When someone has a severe, specific medical issue (modified JAWM vent)

[Joanne]

I've had this thought before when reading other threads. I've experienced it personally when posting about my dd's juvenile rheumtoid arthritis and my husband's liver issues.

 

There will often be one, or two, posts offering extreme "alternative" ideas. While I REALLY DO appreciate the heart behind the "sharing", my reaction is typically irritation. The "helpful suggestions" often come at critical times, and alternative ideas seem to be trivializing to me.

 

When it comes to very specific issues, I'd rather you trust me that I have researched and done due diligence. I live in the Houston metro area, for goodness sakes; the medical field is the premier employment mechanism after oil and gas.

 

I have spent HOURS, countless HOURS in medical establishments with my family members. I have talked to dozens of medical people.

 

When *I* read extreme/alternative ideas (particularly ones that relate to diet - no nightshades, gluten free, .........) I feel disrespected and frustrated. You don't know me, my situation, my people, our unique medical circumstance.

 

I won't tell you how to post in these threads. I am a forum veteran, and I know how it goes. I suspect, though, that I am not alone in my reaction.

[Mrs Mungo]

I've had this thought before when reading other threads. I've experienced it personally when posting about my dd's juvenile rheumtoid arthritis and my husband's liver issues.

 

There will often be one, or two, posts offering extreme "alternative" ideas. While I REALLY DO appreciate the heart behind the "sharing", my reaction is typically irritation. The "helpful suggestions" often come at critical times, and alternative ideas seem to be trivializing to me.

 

When it comes to very specific issues, I'd rather you trust me that I have researched and done due diligence. I live in the Houston metro area, for goodness sakes; the medical field is the premier employment mechanism after oil and gas.

 

I have spent HOURS, countless HOURS in medical establishments with my family members. I have talked to dozens of medical people.

 

When *I* read extreme/alternative ideas (particularly ones that relate to diet - no nightshades, gluten free, .........) I feel disrespected and frustrated. You don't know me, my situation, my people, our unique medical circumstance.

 

I won't tell you how to post in these threads. I am a forum veteran, and I know how it goes. I suspect, though, that I am not alone in my reaction.

 

When people make suggestions of trying out extreme alternative medicine for life threatening medical problems, I just write them off as kooks. I apply that kook label to other posts and take what they say from then on with a big grain of salt. Just as another FYI.

[OH_Homeschooler]

Yes, I think it's most frustrating when people assume they simply know more than you do just because they know about an alternative option. It's possible that you, following the mainstream medical advice, actually considered the alternatives as well and rejected them, based on your own in-depth research. And it is extremely trivializing.

[runbikeswim]

My best friend has MS. When Romney was running for Pres, everyone kept telling her bout Ann Romney.

 

Look how energetic she is, I heard horseback riding cured her MS! Try Reiki therapy, it helped her s lot. And on and on. It made my friend so frustrated and it also seemed like people were blaming her in a way. Like if she hadn't tried aternative x,y and z, she must not really want to get better.

 

 

[unsinkable]

I have a DD with a serious health issue.

 

People mean the best, I think. They just don't have the information I have.

 

It sucks to read about people's pain on these boards and not know what to do or say. That's where I think people are coming from.

 

 

 

 

[SKL]

Knowing that the person's heart is in the right place is where I stop. Period.

[SKL]

PS, I'm not sure what "modified JAWM" means, so I apologize if I was out of line.

[unsinkable]

Just so you know I have heard people say some stupid stuff...

 

A friend told me I caused DDs epilepsy by letting DD get ear tubes. A chiro would have fixed the ear infections and then DD wouldn't have started having seizures...

[OH_Homeschooler]

Yes, there does seem to be a lot of "blaming the victim" implied when someone gives wacky advice.

 

And what happens when someone's condition is fatal and that person dies, and you're left wondering, gee, if only I DID (somehow) give him 20 oranges a day he might have survived. That "helpful" advice is not helpful at all, it adds another layer of guilt to the survivor's plate of grief.

