How to handle the "advice" from others?

[Lovebelle]

I love my family, especially my cousins in Canada. We have been like the best of friends since we were young kids and they have been such a great support. Now my cousin and his wife are very Naturopathic, which I think is awesome. But since finding out about my Kidney failure and stuff, My cousin and his wife and been inundating me with tons of information on how to "cure" my kidney failure. At first it was nice, and I kind of tookt he information politely, but now Im just getting annoyed.

They at times call or message me on facebook about my "regimen". Their biggest advice was on this parsley diet, and sent an article on some man who cured himself eating parsley. As with anything, I wondered what his health history was. Perhaps his condition was different and parsley really helped him. I dont know, but they question me on how much parsley im taking in and are really adament about my diet and truly believe this will cure me. The last time I spoke to them, I said I wasnt aware of any natural method that can cure "scar tissue". I have FSGS, I dont think Parsley is the answer. But they persist and are even trying to save money to hire a naturopathic doctor who can help me.

Plus I have a sister who insists I need to invest yoga and meditation. Other uninformed family members who criticize the fact I have not been eating whole grains and enough fluid. Im going nuts. Between home dialysis, work, and everything else in my life including emotional ups and downs I really cant deal with it anymore. Ive always been sort of a "yes woman". Trying to make everyone happy, but Im at my wits end and am now coming off as a bit rude to people. I try my best to educate where opportunities present themselves. But the naturopaths in my family are very against modern medicine and I cant say anything to deter them.

How do you all deal with it.

[okarol]

 
People make me nuts.
Giving advice on something they don't understand.
I guess just say "I have researched it, thanks. It won't help in my case."
 

[RichardMEL]

I think I would just try to politely say thank you for your advice and suggestions. You are under the care of your medical team who know your personal situation well and you follow their advice as best you can as they are the best ones to know what is right for you to be doing.

Obviously all the suggestions and whatnot are bourne of a misplaced desire to help because they care - absolutely so I think you need to be careful in how you react. I've had to say similar to my brother who, like your sister, is all about the alternative therapies - he once suggested I take some random Indoan medicinal suppliment.. I just simply said "Look I'm sorry but we dont know what's in this. It could be full of potassium or something that could be very harmful for me. I appreciate your concern and desire to help but I'm just not willing to trust my health to something where I just don't know what's in it" - now if he wants to get offended by that, or in your case your sister or others - that's THEIR problem. You have to do what's right for YOU and what YOU are comfortable with. At the end of the day it's your life and your body.

[Riki]

My father was like that.  He used to harp on the fact that I only ate white bread and I wouldn't eat long grain brown rice (besides the fact that I don't like it. *L*).  He should have known better, and he was there through everything in the beginning when I was a kid.  Finally, I gave him a pamphlet on high phosphorus foods and told him that those were the foods I wasn't allowed to eat.  He's since stopped harping.

[jeannea]

I would firmly say "My doctor and I have decided what is best for me and that is what I am doing." Then change the subject.

But I can't say that meditation is a bad idea. I've given up yoga since it's hard for me to lay on my stomach since I'm on PD. But meditation can be very useful for calming, for pain relief, for a number of things. If you think you want to try it it won't hurt you and you might like it. It's not for everyone but I have found some of the methods very useful. It won't cure you but it can help make you feel better in the moment.

[RichardMEL]

My father was like that.  He used to harp on the fact that I only ate white bread and I wouldn't eat long grain brown rice (besides the fact that I don't like it. *L*).  He should have known better, and he was there through everything in the beginning when I was a kid.  Finally, I gave him a pamphlet on high phosphorus foods and told him that those were the foods I wasn't allowed to eat.  He's since stopped harping.

I don't know if that means he was edumacated or not.. maybe he wa peeeved that you gave him the info and resented it, or maybe he actually realised that you were doing what you were supposed to, which is a good thing, and realised that you knew what you needed to do (I hope that's it!).

It would be nice if we could all educate those around us - some aren't interested or some think they know better... and while I don't want to say that those, for example, who subscribe to non-traditional healing methods are wrong or anything (I simply don't know) the fact is that I am comfortable with what my medical team suggest for me and at the end of the day shouldn't those around us respect that?

