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ruziska
07-27-2011, 07:43 AM
I have a good friend, love her dearly and bless her heart she unknowingly can be such a source of amusement. Yesterday was no exception.

She has a friend who has lupus and she herself may have Rheumatoid Arthritis (hasn't seen the rheumy yet). She is also well educated. Book smart that is. In her chosen college major of accounting. She and I haven't talked much this summer so yesterday was a catch up day and one of the topics was my lupus. Specifically Vitamin D. I'm on 5000 i.u's a day and was given specific orders by the rheumy to stay OUT of the sun, keep covered, wear sunscreen... you all know the drill. Well, my darling college edumacated (sp on purpose) disagrees with the rheumy who has been a rheumy for many, many years. According to her I need at least 20 minutes of direct sunlight on my skin each day. Of course I do! If I want to feel like I've been run over by a train, if I want that nuclear red glow, if I want to itch like I've rolled around in poison ivy, if I want a nasty headache then by all means, get my tan on!! Except I don't tan, I fry. She absolutely refused to try and understand. I explained to her that I had to replace the fluorescent light by my chair with a halogen bulb as the fluorescent made my face turn beet red. That being under the lights of certain chain stores made my skin turn red and my joints ache. She said the achy joints were from walking around the store. I told her my daughter was pushing me around in their courtesy wheelchairs, so yeah, there goes her argument. She went on about her friend this and her friend that and how her friend was dealing with lupus. I told her that her friend was lucky that she had lupus, lupus didn't have her and that each case is different.

I told her about you all and the wealth of knowledge on this site. She asked me "what do THEY know?!" I told her that while she was surfing the internet about lupus, "they" were out living it and that each in every one of them has a Ph.D in living with lupus.

Again, love her dearly, but some days we talk about the weather...

tgal
07-27-2011, 08:18 AM
LOL I loved the post because I think we all know someone like that however, "Bless her heart" made me chuckle and I will show you why. There are many southern phrases that are like that one and Jon Reep hits the nail on the head. I hope you take this in the spirit that it is given because I say those things too! It just made me think of this and we all need a laugh


http://www.youtube.com/watch?v=GOEkbt2ZINE

BonusMom
07-27-2011, 08:22 AM
I HAD one of those friends. She thought I'd be cured if I would just drink the juice supplement she was selling. I haven't seen her in nearly a year. We work in the same bldg and have known each other 24 years.

Then again, she also takes her 11 year to a salon for highlights and then complains she is broke. Seriously, what are you teaching your daughter by getting highlights at eleven?????? I digress.

Anyway, I completely understand what you're sayin' and those "friends" will never get it.

Manderson
07-27-2011, 09:20 AM
Everyone's an expert lol! TGal - yep "bless his/her heart" covers it all. I love to use that saying when all else stumps me.

ritzbit
07-27-2011, 09:27 AM
I have a dad who seems to think I'd be a lot better if I would just take iron supplements and exercise more. Though my doctor has never once said anything to me about needing more iron, my dad pushes that often. And once said that my mom probably didnt feed me right (I have lived with her my whole life). He tried to show my doctor my feet when I had vasculitis, like he was trying to explain to her what was wrong. He is a very smart man, who SHOULD have been more than he is but life happens you know? But just because life happens and you didnt become a doctor doesnt mean you get to walk around and act like one....Sorry about your friend. People drive me crazy when they think they know it all.

And tgal, that video had me cracking up! SO TRUE lol

rob
07-27-2011, 10:10 AM
Everybody knows an expert it seems.

Just a little background info on me-

I have multiple college degrees as well as an extensive background in mechanical engineering. I am an expert in a couple of specific technical fields. I also have been living with SLE since 2004, and I have the experience of growing up with a parent who has SLE. That would be the amazing lady known as my Mom. I've even been a moderator at a really cool Lupus website that we've all come to know and love, for a couple of years now. I know quite a bit about Lupus.

Am I a "Lupus Expert"?

Heck no I'm not!

