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

[mommymilkies]

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.

 

 

 

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.

 

 

I agree. I have a medical background. My (then) 6 year old stopped growing. We knew something was wrong. My 3 yo was bigger than her and she was sickly. But still doctors refused to even test her for anything. We went through that for years until I FINALLY found a doctor who happened to listen to us. She totally diagnosed her on a whim of random things to test for. Our doc had just had experience personally with two of them in her own life, so figured it was worth a shot. She has profound Hashimoto's that will permanently affect her because of how long she went untreated. So yes, I am that annoying person who recommends every person under God's blue skies to have their thyroid tested. I also recommend almost everyone try going gluten free for their range of symptoms. Because that was the final straw to get my dd to grow. The Synthroid kind of worked, but going gf, in two of our doctors' opinions, really helped save her. It was night and day, and that was after her bloodwork showed something funny, but not Celiac's. it has cured so much for my family-another dd with severe GI issues we couldn't figure out, my dh who is type 1 diabetic. It is linked to so much through real honest to goodness scientific studies, that I get fpdefensive when people call it a fad diet. It most certainly is not, though some people are increasingly trying to use it to lose weight. Probably because it helps. Scientists believe there are 6% or 18 million people with gluten intolerance. http://www.huffingtonpost.com/sz-berg/celiac-disease_b_1770781.html

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.

 

 

I agree. I certainly don't mean to annoy when I offer suggestions. It is only through people intervening with their own medical issues that allowed us to figure out dd's problems. I think there is a fine line between supportive suggestions (oh, you have muscle cramps? Have you retried magnesium?) and telling someone they're irresponsible for not trying magnets/colloidal silver/whatever. I am sorry to hear there are that many pushy people out there.

[SKL]

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

 

I didn't think to be clearm 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 vrom the appropriate providers. To offer UNsolicited medical advice in those circumsatnces is rude and unkind.

 

 

In general I agree with you, and I doubt I'm one of the culprits you're thinking of. I am in no way a pusher of medical anything. I'm a tax consultant. But if I have a personal experience that I feel could be directly useful in your situation, I might just mention it in case nobody else has. It would feel unkind not to IMO.

 

Everyone is different, and no one approach is going to have the same effect on all humans. Obviously the fact that something works for me doesn't mean it will work for you. But putting it out there for your consideration is pretty benign IMO. You are always free to ignore it.

[Tokyomarie]

 

 

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.

 

 

In this case, it's likely the guy was taking advantage of the convenience of having the tag for times when he truly needed it and using it when he didn't need it.

 

Having spent several months last summer taking care of my disabled parents (Mom who has since passed on and Dad who can no longer drive & uses a cane or walker), I became aware that there are times when a perfectly normal person will jump out of a car parked in a handicapped spot and run into a building. It looks suspicious but in reality there are times when that perfectly normal person has gone in to retrieve a friend or family member who is disabled. I felt terribly conspicuous on a number of occasions when I was picking up my parents after their appointment or activity.

[Impish]

I find that often, ppl say things b/c of wanting to help...which is understandable, but if they thought a bit about what the other person actually *needs* they might refrain, at least for a less stressful, anxious, frightening time.

[Catwoman]

My personal feeling on the topic is that if someone posts to specifically state that they have tried all kinds of treatments for XYZ, but nothing is working and they're looking for other options, then all bets are off and people can post all the suggestions they'd like -- kooky or not -- because the OP is desperate and is willing to look into any and all options. (But even then, I have absolutely no patience for the horribly tactless and insensitive posts that tell the OP that things would have been different if she had only done ABC right at the start, or that the OP wouldn't even be dealing with the problem if she hadn't been such an idiot to vaccinate her child, feed the kid a little sugar now and then, or any number of other popular accusations. Blame has no place in a thread where someone is asking for help.)

