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

[goldberry]

 

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*

 

Although I usually agree with you, Mergath, I think it's just as disrespectful when others label something a fad or a joke when they haven't dealt with that personally themselves. It's great that you or your family haven't had a gluten problem. That doesn't mean no one else does or that it isn't real or just a fad.

 

That's like people that have never been depressed saying that depression isn't real or people need to "just get over it".

[NotSoObvious]

I try to be patient, especially since I feel like homeschooling is on the "alternative" end of things and I'm careful when I talk to ps moms about it.

However, after 8 years of infertility, if one more person tells me to "just change my diet," I might kick them in the head.

[jujsky]

That bugs me too. We (thankfully!) haven't dealt with severe medical issues, but I got it A LOT with DS's ADHD. We did everything we could except dietary changes. For several reasons, I know it won't work. I'm sorry you're going through so much garbage in your life.

[gardenmom5]

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.

 

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.

 

so have we. the most dramatic was 1ds. I had a school psycologist telling me his "tummy aches" were just stress and anxiety. at least she had the sense to shut up when I told her the local children's hospital where he'd been for treatment and testing didn't think so.

turned out he had a pinched nerve in his spine. it was diagnosed by a chiropractor - who used the western ped's x-ray to point out the fractured vertebra that caused it. for over two years, we'd dealt with a host of western docs, from peds to neuros, and several had seen that x-ray, and dismissed a healed fracture as irrelevant. the proof is in the pudding - with chiro, he was immediately asymptomatic (though did require regular adjustments to keep pressure off the nerve while he was growing), whereas before with western med we were pretty ineffectually treating his symptoms as they came up with IV's, narcotics and beta blockers .

Although I usually agree with you, Mergath, I think it's just as disrespectful when others label something a fad or a joke when they haven't dealt with that personally themselves. It's great that you or your family haven't had a gluten problem. That doesn't mean no one else does or that it isn't real or just a fad.

 

That's like people that have never been depressed saying that depression isn't real or people need to "just get over it".

 

I agree.

[ChocolateReignRemix]

Although I usually agree with you, Mergath, I think it's just as disrespectful when others label something a fad or a joke when they haven't dealt with that personally themselves. It's great that you or your family haven't had a gluten problem. That doesn't mean no one else does or that it isn't real or just a fad.

 

That's like people that have never been depressed saying that depression isn't real or people need to "just get over it".

 

 

While it shouldn't be a fad diet, it is certainly being treated as one by many as they are pushing it as a "cure" for conditions which have no relationship to gluten.

[Impish]

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.

Exactly. I've been fortunate and found my faith strengthened during this journey, rather than diminished...However, if I'd listened to those who say such things as, "I have my WHOLE CHURCH praying for you, you should be better by now! Are you SURE you accept Christ?" I don't know where I'd be. Of course, pointing out that Paul asked God to take the thorn from HIS flesh and was denied seems to completely flummox them. Either they get indignant and demand to know if I think my faith is on par w/Paul's (completely missing the point) or they stand there, blinking. *sigh*

 

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.

Yup.

[J-rap]

It can be really maddening! (I remember comments my husband and I got when we went for 4 years trying to conceive our first child). However, I do think people are very sincerely trying to help (at least most of the time!), and as long as scientists continue making new discoveries, I won’t completely close my eyes to alternative treatments. We are a family that has always gone with traditional, tried-and-true treatments, but now and then an alternative treatment has actually helped.

 

We will still stick with traditional treatments first, but I'm open to trying alternative treatments because sometimes there is a scientific explanation behind them that makes sense, and not all traditional doctors are aware of these yet.

 

But yeah, some comments seem totally wacky -- comments like “You must not have enough faith in God†-- absolutely disgusting!!!

[elfgivas]

:grouphug: it all works better if you do it when there is a full moon.... or when the tide is low..... or when there is no wind.... :grouphug:

 

or maybe

 

when the only tool you have is a hammer, every problem looks like a nail?

 

:grouphug:

ann

[tabinfl]

These things are not helpful and *often* add to the burden of the patient and family. I think people should understand that.

 

THIS is the thing that the "helpful" people miss. It is NOT simple to eliminate gluten (or dairy, or whatever), especially when feeding a family with young children. It is NOT easy to keep explaining to people why I'm not using the same "miracle diet" another church member was (unsuccessfully, in the end) using for her RA.