I have a good working practical knowledge of the disease, and I know about some of the more technical aspects of autoimmune disorders, but I am far from an expert. I have known many people with far less education and practical experience than me who thought they were "Lupus Experts". I'm not, and neither were they.

I've had to explain my philosophy on "Experts" to all of them. Many of them, to their credit, backed away from their pseudo-expert stance after hearing my rant. Some others though, will never admit to their huge gaps in knowledge on the subject, and they are the ones I just simply tune out. I put them on my "mental ignore list", if you will.

Competent and experienced Rheumatologists, Neurologists, Opthamologists, Immunologists, and all the other relevant specialists, are the real Lupus experts.

I'll get off of the soapbox now...



BTW-Great thread you guys!

"He beats puppies with kittens..." LOL!

mdawncooper
07-27-2011, 10:32 AM
This post made me laugh and remember. My daugher has dealt with Chronic Daily Migraines for 4 years and you can only imagine all the "advice" I have gotten over these years.

Melanie

steve.b
07-27-2011, 06:52 PM
an expert -

an ex is a has been
a spurt is a drip under pressure

tgal
07-27-2011, 07:03 PM
an expert -

an ex is a has been
a spurt is a drip under pressure

LOLOL That really did make me laugh out loud!

rob
07-27-2011, 07:08 PM
an expert -

an ex is a has been
a spurt is a drip under pressure

Good one Steve!

KCat
07-28-2011, 04:06 PM
Oh Lawd! If I had a dime for all the well-meaning advice I've gotten. How many of you have gotten the "Aspartame causes Lupus" email from a family member or friend? My husband drinks the stuff by the gallon (Diet Coke is his addiction of choice) and no Lupus, no MS, none of that stuff. Me, can't stand the stuff.

Like Ruziska, just a few minutes of sun and my skin is bright red and and swelling. I'm better now but I used to go down with fever and joint pain from it. Yes, healthy people should get 10-20 minutes a day. But not most of us. We have to make do with what we get under our hats and sunblock and take our calcium and vitamin D through our diet. :(

I had a coworker who believed all ills were caused by allergies. She said I got sick when I came to work because the mold spore levels in town were higher than out in the burbs. I learned later that it was the UV lighting in the labs. I'm sure the mold didn't help but it wasn't the cause. (besides, I lived out near the rice fields - can you say "mold heaven"?) Also, my joint pain was a dairy allergy according to her. uh. yeah. So I gave up dairy. I'm still in pain.

Whatever. Sometimes you just have to smile at them and nod politely. You can't argue with these experts. You know your body and what it reacts to. Even another lupie can only relate what they have experienced and it may not match up with what you experience.

lovedbyHim
07-28-2011, 04:43 PM
Oh Lawd! If I had a dime for all the well-meaning advice I've gotten. How many of you have gotten the "Aspartame causes Lupus" email from a family member or friend? My husband drinks the stuff by the gallon (Diet Coke is his addiction of choice) and no Lupus, no MS, none of that stuff. Me, can't stand the stuff.

Like Ruziska, just a few minutes of sun and my skin is bright red and and swelling. I'm better now but I used to go down with fever and joint pain from it. Yes, healthy people should get 10-20 minutes a day. But not most of us. We have to make do with what we get under our hats and sunblock and take our calcium and vitamin D through our diet. :(

I had a coworker who believed all ills were caused by allergies. She said I got sick when I came to work because the mold spore levels in town were higher than out in the burbs. I learned later that it was the UV lighting in the labs. I'm sure the mold didn't help but it wasn't the cause. (besides, I lived out near the rice fields - can you say "mold heaven"?) Also, my joint pain was a dairy allergy according to her. uh. yeah. So I gave up dairy. I'm still in pain.

Whatever. Sometimes you just have to smile at them and nod politely. You can't argue with these experts. You know your body and what it reacts to. Even another lupiwe can only relate what they have experienced and it may not match up with what you experience.