 

OTOH, if the OP says she is looking for hugs or prayers or positive thoughts, people shouldn't assume that she is also looking for treatment advice. If you have an idea of something that might help, by all means, add to your post that if she wants a few suggestions, to feel free to send you a PM, but don't go into details in your post. That way, you're leaving the ball in the OP's court. If she wants to hear your advice, she'll contact you. Otherwise, pray for her or send her a hug or whatever, but don't try to force information down her throat when that's not what she asked for.

[Crimson Wife]

But a thread about a dying young father? A terminal older husband? Children with chronic health issues?

 

A terminal illness is very different from a chronic medical condition. Individuals with chronic conditions may improve with the right treatment (allopathic, complementary, or some combo of the two). Maybe they'll never be fully restored to health, but their situation isn't hopeless.

[sewingmama]

As a person diagnosed with clinical depression ie caused by chemical imbalances that don't work right - I will smack the next person that tells me to take vitamin D and excercise more. Yes I tried it and no it didn't work. Funnily enough the medication the doctor gave me did work and I can feel like a normal person again.

[Liz CA]

Just take what is potentially helpful and leave the rest.

[*Lulu*]

Just take what is potential helpful and leave the rest.

 

That is good advice for most things in life.

[gardenmom5]

Having spent several months last summer taking care of my disabled parents (Mom who has since passed on and Dad who can no longer drive & uses a cane or walker), I became aware that there are times when a perfectly normal person will jump out of a car parked in a handicapped spot and run into a building. It looks suspicious but in reality there are times when that perfectly normal person has gone in to retrieve a friend or family member who is disabled. I felt terribly conspicuous on a number of occasions when I was picking up my parents after their appointment or activity.

and I did the same thing with my mother prior to her death. there is one huge difference. this guy was . . . . . basically bragging about doing it.

[Tokyomarie]

and I did the same thing with my mother prior to her death. there is one huge difference. this guy was . . . . . basically bragging about doing it.

 

 

I realized this was what you might be saying, and is the reason why I prefaced my other comments with a statement about it. Many people who haven't had to care for a disabled relative or friend may not think of the possibility I mentioned when they see an obviously able bodied person walk quickly away from a car parked in a handicapped spot.

[Tokyomarie]

and I did the same thing with my mother prior to her death. there is one huge difference. this guy was . . . . . basically bragging about doing it.

 

 

I realized this was what you might be saying, and is the reason why I prefaced my other comments with a statement about it. Many people who haven't had to care for a disabled relative or friend may not think of the possibility I mentioned when they see an obviously able bodied person walk quickly away from a car parked in a handicapped spot.

[Mommyof4ks]

It is hard in the midst of a crisis to handle things that deviate from your plan. I have been on both sides of the issue. People told me that French fries caused my son's cancer and all I needed to do was feed him green smoothies and vitamins and he would be healed. Um yea, because doctors want to poison kids, I don't think so. Even the docs suggested non-traditional things to help with side effects, and those helped him a lot, but they did not treat his cancer. OTOH, doctors have over medicated my asthmatic to the point of harm when all I needed to do was figure out his food and environmental allergies to keep him from having asthma attacks, and he only takes meds a couple of times a year when he has a cold during a high mold season. I really think people are trying to be helpful, but when emotions are running high it is hard to accept that.

[KungFuPanda]

 

 

I realized this was what you might be saying, and is the reason why I prefaced my other comments with a statement about it. Many people who haven't had to care for a disabled relative or friend may not think of the possibility I mentioned when they see an obviously able bodied person walk quickly away from a car parked in a handicapped spot.

 

 

I've driven somewhere with my son, parked in the handicapped spot, and unloaded both boy and wheelchair to go into the building. No funny looks there. However, my husband HAS picked up my son so I could go do something else. This means I hop into my car and take off alone. I've probably gotten a few looks over that one.

[Mergath]

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".