 

Everything has risks and side effects. I've heard that acupuncture is harmless and will help my RA pain (though studies show that it isn't terribly effective), but if I happen to land at an acupuncturist who doesn't have a good handle on sterile techique, while I'm taking immune suppressing drugs... hmmm, maybe not so harmless after all.

 

Herbs and "natural" remedies are not automatically safe -- they're chemicals too, just made by plants -- and can interact with other medications. I am struggling to keep up with my family's needs. Explaining this stuff over and over, because some people won't drop it without a good reason, uses up my spoons (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)!

[gardenmom5]

Exactly. I've been fortunate and found my faith strengthened during this journey, rather than diminished...However, if I'd listened to those who say such things as, "I have my WHOLE CHURCH praying for you, you should be better by now! Are you SURE you accept Christ?"

 

I"ve had my dealings with these types over other things, and I have been there.

 

I have come to believe those who say such things are in reality lacking in their own faith. they have wrapped themselves in their security blanket of "bad things only happen to bad people" and deluded themselves into thinking they "are good and faithful", so they are protected from bad things happening *to them*. (ah, reality bites.)

 

de-nile: it isn't just a river in egypt.

[Tiramisu]

This thread is making me wonder if I've ever posted anything that I may see as rather mainstream while others see it as extremely alternative.

 

I have posted that magnesium can help heart palpitations because it helped mine as well as other people's I know. I think there is since behind it because there's a role that magnesium plays in nerve function.

 

I also learned about gluten intolerance from two mainstream gi doctors, so I don't see it as alternative, but I would never claim it could cure everything. And I've personally felt the pressure about going GF. I tried it for a year and actually felt better once I added gluten back in. I wouldn't recommend GF across the board because of the impact it can have on lifestyle, especially for kids, but if a family tries it and it helps, I'm happy for them.

 

So, do I fall into the kook category?

[Χά�ων]

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.

 

 

 

I agree. Word for word, I agree. It drives me batty when someone acts as though my kid would be fine if I did X or didn't do Y and not one of them actually have a clue about what DS has.

[zoobie]

My mom's husband was dying of cancer for 2.5 years. His sister, who lived locally, showed up to "help" for the first time--after hospice had taken over his care. She appears at the door with all kinds of juices and was frustrated that my mom wasn't interested in trying to get an unconscious man with hours to live to drink a smoothie... Yeah. She also put calling cards in his coffin.

 

Anyway, there's a time for suggesting alternatives and a time for hugs and thoughts of peace.

[Tiramisu]

When dd's backbone slipped apart, I had a lot of pressure to take her to a chiropractor, though the orthopedist particularly warned me against it for dd's case. I contacted two recommended chiropractors and they were generous with their time in talking about dd's case. Once they heard with the MRI findings, both said no chiropractor in their right mind would touch a child in her condition and that she would need surgery. At that point, I felt relief to have a response whenever the chiropractor question came up.

 

I tried to keep it in perspective that the intentions were good, but it was hard because it was such a stressful time. Once I was rather harsh with a well-meaning friend of my mother's and I always regret that.

[gardenmom5]

Yeah. She also put calling cards in his coffin.

 

 

ah - so she wants people who attended the viewing/funeral to associate her with death? (that should be good for whatever business she's in.)

 

some people's children . . . . (rolls eyes)

[NorthwestMom]

She also put calling cards in his coffin.

 

 

 

:eek:

 

Hooooooly cow. I have now heard it all. I'm sorry you had to endure that.

[zoobie]

 

ah - so she wants people who attended the viewing/funeral to associate her with death? (that should be good for whatever business she's in.)

 

some people's children . . . . (rolls eyes)

 

No, like long distance calling cards! This was 1998. They were tucked in during the family viewing. His daughter added a sentimental stuffed animal, and his sister put in AT&T cards.

[gardenmom5]

No, like long distance calling cards! This was 1998. They were tucked in during the family viewing. His daughter added a sentimental stuffed animal, and his sister put in AT&T cards.

 

 

:huh: was he supposed to take them with him so he could call her long distance? wow. hope someone gave her a crystal ball to receive his "phone calls" (okay, that was supposed to be a joke.)