[Impish]

I understand.

 

I've had so many ppl insist that they know what to do for RSD, and if I'd listen to them, I'd be cured.

 

Everything from diet, to 'just push past it!' to, "You don't have enough faith, God would heal you if you let Him!" and even being accused of LIKING having RSD, that it gets me out of things and gets me attention.

 

Yeaaaaaah.

 

I get that ppl want to help, want to offer hope...but there comes a point where it comes across as more accusatory, more insulting, than anything else. I find it darkly amusing when I have to explain what RSD is to someone, and in the same convo, they're suddenly the font of all knowledge, knowing exactly what to do to fix it.

 

And then ppl get insulted if you don't follow their advice.

[Mrs Mungo]

"You don't have enough faith, God would heal you if you let Him!"

 

 

This makes me SO MAD. Bad things happen to good people every day. This is the sort of belief that causes people to lose their faith when bad things happen to them. Bad times are when you most need your faith. It makes me so sad.

[AK_Mom4]

I totally agree with you on this one, Joanne.

 

I have my own "hot button" phrases on medical issues that that cause me to shoot 3-foot flames out my ears when I see people spout off with that carp. I won't specify which ones as I would rather not damage my desk chair again.

 

I definitely see the *blame the victim* thing as a diabetic. After all, *everyone* knows that all diabetes is caused by people being fat and ugly and pigging out on junk food all the time.

 

Drat.... there went the couch cushion.....

[Ellie]

:grouphug: :grouphug: :grouphug:

 

I've seen this happen multiple times, on multiple forums. :glare:

[goldberry]

:grouphug: :grouphug:

 

I think it has to do with the manner of the person also. Some people can say, "I'm sure you already have tried/researched this, but I know blah-blah has worked for some people, if you haven't already checked into that. Of course nothing works for everyone, and I'm so sorry you are going through this."

 

I think if people really feel compelled to offer, that's a less harmful way to do it.

[gardenmom5]

, "You don't have enough faith, God would heal you if you let Him!"

 

and even being accused of LIKING having RSD, that it gets me out of things and gets me attention.And then ppl get insulted if you don't follow their advice.

 

ah, job's comforters. I always simply ask such caring souls if they've read job lately.

 

or more recently - the man born blind and Jesus was asked who sinned, the man or his parents, said NEITHER.

[Heatherwith4]

I have no problem JAWY. :)

[amo_mea_filiis.]

Just so you know I have heard people say some stupid stuff...

 

A friend told me I caused DDs epilepsy by letting DD get ear tubes. A chiro would have fixed the ear infections and then DD wouldn't have started having seizures...

 

I got a long lecture from a friend of my mother's who said that ds wouldn't have ear infections if i stopped giving him all forms of dairy. I know this can be the case with some kids. My problem with her lecture? Ds was anaphylactic to dairy at the time! He once stuck his finger in ice cream and licked the finger quicker than i could react and it put him in the hospital. We were avoiding dairy like the plague, but this woman "knew for a fact" that cutting a food he wasn't eating would cure his ear problems.

[Hwin]

So, it's not a severe medical issue, but I do feed my aspie son gluten on a daily basis.

 

I've also had it suggested that I just need to moisturize my psoriasis more. Because shedding wet chunks of dead skin is cooler than shedding dry skin. (And yes, skin is healthier when it's moisturized, but coconut oil is not a steroid and, in fact, coconut oil cannot solve all the world's problems.)

 

Sorry you've dealt with this in a more serious venue. I can't imagine offering up advice to someone dealing with a serious medical condition, although I do try to offer types of support to friends and often come up short.

[Mergath]

Just so you know I have heard people say some stupid stuff...

 

A friend told me I caused DDs epilepsy by letting DD get ear tubes. A chiro would have fixed the ear infections and then DD wouldn't have started having seizures...

 

I don't know what it is with epilepsy especially that brings out the kooks. I've had people tell me I'm possessed by demons, and that's why I have seizures. And here I thought we were living in the twenty-first century... :glare: Or if I'd just cut [insert food or ingredient here] from my diet. Yeah, 'cause going GF is really going to fix my temporal lobe abnormality. Ugh.