I know a woman who is convinced I have lyme disease even though I told her I was tested twice and it came back negative.

lacey50
07-29-2011, 02:04 PM
There are so many people out there "that know it all", but really all they know is "Nothing" Great thread!!!!

rob
07-29-2011, 02:07 PM
I know a woman who is convinced I have lyme disease even though I told her I was tested twice and it came back negative.

Just tell her there's no way since you gave up eating key lime pie. And tell her that you also use Lime-A-Way when removing the hard water stains in your tub, so there's just no way you can have it.

I'm sure she'll understand.

debbie-b
07-29-2011, 02:37 PM
The last thing, I have heard, from a "friend", " this disease can't be as bad as you say, you look so healthy".
Yeah, I know, I take 10 pills a day and give myself a weekly shot, just for the heck of it.
People like that really get on my nerv.
My joints are ruined and hurt, my muscles hurt, I have headaches, stomach problems, skin problems, I am so dizzy at times that I can't walk( or better, I CAN walk, right into the wall or door), my fingers are starting to cripple, BUT I LOOK GOOD. Well I guess, that is a good thing, I could look really bad. I am so glad that my friend thinks it's nothing serious.

Debbie

Linda From Australia
07-30-2011, 12:22 AM
The last thing, I have heard, from a "friend", " this disease can't be as bad as you say, you look so healthy".

Say to your "friend" That is my intention to always look good so people don't know how I am really feeling. Thank you for complimenting me.

Nonna
07-31-2011, 02:59 PM
an expert -

an ex is a has been
a spurt is a drip under pressure


This is the best- I love it

Saysusie
07-31-2011, 11:41 PM
I had lunch with an old friend last week. I had to crawl out of bed to keep this lunch date because I had not seen her in such a long time. I literally felt like S@#t, but I made an effort to put on a bit of makeup, comb my hair, get dressed, drive to the restaurant to meet her. She has known about my diseases and also knew that I have been having a very hard time for the past 4 months. So, I arrive at the restaurant, moving at a snails pace, and I see her watching me as I make my way to the table. Her first comment was, "I thought you said you had been sick. You trying to get attention or sympathy cuz nobody that beautiful can be as sick as you claim to be!"
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head??? She then proceeded to tell me that Fibromyalgia was not a real disease, it was something invented by doctors to lump curious ailments in when they had no answers...that I could not have Lupus because I don't have any manifestations on my skin and that, if I exercised vigorously and drank copious amounts of water, and de-toxed every month..I could "Cure" whatever disease I claimed to have.
Needles to say, I refused to respond to any of her "expert" opinions, finished the meal making polite conversation, and after eating my meal, I politely excused myself stating that I was going to the ladies room. I walked out of the restaurant, got into my car and drove home.
I had three phone calls from her when I arrived home..I haven't listened to the messages (nor am I going to) and have not returned her phone calls. I certainly hope that she figures out what I am saying to her (by not saying it), and perhaps she will remember this incident and my reaction, if she ever decides to tell someone else, who is living with an illness, that she knows more about it than they do.

I agree with Steve's definition of "ex spurt" wholeheartedly :-)

Peace and Blessings
Namaste
Saysusie

steve.b
08-01-2011, 02:09 AM
good on you susie for standing (walking) your ground.

sometimes we try so hard to be polite, when we need to be true instead.

lovedbyHim
08-01-2011, 03:34 AM
Just tell her there's no way since you gave up eating key lime pie. And tell her that you also use Lime-A-Way when removing the hard water stains in your tub, so there's just no way you can have it.

I'm sure she'll understand.

Great reply!

lovedbyHim
08-01-2011, 03:40 AM
The last thing, I have heard, from a "friend", " this disease can't be as bad as you say, you look so healthy".
Yeah, I know, I take 10 pills a day and give myself a weekly shot, just for the heck of it.
People like that really get on my nerv.
My joints are ruined and hurt, my muscles hurt, I have headaches, stomach problems, skin problems, I am so dizzy at times that I can't walk( or better, I CAN walk, right into the wall or door), my fingers are starting to cripple, BUT I LOOK GOOD. Well I guess, that is a good thing, I could look really bad. I am so glad that my friend thinks it's nothing serious.