 

sounds like she has mental problems.

 

eta: you know, that when you said calling card, my first thought was those tiny paper business cards. I guess my age is showing. (that, and we almost never used calling cards.)

[AK_Mom4]

... Yeah. She also put calling cards in his coffin.

 

 

I guess that's one way to find out the truth about the afterlife.....

 

but who did she expect would be calling?

[Hwin]

This thread is making me wonder if I've ever posted anything that I may see as rather mainstream while others see it as extremely alternative.

 

I have posted that magnesium can help heart palpitations because it helped mine as well as other people's I know. I think there is since behind it because there's a role that magnesium plays in nerve function.

 

I also learned about gluten intolerance from two mainstream gi doctors, so I don't see it as alternative, but I would never claim it could cure everything. And I've personally felt the pressure about going GF. I tried it for a year and actually felt better once I added gluten back in. I wouldn't recommend GF across the board because of the impact it can have on lifestyle, especially for kids, but if a family tries it and it helps, I'm happy for them.

 

So, do I fall into the kook category?

 

 

I think it's when you post that magnesium will cure a congenital heart defect that you fall into the kook category.

 

I was the one to bring up GF, and it's only because I have a GF evangelist in my life. ;)

[speedmom4]

I haven't read all of the replies but I agree with the OP's feelings. There were so many people who gave "good" advice when ds was diagnosed with Cerebral Palsy. One man told me that if I hadn't given consent for a Hepatitis shot when ds was born my son would not have had a stroke during delivery. Not only was that hurtful it wasn't even logical. Many many people told me to pray for my son's brain damage to be miraculously healed. I am a Christian but those comments were not only offensive but hurtful a as well. I love my ds just as he is. He's perfect to me.

 

Don't even get me started on the helpful advice from people when ds was diagnosed with epilepsy. All I wanted was a hug not advice.

 

Elise in NC

[gardenmom5]

I think someone becomes a "kook" when they think one-size fits all. 30 years ago, I'd have had nothing to do with alternative treatments. Now, each kind has it's place, and with medicine there is no one-size fits all treatment plan.

 

I regard someone who pushes conventional treatment on someone who is happily doing alternative treatment as just as offensive as the alternative proponent pushing their favored treatment on someone happily receiving western style treatment.

[swellmomma]

I agree completely. There is a time and place to give advice, such as when someone asks, or is new to a Diagnosis and has not researched yet BUT there is a time to grieve and pray with the person and at those times posting things like eat oranges to cure end stage liver disease is rude and uncaring. Knowing, using and sharing info on alternative treatments are good, when offered at the right time and place.

[Crimson Wife]

 

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*

 

 

There are people who are using it as a faddish weight-loss diet, but that doesn't mean that the diet itself is a fad one. When the fad dieters have moved on to something else, those with gluten intolerance or celiac will still need to follow it (the same way those with other food allergies or intolerances have to avoid their problem ingredient).

[SKL]

I think someone becomes a "kook" when they think one-size fits all. 30 years ago, I'd have had nothing to do with alternative treatments. Now, each kind has it's place, and with medicine there is no one-size fits all treatment plan.

 

I regard someone who pushes conventional treatment on someone who is happily doing alternative treatment as just as offensive as the alternative proponent pushing their favored treatment on someone happily receiving western style treatment.

 

 

Yes, honestly, I see chemotherapy as an alternative medicine in some respects, i.e., when it makes the probability of life being miserable until death - and even death being accelerated - higher than the probability that the cancer will go away. And yet not only do people get eyerolls for suggesting/trying other things, but the law can even force people to administer this poison. Who decides when a suggestion is "kook" material or "good medicine"?

 

Although I agree that "cure all" remedies are generally bunk (I recall people trying to push blue algae, mangosteen, and probably others on me), a suggestion to eat more oranges? From someone who is not making money off said oranges? To treat an ailment that the guy thought sounded the same as his loved one's ailment? When the OP said there were NO other available options? Unless the guy was a troll, I don't understand getting riled up over this. There just isn't any hocus pocus in oranges.

