnj]

I told a friend of mine about this website and without even looking at it she told me it was negative and bad to read!  So I told her this website is my lifesaver and without it I'd probably go nuts.  I got sick of the "we're as happy as clams on dialysis and we are smiling dumb ninnies who love it" mentality of the corporate owned information sites.  We desperately NEED the truth without the sugar coated BS they dole out to us every day in the dialysis clinics.  The truth hurts sometimes but we're adults who can share the pain and the disappointments, the bad times and the good times.  That's what makes us come together here, we can handle the daily BS that's handed to us and either get a good laugh or a good cry.  We understand here--that's all I ask for.  I don't need diet tips sometimes or how to help restrict fluids. That's all well and good.  I need someone to say to me "yeah, I know what you mean about catheters clotting, I know what you mean about feeling alone". 
Eopman, you'll never know what you mean to me and what this website means to me. 
Donna

[Black]

... Hope they don't feel overworked lol..

LOL

[Ginger]

I am a nurse and a dialysis patient on PD and the knowledge I have is not directly related to kidneys. In fact the only good thing about being a nurse when I had to start dialysis was that I knew where to look for information. (Also knew about sterile technique so handling things was easier than starting from scratch.) This site has been extremely helpful for me in letting me know the realities of hemo for when I have to switch over to it next year. I have been very reluctant and apprehensive about going onto hemo in the future. You all have helped me know the realities and that home hemo is very possible and that just maybe if I can use the NxStage, traveling (at least by car) is still a possibility without too much hassle.

I tell lots of people about this site and they say they will have to take a look. I tell them how supportive everyone is and that it gives us a place to rant and complain without putting all the stress on our loved ones at home. Epoman has created a great site to help us all stay SANE.

[GuyIncognito]

Information is the power techs and nurses lord over us, it keeps us from become "difficult"
However I have only experienced this in one hospital and now being at a private Bayshore clinic we are encouraged to seek out information as there are no neph's at the clinic, our nurses will discuss how we are feeling while being put on and if we have any issues they will E-Mail the doctor or look up the answers in any one of the many texts or on the internet for us...Being informed allows us to ask the questions or raise concerns that only we can know about.
As to this site... without it I frequently had the urge to do some serious ear punching (line ups, driving) and I was also developing a serious anger towards people with avoidable diabetes, however given this outlet and being able to speak with people in the same situation has helped me to let go of my anger and I can't thank Epoman and all involved with this site enough.

[mallory]

I've found that since I have more information, my doctors are more willing to discuss things with me.  It seems like since I started reading information on this site, I have better questions for the doctors.  So far, they seem to appreciate my interest and they've been receptive. 

I can't believe that anyone who has taken the time to look at the threads on this site would warn someone against it.  There's a lot of good, supportive information, and a lot of people who are willing to help.  How can that be bad?

[kitkatz]

If they warn you against this site tell them to come read some posts.  We are not all angry disillusioned lunatics.

[angieskidney]

I asked my social worker to print out the IHD flyer and she refused. She said I can't put any advertisments for sites up neither .. but I can print it out myself on my crappy printer and show people individually ..

I am not sure if it was the name of the site or what that she was against ... 

[Python]

I think this is a really great site.  If you're feeling down about something, you either get sympathy, encouragement, a boot up the backside or all three

I can't find anything negative in this site at all.  It tells it like it is but still has a tremendous amount of humour in it too.  I read the jokes thread yesterday and laughed my head off

All I can say is "keep up the good work"