[MooseMom]

Oh oh oh...here's what I do that works like a charm.  I get all professorial and begin lessons on CKD/ESRD, its causes, its effects, the dietary requirements and the results of potassium and phosphoric overload.  I inundate people with so much information that they don't ever dare bring up the subject again.  I know I've succeeded in shutting them up forever when I see their eyes begin to glaze over.

Richard, you are such a nice person, but I have to disagree with you when you generously give people the benefit of the doubt and say that it is because they care.  No, they don't.  They want to micromanage you.  If they cared, they would pause to understand that a renal patient has specific concerns that are not going to be resolved by eating parsley.  Instead, they want to be judgmental and close minded.

People do not understand that a healthy diet for them can kill a renal patient.

Again, if you start lecturing these people on the ways that damaged kidneys affect the body, and if you add some extra oomph and start talking about the miracle of living donation, I'd bet the north forty that they will stop with the nonsense.

[RichardMEL]

No offence MM.. it's all good Yes I am nice. nice guys finish last you know! 

I suppose I feel the rationale behind such actions is motivated by a desire to help. Yeah some people want to control and micromanage etc but at the end of the day it's not their lives and not their bodies. We have to do what's right for us.

Unless it's a hot woman that I would like to micromanage back to my place to show her how a transplant REALLY works....  

oh crap did I write that down?! 

[Riki]

My father was like that.  He used to harp on the fact that I only ate white bread and I wouldn't eat long grain brown rice (besides the fact that I don't like it. *L*).  He should have known better, and he was there through everything in the beginning when I was a kid.  Finally, I gave him a pamphlet on high phosphorus foods and told him that those were the foods I wasn't allowed to eat.  He's since stopped harping.

I don't know if that means he was edumacated or not.. maybe he wa peeeved that you gave him the info and resented it, or maybe he actually realised that you were doing what you were supposed to, which is a good thing, and realised that you knew what you needed to do (I hope that's it!).

My dad was there and went through all the new training and lectures that were given by doctors, nurses, and dietitians.  He should have known what was high in phosphorus and what wasn't, like my mother does.  But, since he's a guy, he may have just not paid attention. *LOL*

People do not understand that a healthy diet for them can kill a renal patient.

Exactly.

Dad's been on a health kick for the last 3 or 4 years.  He was driving Mom and I a little nutty with it.  He wanted Mom to stop buying white bread and white rice, and only buy whole wheat pasta and long grain rice.  My mother buys Mr. Noodles for me, for 2 reasons.  1, I like ramen noodles, and 2, the soup stock is great if you have low blood pressure, like I do, because of the high sodium content.  What I'd do, if I didn't want the salt, is just cook the noodes and put some margarine on it.  He used to stop me and ask why I couldn't just have a bowl of cereal.  He didn't seem to get that there was a double whammy with that.  No amount of "it's good for you but not for me" would get through to him.

I love my dad, but if he hadn't moved out when he did, I probably would have killed him. *LOL*

[Riki]

Unless it's a hot woman that I would like to micromanage back to my place to show her how a transplant REALLY works....  

oh crap did I write that down?! 

*LMAO*

This is really off topic, but that reminds me of a story..

I remember, not long after my last transplant, I was laying in bed, and my boyfriend of the time came into the bedroom.  He laid down beside me, and he was getting a little cuddly, and he ran his hand down my side.  Then he got this weird look on his face, he looked at me and said, "what the hell is that huge lump?"  I told him it was the kidney.  He seemed a bit grossed out about it. *L*  it was only a month or so after the surgery, so it was probably still a little swollen, cuz it's not that big anymore.  He's such a sweetie.  He was still young and a bit innocent then, so the whole thing struck me a bit funny.

[MooseMom]

I suppose I feel the rationale behind such actions is motivated by a desire to help.

In many cases, you are right.  People who care want to help, even if it is with stupid and ill-informed advice.

But people who really care and REALLY want to help will listen to you when you explain to them that what is healthy for them is not for you.  They will trust that you know what you are talking about and will support you in your quest for renally friendly foods instead of constantly trying to undermine you because they can't get their heads around the fact that freshly squeezed organic orange juice may be fine for them but will quite possibly kill you.  They are more interested in pontificating than in understanding that your needs are specific and must be heeded as it is a matter of life and death.