 

FTR, I go to "mainstream" docs and "out of mainstream" docs, though mostly I avoid the doc as much as possible. Both types can sound kooky depending on the individual and the topic area. Both can and do misdiagnose and mis-prescribe. Diet does matter, though of course it's not the be-all and end-all. When I switched from conventional to organic milk, I noticed several significant good health effects. Is it wrong for me to tell people? Take it or leave it, right? We're all adults here.

[Crimson Wife]

 

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.

 

The problem is that the current lab testing can be unreliable. My DD was tested twice for celiac (2nd time with the extended panel) and wheat allergy (again 2nd time with an extended panel). Both times everything came back negative. Yet the dramatic "catch up" weight and height gain she experienced after switching to GF has led all her doctors to agree that she has non-celiac gluten intolerance. There may be a "placebo" effect in certain people, but there is no way a 3 y.o. can placebo her way into going from a size 18 mos. in December to a 4T in April.

[G5052]

I'm sorry that you're going through this.

 

We've been there. My family member has had over a decade of off-the-charts medical problems. We've spent probably well into six figures on medical bills, and he sees some of the top doctors in the country. And we truly have pursued *every* alternative medical approach. We're reasonably intelligent people, and I love him too much to not leave a single stone unturned.

 

And on Sunday one person told me that one issue would be cured if he took activated charcoal. Or maybe colliodal silver. She wasn't sure. And another said an inversion table would solve another issue. Sigh.

 

Banish the armchair medical experts!

[Crimson Wife]

And on Sunday one person told me that one issue would be cured if he took activated charcoal. Or maybe colliodal silver. She wasn't sure.

 

 

Colloidal silver is an actual germkiller (see here). I was given some silver cream by a MD for a deep finger cut that required stitches.

 

Now if you're talking ingesting the colloidal silver, there is little research to support that use.

[G5052]

 

Colloidal silver is an actual germkiller (see here). I was given some silver cream by a MD for a deep finger cut that required stitches.

 

Now if you're talking ingesting the colloidal silver, there is little research to support that use.

 

 

Yes, she said to ingest it. We've used it externally for years, but I knew that ingesting it was iffy, particuarly with a medically frail individual. And he's on a medication that specifically says *no* charcoal.

 

Oh, and people are always suggesting chiropractors too. Even though we remain skeptical, we spent thousands trying different ones at one point. No help at all. And that despite knowing that a one manipulated my father-in-law's spine when he had a spinal fracture. The complications led to his death. So we were reluctant, but tried. Truly.

[G5052]

I think sometimes people just want to be helpful. They mean well. And sometimes I think they really believe in some of those things. When my mother was diagnosed with ovarian cancer she had all kinds of suggestions from people. Someone even suggested she drink some weird stuff with shark cartilage in it or something.

 

 

Yes, some do mean well. For them, I just thank them for the advice and move on.

 

Others though have a know-it-all attitude. For those, I nip it in the bud. "No thank you, we're on top of it with those who have the expertise we need."

[Mama Geek]

I am not one to give alternative advice AFAIK However my dh spent the first 35 years of his life with health problems. Doctors never did anything for it or came up with an explanation. Years ago his sister who is a PhD but not of medicine sent him an article about Celiac. At that time he was unable to each much of anything without being sick. He decided to eliminated gluten for a week and felt so much better it wasn't funny, he never went back to eating gluten.

 

I have also met a few people that almost died, one of which had been diagnosed with cancer. You know what their real problem was...Gluten. The one lady never had cancer, we met and talked to her so this isn't a rumor that I hear from others. So how ever much doctors know, they don't always have the answers and if SIL didn't send an article about it, my dh could be in much worse shape today.

[Audrey]

When I see those suggestions, I do not think people are trying to dismiss the medical condition or anything. Do you want to know what I really think when I see those types of posts?

 

I think that so many people in your country are slammed by medical/insurance costs that many who struggle financially will go out of their way to try anything that will avoid having to see a doctor or seek conventional medical treatment. I cannot count the number of threads I've read just on this forum alone where someone is underinsured or uninsured or unable to pay the co-pays or whatever insurance doesn't cover -- and they are desperate for help for their kid or their husband or themselves. How many "should I go / take my kid to the doc/er?" threads are there in a month on here? Too many? Should you go? YES! If you have to ask, you should go! That wouldn't even be a question in my mind. But... can you afford to go? Well, that's not even a question to me either, but I know that IS the real question to almost every one of those kinds of threads.