 

And Joanne, I agree with you. Unless someone is an actual medical doctor, they shouldn't be pushing people to try iffy alternative treatments for serious illnesses over the internet. It's rude and potentially dangerous.

[gardenmom5]

:grouphug: I get it. I really do. some people genuinely want to be helpful, and don't really know how. (even though they could be more helpful by giving a hug and a shoulder). others simply think *they* know better and must pontificate.

 

I have an aspie, and before he was diagnosed I had several people tell me *I* was the problem. (to my face!) I received many suggestions of what parenting classes I should take. (what part of I have four delightful adult children did they miss?) I even had a few peds blow me off *after* he was diagnosed by the medical school's child dev center. after all - he "looks" normal . . . . .

[FaithManor]

Sorry Joanne! I can't imagine how much pain it causes you. Of all the people on this board, you are the one that most knows what the word "research" means.

 

I don't know why people do it, other than I guess maybe the people who are natural born "fixers", just have to attempt to fix even if it is completely inappropriate to make comments.

 

Imp, I have no use for "faith based" people who make those comments.

 

I don't post here much at all about ds's heart because of just this kind of thing. Actually, I don't talk about it in real life...dh and I just bury it because it's easier than dealing with people's opinions which means we never ask for prayer either and for people like us, who draw a lot of strength from prayer and the good thoughts of others, that kind of stinks.

 

Lots of love, prayers, and support going out to all of you today...Joanne and Adrian, Luke and family, ....

 

Faith

[unsinkable]

 

 

I don't know what it is with epilepsy especially that brings out the kooks. I've had people tell me I'm possessed by demons, and that's why I have seizures. And here I thought we were living in the twenty-first century... :glare: Or if I'd just cut [insert food or ingredient here] from my diet. Yeah, 'cause going GF is really going to fix my temporal lobe abnormality. Ugh.

 

And Joanne, I agree with you. Unless someone is an actual medical doctor, they shouldn't be pushing people to try iffy alternative treatments for serious illnesses over the internet. It's rude and potentially dangerous.

 

 

(((Hugs))) j/k but how many sets of ear tubes do you have??? LOL...black humor.

[sassenach]

Yeah, I had that same reaction to the oranges. Sigh. Their heart is in the right place. They, I assume, believe what they're sharing. They probably feel like if they don't share it, they are doing something wrong. It's a no win. And sometimes those crazy nutritional based cures work. My friend's son has medically documented healing of EE from gerson therapy. I thought they were crazy when they started it, but it's working. Their son's case was so bad that the people at the top EE hospital in the country (Cinci) had thrown up their hands. So there's stuff like that. But yeah, it feels like a knee to the gut when somebody suggests some alternative treatment to one of my son's many conditions.

[plansrme]

If you would just go gluten-free, those comments wouldn't bother you so much. You know, 'cause gluten causes everything.

 

You're welcome.

 

Terri

[Mergath]

I just saw what I'm assuming this post is regarding, and... yeah. That was just not cool. It would be like me saying to somebody, "Hey, I had a headache once and eating lots of apples made it better, so I bet that'll help your brain tumor." Just... no.

[Lady Florida.]

One of the reasons I never post medical info or questions is because I'm fully on board with modern/Western medicine. The quote in my signature makes that pretty clear. I also stay out of threads discussing alternative "cures". If it comes up in a thread in which I'm participating, I usually ignore it.

 

But yeah, I do agree with you.

[Word Nerd]

On another board, a mom shared that an acquaintance kept trying to convince her to start using a particular company's "natural" remedies to reduce the symptoms of and/or cure her daughter's Down syndrome. I'm sure she thought she was being helpful instead of utterly clueless and offensive, but crikey.

[Lady Florida.]

in fact, coconut oil cannot solve all the world's problems.)