 

Don't get me wrong, I don't think it's a fad diet for people who actually have a medical condition that requires them to go GF. But I get so sick of people screeching that gluten is bad for everyone and going GF will magically cure your ADD/joint pain/hair loss/ear infection/UTI/and on and on ad nauseum. People who have preschoolers who act like preschoolers think that taking their kid off gluten will make them magically able to sit at a table and do written work for hours on end. And I don't know how many times I've heard a parent freaking out because their kid has been a monster all day and the parent says, "Oh, someone must have given him something with gluten in it!" Yeah, or maybe your kid is just overtired. Or having a bad day. You can't even have a conversation about parenting now because inevitably someone will say, "Oh, you just need to go GF!"

 

I'll stop there... I think everyone gets the idea. :p

[Catwoman]

 

Don't get me wrong, I don't think it's a fad diet for people who actually have a medical condition that requires them to go GF. But I get so sick of people screeching that gluten is bad for everyone and going GF will magically cure your ADD/joint pain/hair loss/ear infection/UTI/and on and on ad nauseum. People who have preschoolers who act like preschoolers think that taking their kid off gluten will make them magically able to sit at a table and do written work for hours on end. And I don't know how many times I've heard a parent freaking out because their kid has been a monster all day and the parent says, "Oh, someone must have given him something with gluten in it!" Yeah, or maybe your kid is just overtired. Or having a bad day. You can't even have a conversation about parenting now because inevitably someone will say, "Oh, you just need to go GF!"

 

I'll stop there... I think everyone gets the idea. :p

 

I know what you mean.

 

Right now, gluten is the buzzword. It used to be sugar. And then it was food dyes. :glare:

 

The sad thing is, when people start fixating on something like, "It must be gluten," it minimizes and trivializes the difficulties of the people for whom gluten (or sugar, or food dye, or any number of other things) is a real problem, and people don't take their concerns seriously.

[shanvan]

 

Don't get me wrong, I don't think it's a fad diet for people who actually have a medical condition that requires them to go GF. But I get so sick of people screeching that gluten is bad for everyone and going GF will magically cure your ADD/joint pain/hair loss/ear infection/UTI/and on and on ad nauseum. People who have preschoolers who act like preschoolers think that taking their kid off gluten will make them magically able to sit at a table and do written work for hours on end. And I don't know how many times I've heard a parent freaking out because their kid has been a monster all day and the parent says, "Oh, someone must have given him something with gluten in it!" Yeah, or maybe your kid is just overtired. Or having a bad day. You can't even have a conversation about parenting now because inevitably someone will say, "Oh, you just need to go GF!"

 

I'll stop there... I think everyone gets the idea. :p

 

 

Oh, my! This completely describes my brother's childhood. When I misbehaved, I got punished. Him? Someone must have given him something with food dye and he just can't help it. Ah, good times...

[Parrothead]

I'm another that is often told that going GF will cure my many medical issues, a few of which are inherited conditions.

[SKL]

TBH, I find GF intriguing, but I'm too lazy to try it. Much too lazy.

 

Probably that lazy side of my personality is what's causing all my problems in the first place.

[TranquilMind]

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

 

Me too!

 

I've learned about some very interesting diet and other things in this and other forums. I don't want that to stop.

 

I think it's best to assume the best of everyone, and take in the wheat and spit out the chaff (after actual consideration as to whether it truly is chaff or not.).

[TranquilMind]

TBH, I find GF intriguing, but I'm too lazy to try it. Much too lazy.

 

Probably that lazy side of my personality is what's causing all my problems in the first place.

 

You know, I gotta admit that I do feel better when I avoid grains, or eat gluten free stuff. This has become a realization in the last few years.

 

Who knew? If no one ever told me, I never would have paid attention.

[Joanne]

Just take what is potentially helpful and leave the rest.

 

 

Yea, not feeling it. Not in a thread for support, hugs, and to share updates about a very specific, very serious medical issue.

 

In a thread soliciting advice or feedback? Of course.

 

It just seems intuitive to me that certain threads are not places for alternative (or even allopathic) medical advice. The families I am thinking of, including myself, have been ALL OVER the medical scene for months or years.

[Impish]

When showing someone you care, it should be about how the recipient needs to feel, not about what the giver wants to feel, if that makes sense.