 

I think "alternative medicine and therapies" are enjoying so much increased popularity simply because they are usually the least expensive "treatments" one can access. It makes me incredibly sad to see someone who obviously, desperately need serious conventional medical intervention go on about the diet or alternative therapy they are doing instead. They will defend their decision, too, often quite ferociously. They'll recommend it to others -- if more are doing it, that further validates their reasons for doing it. They'll have a million reasons for why they are doing it, except that the majority of the time, they won't admit that one big reason (or the main reason) is that they don't have the money and/or insurance to seek the conventional medical treatment they need. I have seen this played out with my own eyes and it breaks my heart.

 

So, when I read those posts... I don't get angry. I don't get annoyed. I don't think they're kooks. I think they're probably just average Americans struggling to live as best as they can manage.

[Crimson Wife]

I think "alternative medicine and therapies" are enjoying so much increased popularity simply because they are usually the least expensive "treatments" one can access. It makes me incredibly sad to see someone who obviously, desperately need serious conventional medical intervention go on about the diet or alternative therapy they are doing instead. They will defend their decision, too, often quite ferociously. They'll recommend it to others -- if more are doing it, that further validates their reasons for doing it. They'll have a million reasons for why they are doing it, except that the majority of the time, they won't admit that one big reason (or the main reason) is that they don't have the money and/or insurance to seek the conventional medical treatment they need. I have seen this played out with my own eyes and it breaks my heart.

 

Except that it has been my experience that it is affluent yuppies with good health insurance who are the most likely to be trying alternative treatments and/or special diets. The "

" YouTube video is a hilarious sendup of this demographic.

[Χά�ων]

I think sometimes people just want to be helpful. They mean well. And sometimes I think they really believe in some of those things.

 

Possibly. I can almost see that if I try really hard, but that does not make my desire to just punch the next person who does not even bother to do a quick google search before they open their mouth and act as though If I only try this one thing, my son would be cured. Even worse are those who completely deny that there could be anything at all wrong. I do not care about the reason WHY they do it, I just want them to shut up. They may be well meaning but really if I thought it would stop my son's pain I would do it. I do not enjoy watching my son suffer and I would prefer it if people would not act like they know it all.

 

I have to bow out because this topic seems to be a trigger for me.

[Alessandra]

Joanne -- I am sorry for what you are going through. I had no idea that people gave medical advice about such serious and complex conditions.

[ChocolateReignRemix]

When I see those suggestions, I do not think people are trying to dismiss the medical condition or anything. Do you want to know what I really think when I see those types of posts?

 

I think that so many people in your country are slammed by medical/insurance costs that many who struggle financially will go out of their way to try anything that will avoid having to see a doctor or seek conventional medical treatment. I cannot count the number of threads I've read just on this forum alone where someone is underinsured or uninsured or unable to pay the co-pays or whatever insurance doesn't cover -- and they are desperate for help for their kid or their husband or themselves. How many "should I go / take my kid to the doc/er?" threads are there in a month on here? Too many? Should you go? YES! If you have to ask, you should go! That wouldn't even be a question in my mind. But... can you afford to go? Well, that's not even a question to me either, but I know that IS the real question to almost every one of those kinds of threads.

 

I think "alternative medicine and therapies" are enjoying so much increased popularity simply because they are usually the least expensive "treatments" one can access. It makes me incredibly sad to see someone who obviously, desperately need serious conventional medical intervention go on about the diet or alternative therapy they are doing instead. They will defend their decision, too, often quite ferociously. They'll recommend it to others -- if more are doing it, that further validates their reasons for doing it. They'll have a million reasons for why they are doing it, except that the majority of the time, they won't admit that one big reason (or the main reason) is that they don't have the money and/or insurance to seek the conventional medical treatment they need. I have seen this played out with my own eyes and it breaks my heart.

 

So, when I read those posts... I don't get angry. I don't get annoyed. I don't think they're kooks. I think they're probably just average Americans struggling to live as best as they can manage.

 

Yeah, except I have seen my fair share of woo from those from other countries way too often to buy into your claim. Nice try at making this about how awful the US is though.