 

 

According to some people I know IRL, coconut oil is a miracle cure for just about anything. :tongue_smilie:

[Crimson Wife]

I don't consider GF to be an "extreme" or "kooky" suggestion. A certain (as yet undetermined but it's more than the 1% with celiac) percentage of the population is gluten intolerant, and when those people consume gluten, it can cause an autoimmune reaction that can worsen other medical conditions. Going GF may not cure whatever the underlying medical condition is, but it can help stop the immune system from going haywire and making things worse. It is also a fairly easy and risk-free thing to try. A person cannot know if it might help them without doing a trial of the GF diet.

 

My youngest has non-celiac gluten intolerance and if I hadn't listened to "those kooks", I never would've known that it was the reason why she was off-the-charts small.

[TeacherZee]

According to some people I know IRL, coconut oil is a miracle cure for just about anything. :tongue_smilie:

 

Those would be the nuts in in coconut then :tongue_smilie:

 

 

Sorry I couldn't resist

 

Joanne people are idiots at times. ((Hugs))

[caroljenn]

I get this too. Dd has Chronic Fatigue Syndrome. People ask me if I give her vitamins. Gee whiz! Why hadn't I thought of that???

 

I usually just step back and realize they are trying to help. When you don't understand something, your "help" probably won't be very helpful, but I think most people usually have good intentions.

 

Sorry you have to deal with this.

[Whereneverever]

 

 

(((Hugs))) j/k but how many sets of ear tubes do you have??? LOL...black humor.

 

Well, I can clear that up for you- my DD developed epilepsy before getting ear tubes. So rest easy. ;)

 

Seriously, though, after she nearly died as a toddler before getting it under control with western medicine I had people tell me we just needed to address diet, see a chiropractor, or try these certain herbs and she'd be cured.

 

What really bothers me is the assumption that there is something we could be doing and aren't that would cure our dear ones or ourselves. Folks, if it was so easy, we'd do it. :(

[TravelingChris]

I do JAWY but do want to say that some herbs and vitamins do work- however, I want to know about evidence. So there are herbs that help with sleep or with anxiety, ones that help with depression, and a vitamin that has been shown to be as effective as mainstream migraine medicine. OTOH, some of those have just as many side effects and restrictions as traditional prescription. Basically, I am with Floridamom, it works or it doesn't and I want to see proof.

\

In terms of horse riding and MS, I think it is just a particularly more effective form of PT. It won't cure the autoimmune portion at all- but as everyone should know, MS is very on/off disease and much more so than some others.

 

DD hasn't had the devil has got a hold of her explanation yet for her seizures. We have been very quiet with most homeschoolers about our other dd's issues since anything with the brain seems to draw out the kooks.

 

I remember about 12 years ago having a home school mom yell at me for parking in the handicapped placard spot- though I had one at that time and needed it. I was homeschooling three active children, taking care of the house, and my dh was out of town every week from Sunday night to Friday night. I was on less medications then and I was not doing well with my RA. Parking closer made it possible for me to still take the kids to the plays and concerts. Parking a few blocks away would have meant they didn't go. If you ever have a question why someone has a handicapped placard, ask them- don't yell at them. You can't see heart disease, lung disease, and many forms of arthritis. I am sure there are other issues that preclude long walks that aren't visible.

[Mergath]

I don't consider GF to be an "extreme" or "kooky" suggestion. A certain (as yet undetermined but it's more than the 1% with celiac) percentage of the population is gluten intolerant, and when those people consume gluten, it can cause an autoimmune reaction that can worsen other medical conditions. Going GF may not cure whatever the underlying medical condition is, but it can help stop the immune system from going haywire and making things worse. It is also a fairly easy and risk-free thing to try. A person cannot know if it might help them without doing a trial of the GF diet.

 

My youngest has non-celiac gluten intolerance and if I hadn't listened to "those kooks", I never would've known that it was the reason why she was off-the-charts small.