[weddell]

 

The sad thing is, when people start fixating on something like, "It must be gluten," it minimizes and trivializes the difficulties of the people for whom gluten (or sugar, or food dye, or any number of other things) is a real problem, and people don't take their concerns seriously.

 

 

Yep. My two children both have conditions that are like this. They have real, verifiable medical problems, most likely inherited from DH. But it's one of those things that the kooky people claim they have and "cured" by doing xyz. I know people (for the most part) are trying to help but it just comes off as trivializing.

 

I totally believe that going GF is helpful for people with certain medical conditions and that the kind of vague sounding "gluten intolerance" is completely real. But I also believe that half the people following a GF diet don't really have those medical conditions. Of course they are free to follow any diet they want, but I'm not sure it is a cure-all wonder diet either.

[SKL]

 

 

Yea, not feeling it. Not in a thread for support, hugs, and to share updates about a very specific, very serious medical issue.

 

In a thread soliciting advice or feedback? Of course.

 

It just seems intuitive to me that certain threads are not places for alternative (or even allopathic) medical advice. The families I am thinking of, including myself, have been ALL OVER the medical scene for months or years.

 

 

When you get these alleged obnoxious suggestions, are they usually from people who "know" you on the boards or folks who haven't been following your story over time? You can't assume that everyone seeing your post knows your history and state of mind well enough to gauge what you may or may not want to hear, unless you are clear about it up-front in that particular post.

 

And for those who have seen certain posters' many posts about the same issue over time, one gets the impression you want to talk about it, not just put out a one-sided post. Those who are familiar with the ongoing issue and seeing you share it freely over time are likely to feel welcome to mention a possible help they may know of.

 

As I've said before, I have very rarely seen the obnoxious type of posts that people are complaining of here. I had one person that I can recall e-diagnose me or my kid with a yeast infection, but that is a rare case as far as I've seen. I also don't see the "God is angry at you" stuff on here. If it does appear on rare occasion, you have to expect that on a very diverse and open forum. It's their problem, not yours. Giving all the boardies a lesson in forum etiquette because of the rare Orange Guy seems a bit overboard to me. As for comments such as "vitamin D worked for me in a similar situation," we might as well shut down the forums if people aren't allowed to share to that extent.

[Halftime Hope]

: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.

 

If this thread was prompted by the oranges post by Lanny, he did exactly what ColoradoPerkins suggests. His was a very thoughtful post: "maybe this would help, but regardless of what you choose to do, we are praying for you and wishing the best for you and your family in this awful situation." His tone was entirely appropriate, imo. If someone is going to get offended because this just isn't the time to "trivialize" by offering alternatives, I'm going to have to ask when a better time would be? After the loved one is gone? Personally, I would choose to look at that post as a love offering from one human being to another. He took the time to write something that he knew could cause people to think of him in a less favorable light, but he did it because he really connected with the woman's pain and suffering as she faces her husband's death.

[Wildcat]

If this thread was prompted by the oranges post by Lanny, he did exactly what ColoradoPerkins suggests. His was a very thoughtful post: "maybe this would help, but regardless of what you choose to do, we are praying for you and wishing the best for you and your family in this awful situation." His tone was entirely appropriate, imo. If someone is going to get offended because this just isn't the time to "trivialize" by offering alternatives, I'm going to have to ask when a better time would be? After the loved one is gone? Personally, I would choose to look at that post as a love offering from one human being to another. He took the time to write something that he knew could cause people to think of him in a less favorable light, but he did it because he really connected with the woman's pain and suffering as she faces her husband's death.

 

I agree with this. I'm so sorry Joanne, that you and others are/would be upset by someone offering an alternative in such a manner. I tried not to post in this thread because I have not been in the situation where I people have offered advice, but I agree with Valerie in that if an idea was suggested to me in such a way as the oranges post, I hope I could find it in me to be appreciative.

 

However, many of the stories in this thread have me wanting to shake the person who spoke the words. Epilepsy caused by demons? I can't comprehend that is still believed in this day and age. Well, I can, but geez.