[SKL]

 

Except that it has been my experience that it is affluent yuppies with good health insurance who are the most likely to be trying alternative treatments and/or special diets.

 

It might be a mixture of folks at both ends of the spectrum.

 

Fact is, conventional medicine has disappointed many of us time and again. And "alternative" approaches are not all hogwash. Many times they just don't have the deep marketing / research pockets to bring their bona fide solution to market. Often the "conventional" docs fight to keep them down. An example is my kid's ophthalmologist vs. her vision therapist. The former tried very hard to talk me out of listening to the latter. Yet guess who got my kid's eyes to work so she could read?

 

The cost factor is probably a wash much of the time. The cost is lower than going to a series of MDs, yet it's more likely to be out-of-pocket. We still pay for insurance to cover the times when we do decide to go to the MD. No money saving over here. But I feel like my kids' chiropractor and therapists are doing something vs. taking $hundreds just to spend a minute looking at her. Also, the fact is that some of the diet suggestions etc. are based in good science. As an educated woman, I'm able to judge which ones make sense and which don't. I feel no pressure but a lot of collaboration from the "alternative" side of the spectrum. While the MDs disrespect me time and again.

[Audrey]

Yeah, except I have seen my fair share of woo from those from other countries way too often to buy into your claim. Nice try at making this about how awful the US is though.

 

You missed my point entirely. This board is mostly Americans. I KNOW how tough it is financially and insurance-wise because I'm from there and have family struggling with the same things that so many other people on this board are struggling with in that regard.

 

My point is that *I* don't think people are trying to be hurtful when they offer "alternative" advice. I think it's because they're doing it themselves because they can't afford conventional sources, and THAT is why that type of advice gets thrown at people like Joanne.

 

And, yes... alternative-devotees are everywhere, and in every income bracket. My POINT was that ON THIS BOARD, it seems that what I described in my PP is what is going on here.

[Dandelion]

 

It might be a mixture of folks at both ends of the spectrum.

 

Fact is, conventional medicine has disappointed many of us time and again. And "alternative" approaches are not all hogwash. Many times they just don't have the deep marketing / research pockets to bring their bona fide solution to market. Often the "conventional" docs fight to keep them down.

 

Also, the fact is that some of the diet suggestions etc. are based in good science. As an educated woman, I'm able to judge which ones make sense and which don't. I feel no pressure but a lot of collaboration from the "alternative" side of the spectrum. While the MDs disrespect me time and again.

 

 

Exactly. I'm sure cost is a driving factor for some, but everyone I know IRL who is pursuing alternative approaches is doing so because of disappointment and lack of results with conventional medicine. Myself included.

[SKL]

You missed my point entirely. This board is mostly Americans. I KNOW how tough it is financially and insurance-wise because I'm from there and have family struggling with the same things that so many other people on this board are struggling with in that regard.

 

My point is that *I* don't think people are trying to be hurtful when they offer "alternative" advice. I think it's because they're doing it themselves because they can't afford conventional sources, and THAT is why that type of advice gets thrown at people like Joanne.

 

And, yes... alternative-devotees are everywhere, and in every income bracket. My POINT was that ON THIS BOARD, it seems that what I described in my PP is what is going on here.

 

 

IIRC the dude who suggested the oranges is in Colombia.

 

My friends from India also have lots of faith in non-conventional approaches. Which I hesitate to judge, because I do not know how well they have been vetted. Seems to me the tradition goes back pretty far with a pretty big population, so if things didn't work, folks would have noticed by now. But these don't tend to be the "quick fixes" Americans tend to want.

[FaithManor]

Okay, I'm going to try to turn this around, because again, it's gotten off topic with everybody defending whatever decisions they've made for their families. Sigh...

 

The OP has a husband with an advanced liver problem and no amount of changing this, that, or the other thing is going to change it. Doesn't matter how badly you want x,y, or z to be the cure, sorry...he needs a liver transplant. What she needs is love and support, prayers if that meshes with your faith system, good thoughts, light a candle, or other if prayer doesn't work for you.

 

This isn't an uniquely American issue though I do see some issues. The reality of high deductibles in which the insurance company disallows every single thing it can possibly disallow so you CAN'T meet your deductible is an issue for some people.