 

I think everyone in the West has heard of GF diets at this point. You're entitled to eat like that. I'm entitled to think it's just another fad diet. *shrug*

[Mrs Mungo]

I don't consider GF to be an "extreme" or "kooky" suggestion. A certain (as yet undetermined but it's more than the 1% with celiac) percentage of the population is gluten intolerant, and when those people consume gluten, it can cause an autoimmune reaction that can worsen other medical conditions. Going GF may not cure whatever the underlying medical condition is, but it can help stop the immune system from going haywire and making things worse. It is also a fairly easy and risk-free thing to try. A person cannot know if it might help them without doing a trial of the GF diet.

 

My youngest has non-celiac gluten intolerance and if I hadn't listened to "those kooks", I never would've known that it was the reason why she was off-the-charts small.

 

Except some people offer it up as a cure for things that having nothing to do with gastro issues or mal-absorbtion issues. We're talking about people who offer it up as a reason or cure for completely unrelated issues.

 

I do JAWY but do want to say that some herbs and vitamins do work- however, I want to know about evidence. So there are herbs that help with sleep or with anxiety, ones that help with depression, and a vitamin that has been shown to be as effective as mainstream migraine medicine. OTOH, some of those have just as many side effects and restrictions as traditional prescription. Basically, I am with Floridamom, it works or it doesn't and I want to see proof.

 

Oh, I don't think *anyone* disagrees that some herbal medicines and vitamins work for some issues. We're talking life threatening issues and suggestions of very fringe cures. My youngest sister is getting close to liver failure as a result of metastatic breast cancer. No herb or GF diet is going to cure her. But, you wouldn't believe what some people suggest. It is *insane*.

[Brilliant]

This wasn't life threatening or anything, but one of my dc had severe acne for which she was under a doctor's care. She is very pale complected, and was already getting scarring. We decided to go with the nuclear option (accutane, which meant bcp prescription and monthly lab visits - it was very intrusive but dd, dh and I all decided it was worth it). But I had a couple of friends who were surprised we would do that - they wanted us to try holistic methods like cutting dairy from her diet and rubbing kefir on her face. OK, try it with your kid's cystic acne and let me know how it goes!

 

We were thrilled with the results of the accutane.

[OH_Homeschooler]

I don't consider GF to be an "extreme" or "kooky" suggestion. A certain (as yet undetermined but it's more than the 1% with celiac) percentage of the population is gluten intolerant, and when those people consume gluten, it can cause an autoimmune reaction that can worsen other medical conditions. Going GF may not cure whatever the underlying medical condition is, but it can help stop the immune system from going haywire and making things worse. It is also a fairly easy and risk-free thing to try. A person cannot know if it might help them without doing a trial of the GF diet.

 

My youngest has non-celiac gluten intolerance and if I hadn't listened to "those kooks", I never would've known that it was the reason why she was off-the-charts small.

 

 

I used to think gluten-free was another fad but as I am learning more about it, I realize some people are truly gluten intolerant. I guess there have been major changes to wheat production in recent years, which would explain the increased population having problems with gluten. And of course, if you are gluten intolerant, don't eat gluten! That makes total sense and I don't think that's the issue with the OP at all. (I'm guessing the issue stems from another thread where the wife of a dying man was urged to make him eat 20 oranges a day).

 

As others have pointed out, many people have adopted gluten-free and tout it as the solution to everything, never having been tested for gluten intolerance and so on. The vocal minority have again ruined it for people who have real problems.

[Joanne]

So, it's not a severe medical issue, but I do feed my aspie son gluten on a daily basis.

 

I've also had it suggested that I just need to moisturize my psoriasis more. Because shedding wet chunks of dead skin is cooler than shedding dry skin. (And yes, skin is healthier when it's moisturized, but coconut oil is not a steroid and, in fact, coconut oil cannot solve all the world's problems.)

 

Sorry you've dealt with this in a more serious venue. I can't imagine offering up advice to someone dealing with a serious medical condition, although I do try to offer types of support to friends and often come up short.

 

 

Actually, I have dealt with this one, too! DH with the failing liver has severe psoriasis, also. So many cures!