 

As an aside, way back when the internet was in its infancy and AOL was "THE" place, I was on a board where someone posted a very sad update about a child. All the doctors had been exhausted, etc. Someone from across the country made a very nice "I'm so sorry" post and included a 'by the way, this is way out there, but I know someone who...'. I can't remember what it was, it had something to do with alternative medicine, and the OP with the sick child was grasping. She flew herself and child across the country to meet with the alternative medicine person and long story short, her daughter ended up fine/in remission/cured (I can't remember exactly what). The OP was so emotional and so appreciative of the other person for so long, it was obvious. I was on that board for a few more years and they ended up being friends and visited each other. That was my first experience in how the internet brings together people with ideas & suggestions that just might help. Doctors, even the best ones, just don't know everything about how our bodies work, and sometimes that "last ditch crazy effort" just might be the solution.

 

Again, I'm sorry something like this upset so many people, and I know that there are horror stories of clueless and ignorant people but I think if I was in a situation of ''no hope' I would want to hear a story where something like eating oranges or something helped even one person. Because if it helped one person, maybe it could help two or three. If traditional medicine isn't being shunned because of something like that, what could it hurt to try?

 

:grouphug: :grouphug: To everyone who has been upset by clueless people, and :grouphug: :grouphug: to those who are well meaning and 'put themselves out there' knowing they may cause further upset, but do so anyway just in case it makes a difference.

[4everHis]

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 guess I'm not sure what's expected. At any given time there are close to 1,000 people roaming this forum and many times people say "Dr. Hive, help please." I would expect that in a room of 5 people you would get 5 different ideas, multiply that. . . Maybe the questions should be more specific? "Dr. Alternative Hive", "Dr. Standard Medicine Hive" "Dr. If You are Suffering from 'Specific Thing' Hive" ?

I can't imagine that anyone would intentionally want to irritate/hurt/annoy anyone that is already suffering. When it's thrown out to the crowd, what I've seen happen, here and on other forums, is exactly what happens. . . .multiple remedies/ideas.

 

edited to add: In regards to the thread that this is obviously addressing. . . that wasn't a 'Dr. Hive help me' thread and I can see where the advise might seem out of place though it was thoughtfully and kindly offered.

[gardenmom5]

I also don't see the "God is angry at you" stuff on here. If it does appear on rare occasion, you have to expect that on a very diverse and open forum. n.

 

those come in pm's. and I did have someone pm me once about my then *4yo* son suggesting he was possessed by demons. uh, no.

[klmama]

.

[Joanne]

 

A terminal illness is very different from a chronic medical condition. Individuals with chronic conditions may improve with the right treatment (allopathic, complementary, or some combo of the two). Maybe they'll never be fully restored to health, but their situation isn't hopeless.

 

Very different in terms of the feelings expressed by my OP? Not really. If the thread (or in person conversation, or other media) isn't asking for advice, many of the frustrating elements remain. My dd's issue is chronic, my husbands is both chronic and terminal.

 

With my dd, I still have spend many, many hours engaged with top medical professionals and engaged with research on her issue. To be told "avoid nightshades" is on some days a minor annoyance. On others? A much stronger adjective. ;)

[FaithManor]

those come in pm's. and I did have someone pm me once about my then *4yo* son suggesting he was possessed by demons. uh, no.

 

PM's are definitely where I've experienced it. I was PM'ed and told the reason ds has a heart condition is because dh and I sinned at some point shortly before or after his conception.

 

I didn't dignify it with a response.

 

But, I have seen people just simply expressing sorrow, deep, grieving sorrow who clearly aren't asking for advice. These are the situations in which one could simply say words of nurture and compassion...one could, if compelled, say "I may know of something that might help if interested. PM me if you'd like to talk." That leaves it in the poster's court.