 

Look, if people post, "Do you have experience with X and do you know of something that might work?", this is an indication of someone looking at options, looking for advice, needing to entertain non-mainstream options. If a person says, "My heart is broken, my relative has X," this is NOT a plea for unwanted advice.

 

And yes, I speak from experience. DS has a congenital tricuspid valve prolapse. I refuse to say more, because frankly, I'm not open to more "you are an incompetant parent because you don't give him massive doses of vitamin E" comments. Suffice it to say, I've even had people recommend very dangerous, possibly life-threatening "treatments". My guess is that the modern view of "I'm entitled to my opinion," is now taken to the ultimate extreme and we might be well-served to go back to a more "victorian" view of politeness.

 

So, it would be really helpful for people going through this if the thread could just be taken as a heads up...if the person isn't asking for specific information, please just volunteer compassion and support. If the poster needs help with research, he or she will ask for that specifically.

 

Faith

[SKL]

 

So, it would be really helpful for people going through this if the thread could just be taken as a heads up...if the person isn't asking for specific information, please just volunteer compassion and support. If the poster needs help with research, he or she will ask for that specifically.

 

Faith

 

 

To be fair, most of the people did just volunteer compassion and support. I only saw one incident of what is discussed in this thread.

 

It does depend on how the thread is worded. That was clearly a grief thread. Not all threads about medical problems are.

[Mrs Mungo]

So, it would be really helpful for people going through this if the thread could just be taken as a heads up...if the person isn't asking for specific information, please just volunteer compassion and support. If the poster needs help with research, he or she will ask for that specifically.

 

 

Right. We *know* people just mean well. They don't know they are doing harm, unless they are told, correct? That's the point here.

[unsinkable]

So...was this thread about Joanne or Lanny posting about the oranges?

 

 

[SKL]

So...was this thread about Joanne or Lanny posting about the oranges?

 

 

I got the impression that the oranges were a trigger that loosed some pent-up frustrations.

[unsinkable]

 

 

I got the impression that the oranges were a trigger that loosed some pent-up frustrations.

 

 

That is totally understandable.

[ChocolateReignRemix]

You missed my point entirely. This board is mostly Americans. I KNOW how tough it is financially and insurance-wise because I'm from there and have family struggling with the same things that so many other people on this board are struggling with in that regard.

 

My point is that *I* don't think people are trying to be hurtful when they offer "alternative" advice. I think it's because they're doing it themselves because they can't afford conventional sources, and THAT is why that type of advice gets thrown at people like Joanne.

 

And, yes... alternative-devotees are everywhere, and in every income bracket. My POINT was that ON THIS BOARD, it seems that what I described in my PP is what is going on here.

 

 

I disagree both on this board and IRL.

[*Lulu*]

 

 

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.

 

 

 

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.

 

 

I think this is in a whole 'nother category of tripe from *ahem* helpful medical advice.

 

I've been on the receiving end of both kinds, but "public school cures Asperger's", or, "a vitamin can cure infertility" have an entirely different feel from, "your PTSD is acctually the Holy Spirit convicting you to confess your sin from being s*xually abused."

[*Lulu*]

I do agree Joanne though. Not saying I don't. Sometimes I say dumb stuff when I really should just be quiet because I dunno, I feel like I should just say something.

 

 

IME, people who just say something because they do not know what else to do come across differently from the people who live to tell you how to "do it right". Advice from the latter comes off more as a command from on high and woe be unto you should you ignore it.

[Joanne]

To be fair, most of the people did just volunteer compassion and support. I only saw one incident of what is discussed in this thread.

 

It does depend on how the thread is worded. That was clearly a grief thread. Not all threads about medical problems are.

 

 

I haven't agreed with any of your posts in this thread, but I do this one.

 

I didn't think to be clear but the alternative/extreme advice that bothers me is in threads in which posters (Myself and others) seek to merely update people we've know for years or seek support.

 

Threads asking for advice or ideas you can bring on the range of ideas.

 

But a thread about a dying young father? A terminal older husband? Children with chronic health issues? Please, your "cures" and "suggestions" may well add to the stress rather than alleviate. Trust that we are seeking appropriate care from the appropriate providers. To offer UNsolicited medical advice in those circumstances is rude and unkind.