[Hwin]

Actually, I have dealt with this one, too! DH with the failing liver has severe psoriasis, also. So many cures!

 

 

Ah, well, the Kardashians are now using their breast milk to cure it. So there's that.

[Joanne]

 

 

Ah, well, the Kardashians are now using their breast milk to cure it. So there's that.

 

 

I had a property insurance estimator tell us to use antifreeze.

[Mom0012]

 

 

When people make suggestions of trying out extreme alternative medicine for life threatening medical problems, I just write them off as kooks. I apply that kook label to other posts and take what they say from then on with a big grain of salt. Just as another FYI.

 

 

I think it depends, though, if they are suggesting it as an additional thing to try to ease symptoms vs. recommending dropping chemotherapy, for example.

 

ETA : I misread the OP's original post and thought she said she was frustrated about getting advice on alternative treatments when asking for treatment advice. I see now that she is talking about just mentioning the condition and then receiving unsolicited advice.

[OH_Homeschooler]

I had a property insurance estimator tell us to use antifreeze.

 

 

LOL That sounds like great advice from an excellent source.

[KungFuPanda]

I've had equine therapy and GF recommended for my son's Duchenne's muscular dystrophy. It is astonishing that someone would give advice when they have no clue about my son's diagnosis. I swear half of them think he has MS . . . . you know, because it's two words and is all medical sounding?!?! We'd LOVE to have MS instead. No one has ever 'survived' DMD. A horse ride and sub-standard bread products won't change that.

[Mrs Mungo]

I think it depends, though, if they are suggesting it as an additional thing to try to ease symptoms vs. recommending dropping chemotherapy, for example.

 

 

Dropping gluten (just to take one example) will not help someone with an allergy or sensitivity to gluten turn around their advanced breast cancer and could significantly add to their mental health burden. No, it is not helpful. Same with eating a bunch or oranges or cabbage soup, etc. These things are not helpful and *often* add to the burden of the patient and family. I think people should understand that.

 

Now, saying something like, "have you tried acupuncture to manage the pain?" Is a different type of question/suggestion. It doesn't suggest a *cure*, which is what other people do.

 

And it is different receiving advice from someone who knows and loves you versus random strangers. I don't even appreciate receiving advice about how to "tame" my curly, curly hair from random strangers.

[SKL]

I agree that that oranges comment probably belonged in a PM instead of where it appeared. However, it seemed to me just a guy saying something simple helped his loved one when there was no hope otherwise. (That person probably assumed the problem was kidney only, because that's the only failure the OP mentioned in that thread IIRC.) Hopefully the OP was not hurt by the comment. She's got lots worse to worry about than whether oranges are a radical cure or not.

 

I was glad that nobody was crass enough to junk up the sympathy thread with retorts about the oranges.

[gardenmom5]

So, it's not a severe medical issue, but I do feed my aspie son gluten on a daily basis.

 

 

I know of three DNA mutations linked to asd, as well as gut bacterium and even a brain bacterium. what works for one, may or may not work for another because the causes are different.

 

according to testing, my son should be gluten intolerant, but I didn't see much difference after doing a strict GF diet for five months. I know some who swear by it. oth: give him nitrates and I will personally tar and feather the culprit because of what they do to him . . .

 

I just saw what I'm assuming this post is regarding, and... yeah. That was just not cool. It would be like me saying to somebody, "Hey, I had a headache once and eating lots of apples made it better, so I bet that'll help your brain tumor." Just... no.

 

that isn't just "Kooks" who say that sort of carp. My friends dd's DOCTOR told her everything was in her head, she needed to stay away from her parents because they'd messed her up, her religion had messed her up, that her headaches were nothing to be concerned about and she should stop complaining about them because she was too much of a hypochrondriac to have a brain tumor.

 

It's a miracle someone else ended up examining her after two years of that. she had a *massive* brain tumor. she was weeks from the tumor killing her. (even then, they gave her a 50% chance of dying in surgery.)