 

It's not so much about regular posts. It's just that we have a few people who are facing losing a loved one and it's an inevitability. They reach out for emotional support and can be inundated with so much information it just can't be processed. It feels like judgmentalism..."You haven't tried hard enough to heal your loved one." If you haven't been there, then it might be difficult to imagine, but trust me it gets so.hard.to.take - it's why some of us shut down. After about 15 PM's, and I've NEVER shared in any depth concerning ds's heart issue, indicating we were lousy Christians and this is why it was happening to him, I thought to myself "NEVER AGAIN!"

 

So, I think the main thing is well, something for us all to consider...discernment.

 

Joanne's reference isn't only to the orange post. She's been inundated prior with lots and lots of medical advice and well, Adrian's condition has progressed to the point that really, it's beyond anything we could have to offer. That's the hardest place in the world to be...no options, no path, no way to make it better. That's the point in your life when you need people to just simply be there. Stop trying to fix it because it can't be fixed. Just be.

 

Dh and I have been there before. I can honestly say that it was such a dark time because IRL only one, single human being got that. My sister - the psychologist/social worker. She was the only one who could accept this was it...his dad was going to die of cancer and it was a train we could not get off and he was going to die horribly, by inches. She was the only person we could lean on. Thank God for her! Everyone else just kept telling us we weren't trying hard enough, doing enough, pouring enough this, that, and the other thing into him and making his mother desolve into a quivering mass. I began to hate people in general for a time.

 

I know it's hard to understand if you've never been there. But, I get Joanne's heart and intent in her post. She's not angry with the board, she's not suggesting that there is never a time for giving advice, she's just stating that sometimes we need to exercise discernment because there comes a point at which all there is left to do is give love, support, and compassion. It's the only medicine there is.

 

Just like our dear Pamela in Texas. Done with the advice. There isn't any magical do this or do that which can possibly help her feel better today, or make this easier, or make her get over it. There isn't any healing for this. Our dear boardie, God bless her please today, just has to go through it. She can't go around it, over it, beside it, or under it. That is sometimes the worst thing we have to accept in the name of friendship. Sometimes we.can't.fix.it. I think that goes against our natures as mothers.

 

:grouphug: :grouphug: To everyone experiencing the dark side today, may God be merciful, and if that doesn't give you comfort because that is not a part of your faith system, then please know that one boardie understands and holds you in her highest thoughts today.

 

Faith

[Joanne]

I guess I'm not sure what's expected. At any given time there are close to 1,000 people roaming this forum and many times people say "Dr. Hive, help please." I would expect that in a room of 5 people you would get 5 different ideas, multiply that. . . Maybe the questions should be more specific? "Dr. Alternative Hive", "Dr. Standard Medicine Hive" "Dr. If You are Suffering from 'Specific Thing' Hive" ?

I can't imagine that anyone would intentionally want to irritate/hurt/annoy anyone that is already suffering. When it's thrown out to the crowd, what I've seen happen, here and on other forums, is exactly what happens. . . .multiple remedies/ideas.

 

edited to add: In regards to the thread that this is obviously addressing. . . that wasn't a 'Dr. Hive help me' thread and I can see where the advise might seem out of place though it was thoughtfully and kindly offered.

 

 

 

As I have shared, when it IS for advice or seeking ideas, I welcome and accept the range. In those cases, I do "take what works and leave the rest."

 

But sharing updates on known medical issues? It's not the same intent of the thread.

[Halftime Hope]

 

Very different in terms of the feelings expressed by my OP? Not really. If the thread (or in person conversation, or other media) isn't asking for advice, many of the frustrating elements remain. My dd's issue is chronic, my husbands is both chronic and terminal.

 

With my dd, I still have spend many, many hours engaged with top medical professionals and engaged with research on her issue. To be told "avoid nightshades" is on some days a minor annoyance. On others? A much stronger adjective. ;)

 

So maybe the take away message for me and for others who are 1) both willing to try alternative things, and 2) who have the gift of mercy--we really do share in the sorrows of others and take on their hurts as though they were our own, is that above all, we need to be very sensitive to the emotions and words of those who share, and try to feel out whether they want a sympathetic ear or a solution. That's much easier said than done IRL than on the forums, unless the poster is pre-educated on how to label their post. Sigh!