[justme15]

I, too, have a friend that asks about my diet every time I talk to her. she really wants me to try these herbs/supplements that she uses. she has uterine cancer, and feels they are helping her.
I just explain that I will gladly take any info she has on the supplements and show it to my doc. and if he agrees to it, (which I'm sure he won't) then I will try it.
I also explain that these herbs and supplements may have negative interactions with the medications I'm taking to keep my transplant safe.

[Deanne]

I try to remember the adage, "Those who are convinced against their will are of the same opinions still." In other words, I don't think I can change how they think, so I don't even try. "Woo woo arts" (as I call it) seem to be a part of a belief system. I don't think there's any way to convince them they're wrong. You could point them to skeptoid.com just for fun, but that's just playing with them for entertainment.

I just nod, say "thank you," and change the subject. Thankfully, I don't have to deal with this kind of stuff that much. My mom tries to tell me what to eat and what pills to take sometimes, but she lives halfway across the country from me and I don't discuss medicine with her, so she doesn't know what I do or don't do in the first place in order to comment on it. One of my neighbors tried to push woo-woo medicine on me and I told her I don't take anything without my Dr's approval. She left me alone after that. When friends talk about woo-woo stuff, I start talking about skeptoid. That usually annoys them and they shut up.

[Whamo]

I would prefer advice to the questions.  Can you eat this?  Why not?  Blah,blah, blah. 

[SooMK]

As someone who is always giving people advice whether they want it or not (although not usually dietary) you can guess where my sympathies lie. And I think these folks run the gamut--some of them truly care and some of them are more along the lines of what MM says. I think you have to come up with what works for the relationship in question. It's no fun alienating someone you love but maybe someone down the block--who cares? Even though my mom was on dialysis for years before she died it was incomprehensible to me how crummy food could be doing anyone any good (are there other diseases where this is true?). I am truly sorry that I didn't take the time to get educated at all about what she was going through (no problem, I'm learning now, ha ha). My mother didn't try to educate anyone at all though and in fact she would never allow anyone to make any accommodations for her dietary needs which encouraged our ignorance.  You may not be able to change some of these folks' mantra but you can either cut them out of your life, push back (gently or shove) or you can change how you react to what they say. Like Deanne said you can always say thank you very much and ignore it. You don't have to answer every question that is asked of you either (FB posts do not necessarily require answers). I also have to put in a good two cents regarding meditation. I find it helpful and it can't hurt, unlike oj. The thing about advice is that it's not all equally bad (I mean look where we're hanging out here.)

[Riverwhispering]

I too have experienced this "helping hand" advice.   Where I am in WA there are so many people I know that are totally into organic eating and living naturally without chemicals and stuff in their food like our Great Grandparents ate.   I swear it seems each month someone is telling me I should eat this or not eat that so my body will heal itself.   They have no clue about the effects of potassium , phosphorus and the need for animal protein we have when we are dealing with kidney disease.

I don't even bother telling them what I've learned from my Neph and research online.   I just nod and say ok I might give it a try.   

[Desert Dancer]

I'd probably give them a wide-eyed, absolutely HORRIFIED look, clutch my chest, stagger back and gasp out, "Are you trying to KILL me???!!!" (Play it up ala Fred Sanford.) Then I'd explain that while their 'remedies' might do well for someone who still has kidneys, once they're gone you've entered into Bizarro world, where up is down, black is white, war is peace and white bread trumps whole grain. That brown rice will cause your bones to crumble and orange juice is a heart attack in a glass. Point up all the worst consequences of their suggestions. If they have any scars, ask them why their 'remedies' haven't eliminated their scar tissue and why they think scarred kidneys are any different. With as many women out there who have had c-sections that shouldn't be a difficult parallel to point out.

If that didn't work I'd just say, "Thank you, I'll have my nephrologist take it under consideration" and abruptly change the subject.

Some people. 

[Katonsdad]

I have an Aunt who when I was young and Diabetic ,would say , What a piece of cake> Oh, I am sorry YOU CANT HAVE CAKE!.
Drove me nuts for years.   Finally she said it one time and I shouted back at her I DONT WANT ANY CAKE !!!/

Never bothered ne again , and yes we do still talk.