 

According to some people I know IRL, coconut oil is a miracle cure for just about anything. :tongue_smilie:

 

no no no, it's not coconut oil. :p It's yak butter. . . . or was it llama butter :001_huh: anyway. that's what the lady at the street fair said would cure any skin condition and make your hair beautiful if I only paid $ :eek: an oz for her tiny jar.

 

I remember about 12 years ago having a home school mom yell at me for parking in the handicapped placard spot- though I had one at that time and needed it.

You can't see heart disease, lung disease, and many forms of arthritis. I am sure there are other issues that preclude long walks that aren't visible.

 

I knew a guy who had a major back problem so he had a placquard. I was appalled that he used the darn thing when he WALKED FIVE MILES everyday! (I could understand during a flare up if he was having problems walking, but he used it all. the. time.) so, he can walk five miles a day, but not across a parking lot? those are the reason people get angry when they see someone who "looks" normal.

we also have a friend with a traumatic brain injury, and in a wheelchair, so he has a double wide parking space blocked off at his apartment so he can get out of his van. the neighbors were complaining they had two spots when there weren't that many. I suggested the neighbors were more than welcome to have the traumatic brain injury and let him to healthy. I'm sure he'd be happy to trade places with them.

[Moxie]

Also, the placebo effect is a real thing. Just because gluten free/chiropractor/prayer healed your cancer/foot fungus/depression, doesn't make it a cure.

[OH_Homeschooler]

I agree that that oranges comment probably belonged in a PM instead of where it appeared. However, it seemed to me just a guy saying something simple helped his loved one when there was no hope otherwise. (That person probably assumed the problem was kidney only, because that's the only failure the OP mentioned in that thread IIRC.) Hopefully the OP was not hurt by the comment. She's got lots worse to worry about than whether oranges are a radical cure or not.

 

I was glad that nobody was crass enough to junk up the sympathy thread with retorts about the oranges.

 

 

I'm glad it was out in the public for everyone to see. It seems most people are just ignoring it and not lending it any credibility. In that situation, I feel like if I had a PM I'd feel more obligated to respond, which is the last thing the OP needs to worry about right now.

 

 

And it is different receiving advice from someone who knows and loves you versus random strangers. I don't even appreciate receiving advice about how to "tame" my curly, curly hair from random strangers.

 

 

 

Mrs. Mungo, that's just horribly rude. What is wrong with people?

[Trish]

Well I get where your irritation comes from, but I also get why people want to share something that may or may not be helpful. Not speaking to your specific issues, but it's certainly possible that someone could give someone else an idea that they may never have come across or might work for them. So why not share it? I'd just appreciate the fact that they CARED enough to share, while knowing that you already have your medical direction mapped out. Whether the issue is medical, emotional, social, practical, etiquette, you-name-it, chances are 90-plus percent of the advice may be something you don't find useful, but you may be looking for the nugget that DOES help. Or sometimes it's just a nugget that helps put things in perspective. Or gives you a word or phrase to hang onto. Or a completely different way of looking at an irritating situation. (I'm thinking of Crazy In-Law Bingo...)

 

I mean, no one's going to force anyone to try Eye of Newt, but the fact that anyone cares enough about my (or anyone's) situation enough to read my thread, or try to post something helpful in it, is loving enough. In My Loving Opinion!

 

I wish I had something to offer to you, my hubby's a GI doc, but I think you're pretty much doing what you can do.

 

So I pray.

[Dandelion]

I agree with the general sentiment of Joanne's post. There are times when offering certain types of advice is not just unhelpful, but disrespectful as well. Even worse, it might actually exacerbate the pain someone is already feeling about their health issue.

 

That said, I think most of the people offering this advice truly do mean well. It's just that their timing and delivery may be completely inappropriate, given the context of a particular thread.

 

My family has benefited greatly from "non-mainstream" nutritional and medical approaches. My personal rule for the internet is that I only share that info if it's directly and specifically requested. That way, I know the recipient is actually interested and may benefit from it. With some of my IRL friends, I will share information even when it's not specifically requested - but we have that kind of relationship, and it goes both ways.