[Scarlett]

Luke died last night. :(

[unsinkable]

I don't know where all these finger pointing PMs are coming from.

 

I never got ONE blaming PM from anyone, even tho' I've shared about my DD's epilepsy for years.

 

I want to reassure people that if you do share a medical problem, it doesn't necessarily mean your PM box is going to fill up with exorcism invitations...

 

 

[Joanne]

 

When you get these alleged obnoxious suggestions, are they usually from people who "know" you on the boards or folks who haven't been following your story over time? You can't assume that everyone seeing your post knows your history and state of mind well enough to gauge what you may or may not want to hear, unless you are clear about it up-front in that particular post.

 

And for those who have seen certain posters' many posts about the same issue over time, one gets the impression you want to talk about it, not just put out a one-sided post. Those who are familiar with the ongoing issue and seeing you share it freely over time are likely to feel welcome to mention a possible help they may know of.

 

As I've said before, I have very rarely seen the obnoxious type of posts that people are complaining of here. I had one person that I can recall e-diagnose me or my kid with a yeast infection, but that is a rare case as far as I've seen. I also don't see the "God is angry at you" stuff on here. If it does appear on rare occasion, you have to expect that on a very diverse and open forum. It's their problem, not yours. Giving all the boardies a lesson in forum etiquette because of the rare Orange Guy seems a bit overboard to me. As for comments such as "vitamin D worked for me in a similar situation," we might as well shut down the forums if people aren't allowed to share to that extent.

 

 

On the bold: nice. :bored: Alleged? Giving a lesson?

 

I'm not just talking about my story. I know you tend to be contrarian in response to my posts. That's fine. But if you look, there are other posters in this thread who have medical challenges as a part of their lives who understand where I am coming from on this issue.

 

A year or so ago, a dear friend posted on Facebook an update about her Diabetic son (Diabetes 1) and a random Facebook "friend" posted an alterntive link to a raw foods diet with the caption "diabetes can be cured!". :cursing:

 

To be fair, I have never gotten the "God" responses here or in PM.

[Halftime Hope]

Luke died last night. :(

 

That's so sad and so sudden! Poor family...God bless and comfort them.

[Catwoman]

Luke died last night. :(

 

 

:crying: :crying: :crying:

 

It happened so fast -- I thought he had at least a few more weeks. :(

 

Praying for the family.

[goldberry]

 

. It feels like judgmentalism..."You haven't tried hard enough to heal your loved one." If you haven't been there, then it might be difficult to imagine, but trust me it gets so.hard.to.take - it's why some of us shut down. After about 15 PM's, and I've NEVER shared in any depth concerning ds's heart issue, indicating we were lousy Christians and this is why it was happening to him, I thought to myself "NEVER AGAIN!"

 

Faith

 

Good lord, I had no idea that went on in PMs. :sad: I'm surprised people would even stay on the forum after that. That's HORRIBLE.

 

I can also see why people might be a justifiably sensitive after an experience like that.

[goldberry]

 

Don't get me wrong, I don't think it's a fad diet for people who actually have a medical condition that requires them to go GF. But I get so sick of people screeching that gluten is bad for everyone and going GF will magically cure your ADD/joint pain/hair loss/ear infection/UTI/and on and on ad nauseum. People who have preschoolers who act like preschoolers think that taking their kid off gluten will make them magically able to sit at a table and do written work for hours on end. And I don't know how many times I've heard a parent freaking out because their kid has been a monster all day and the parent says, "Oh, someone must have given him something with gluten in it!" Yeah, or maybe your kid is just overtired. Or having a bad day. You can't even have a conversation about parenting now because inevitably someone will say, "Oh, you just need to go GF!"

 

I'll stop there... I think everyone gets the idea. :p

 

Thanks for clarifying. :001_smile: I agree with what you are saying.

[Callie]

 

You know, I gotta admit that I do feel better when I avoid grains, or eat gluten free stuff. This has become a realization in the last few years.