Now days I just thank people for the advice

Katonsdad

[Gerald Lively]

Yep!  Fish gets you mercury, beef gets you all sorts of bad stuff, chickens get you bird flu, and eggs used to get you cholesterol. Heck and darn, you can’t tell what they used to grow you veggies in.  To sum it up, Folks, food is bad for you.  So, quit eating.

As for those flighty people with dietary advice, show them the bird, or flip it to them.

gl 

[amanda100wilson]

Riki's comment about her boyfriend made me smile.  I remember a non neph dr. Examining me and being horrified when she came upon my tumour, oh, I mean my kidney transplant.  Obviously not all doctors know that they stuff them iin where they do.  On another occasion, whilst having an ultrasound, someone else being extremely worried that they had come upon the same thing!  Dessertdancer, I loved the point about scars not going. 

What amazes me though, is that if I am invited around for a meal, no-one everthinks to ask me if I'm on a special diet, or, given that I don't drink alcohol, and most think that it's my health issue that precludes it, rather than that I just don't want to, ever to bother to find out what I would like to drink.  The consequence is, the offer is usually orange juice or coke.

One of the most irritating things to ever to be said to me was by my husband's gran soon after I had received the devastating news about my kidney disease in my mid 20's - "you need to have a baby dear, then you will be ok".  Not knowing if having a family could ever be an option, that was the most hurtful thing that anyone could have said.  I know that she said it with the best of intentions, and a pretty simple woman anyway didn't make it any easier.  I was never able to ever forgive her for crass insensitivity and stupidity.

Someone was trying to sell me her vitamins from her stupid pyramid scheme after finding out about my ESRD too.  Wasn't too impressed about that one either.

[sullidog]

I agree with what's been said, I'd also give them a coppy of the kidney diet and have them do research. They sound like that idiot that posted those youtube videos, remember him?

[MaryD]

A good friend of 30 odd years has recently become a "wellness consultant".

She keeps giving me bottles of mysterious concoctions, and insists that I should read all Louise M Hayes' books.  She even wants to do a hands on 'aura' type procedure. 

The only thing saving this old friendship is the distance that we now have between us.  She lives four hours away, and we only see each other every six months or so.

[Lovebelle]

Alot of these posts complete crack me up  I guess at the end of the day I know they have the best intentions, but it can really annoy the crap out of me.  Its just sad that Ive gotten to a point with my overbearing cousins, where I avoid talking to them at times. I guess I end up feeling like a specimen in a study and Im being noncompliant. Dont need that all the time. Under different circumstances I would embrace some of the advice, but Kidney disease is unique unto itself, and the diet restrictions alone are bizarre to many people.

 I once told my father that i have entered an alternate dimensions where all things that are supposed to be good for me can kill me, and those things that are typically bad are ideal. Twisted, I know.  Luckily those that are the most informed and supportive live close by, When I visit my mom and stepdad, they also ask before they add something to food they're cooking. They always make me a separate batch of rice with no beans..etc. So yeah in terms of that, I know I am lucky.

Here is a funny (or not so funny) story from today at work. I was training one of the new Medical Assistants and she saw the picture on my badge from 3 years ago (pre-Kidney failure) where I was like 60lbs heavier. She reacted, got excited and was asking how I managed to lose so much weight, blah blah blah. I just said, I got sick...end of story. Kidney failure, combined with nausea, and a limited diet of stuff I typically hate eating. The stupid girl says, "Oh I wish I could get sick and lose weight." In that moment I realized I was training one of the dumbest people ever.

[amanda100wilson]

I will admit a guilty pleasure.  I love the fact that I can lose 2lb in two hours on HD without any effort.  Wasn't so much fun in-unit, bit it's so much easier at home.  Beats weight watchers with all the annoying claptrap that you get at one of their meetings! 

[Riki]

I will admit a guilty pleasure.  I love the fact that I can lose 2lb in two hours on HD without any effort.  Wasn't so much fun in-unit, bit it's so much easier at home.  Beats weight watchers with all the annoying claptrap that you get at one of their meetings! 

Oh yeah.. today I went from 105.9kgs to 103.6kgs in four hours... and I slept through the whole thing!!  *LOL*