 

Who knew? If no one ever told me, I never would have paid attention.

 

Me too!

 

I've learned about some very interesting diet and other things in this and other forums. I don't want that to stop.

 

I think it's best to assume the best of everyone, and take in the wheat and spit out the chaff (after actual consideration as to whether it truly is chaff or not.).

 

I agree.

[Crimson Wife]

I'm not sure it is a cure-all wonder diet either.

 

It isn't a cure-all by a long shot, but nether is it "kooky", "extreme", "just a fad", or particularly difficult to follow once the individual gets through the initial learning curve stage.

[gardenmom5]

Dh and I have been there before. I can honestly say that it was such a dark time because IRL only one, single human being got that. My sister - the psychologist/social worker. She was the only one who could accept this was it...his dad was going to die of cancer and it was a train we could not get off and he was going to die horribly, by inches. She was the only person we could lean on. Thank God for her! Everyone else just kept telling us we weren't trying hard enough, doing enough, pouring enough this, that, and the other thing into him and making his mother desolve into a quivering mass. I began to hate people in general for a time.

 

I had that at the end with my mom. She was on full life-support with NO chance of recovery. (some of the medical staff was honest, and I did my research that gave exactly ONE case that had survived what was then going on with her. that preson was *profoundly* brain damaged. Plus, My nephew is in emergency medicine and he recognized what was going on)

 

my sister was in complete denial. "she was in good health". uh, what part of failing kidney's, carotid artory blockage, TIA's, COPD etc . etc. etc. that she was dealing with BEFORE this latest do you call "good health"?

I wanted to kick the dr in the rear becasue he wouldln't come out and say "she has no chance of recovery". He was feeding into my sister's fantasies that she *would* (not 'could', not 'might" WOULD) recover. I felt like he was only covering his rear end. maybe he thought he was letting her down easy when in reality he made it worse.

 

then she's mad because my brother and I called to say "we're removing life support, come now" and she refused. she made some claim why she couldn't drive to the hospital, and my brother even went to her house to get her - she still refused. She was surprised when mom actually, gasp, died!

 

I also think those that are afraid of death, have a hard time facing a dying loved one. (I've watched my sister enough over the years, she can. not. handle. death.)

[Joules]

I get it, Joanne. It can be so frustrating. I don't much post about my chronic issues online because of it, though the chronic illness social group is tempting. Just this morning I had this conversation IRL:

"Did you see the program [can't remember the name] on Netflix Instant?"

me:"No"

"Have you heard of the Gerson program?

me:"No"

"There was this woman that was completely cured with diet and coffee enemas. Have you tried coffee enemas?"

me: :scared:

 

So this complaint is very timely for me and I will vent with you. Though I guess I get hit most weeks so probably any time would be timely.

 

(Apologies in advance to anyone who had their life saved by the coffee thing.)

[Catwoman]

I get it, Joanne. It can be so frustrating. I don't much post about my chronic issues online because of it, though the chronic illness social group is tempting. Just this morning I had this conversation IRL:

"Did you see the program [can't remember the name] on Netflix Instant?"

me:"No"

"Have you heard of the Gerson program?

me:"No"

"There was this woman that was completely cured with diet and coffee enemas. Have you tried coffee enemas?"

me: :scared:

 

So this complaint is very timely for me and I will vent with you. Though I guess I get hit most weeks so probably any time would be timely.

 

(Apologies in advance to anyone who had their life saved by the coffee thing.)

 

I hope you followed up that :scared: with a :ack2: and a few choice :cursing:

 

Maybe she was just trying to be helpful, but it sounds like it must have been quite the awkward conversation. Perhaps you should have asked her if she does the coffee enema thing, and what flavor coffee she prefers to use for it. :glare:

[gardenmom5]

"There was this woman that was completely cured with diet and coffee enemas. Have you tried coffee enemas?"

me: :scared:

 

I would have given a more emotive response. :ack2: :eek: :auto:

[PeterPan]

.