Debbie

Debbie there is a humorous site for people with lupus. They make T shirts, mugs, etc. One of the quotes is, "Lupus must be good for me, everyone says, "But you look so good!" You just have to purchase one of the T shirts and take your friend to lunch wearing it.

lovedbyHim
08-01-2011, 03:50 AM
I had lunch with an old friend last week. I had to crawl out of bed to keep this lunch date because I had not seen her in such a long time. I literally felt like S@#t, but I made an effort to put on a bit of makeup, comb my hair, get dressed, drive to the restaurant to meet her. She has known about my diseases and also knew that I have been having a very hard time for the past 4 months. So, I arrive at the restaurant, moving at a snails pace, and I see her watching me as I make my way to the table. Her first comment was, "I thought you said you had been sick. You trying to get attention or sympathy cuz nobody that beautiful can be as sick as you claim to be!"
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head??? She then proceeded to tell me that Fibromyalgia was not a real disease, it was something invented by doctors to lump curious ailments in when they had no answers...that I could not have Lupus because I don't have any manifestations on my skin and that, if I exercised vigorously and drank copious amounts of water, and de-toxed every month..I could "Cure" whatever disease I claimed to have.
Needles to say, I refused to respond to any of her "expert" opinions, finished the meal making polite conversation, and after eating my meal, I politely excused myself stating that I was going to the ladies room. I walked out of the restaurant, got into my car and drove home.
I had three phone calls from her when I arrived home..I haven't listened to the messages (nor am I going to) and have not returned her phone calls. I certainly hope that she figures out what I am saying to her (by not saying it), and perhaps she will remember this incident and my reaction, if she ever decides to tell someone else, who is living with an illness, that she knows more about it than they do.

I agree with Steve's definition of "ex spurt" wholeheartedly :-)

Peace and Blessings
Namaste
Saysusie

I had a boss like this and now she is sick in all kinds of ways and they can't identify it. She repeatedly goes to doctors and they say they can't find anything. I always think of the verse, "Do unto others as you would have them do unto you." She now shows mercy to me when I am sick. Some people have to learn the hard way. I am so grateful that I am surrounded by people who remember me when I was well and truly see what a fight I have to keep going. They love me more for it & never negate my suffering.

rob
08-01-2011, 05:18 AM
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head???

If a full blown war ever breaks out between the Wannabe Experts and the Lupies, I want you in my foxhole!

tgal
08-01-2011, 06:56 AM
I had lunch with an old friend last week. I had to crawl out of bed to keep this lunch date because I had not seen her in such a long time. I literally felt like S@#t, but I made an effort to put on a bit of makeup, comb my hair, get dressed, drive to the restaurant to meet her. She has known about my diseases and also knew that I have been having a very hard time for the past 4 months. So, I arrive at the restaurant, moving at a snails pace, and I see her watching me as I make my way to the table. Her first comment was, "I thought you said you had been sick. You trying to get attention or sympathy cuz nobody that beautiful can be as sick as you claim to be!"
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head??? She then proceeded to tell me that Fibromyalgia was not a real disease, it was something invented by doctors to lump curious ailments in when they had no answers...that I could not have Lupus because I don't have any manifestations on my skin and that, if I exercised vigorously and drank copious amounts of water, and de-toxed every month..I could "Cure" whatever disease I claimed to have.
Needles to say, I refused to respond to any of her "expert" opinions, finished the meal making polite conversation, and after eating my meal, I politely excused myself stating that I was going to the ladies room. I walked out of the restaurant, got into my car and drove home.
I had three phone calls from her when I arrived home..I haven't listened to the messages (nor am I going to) and have not returned her phone calls. I certainly hope that she figures out what I am saying to her (by not saying it), and perhaps she will remember this incident and my reaction, if she ever decides to tell someone else, who is living with an illness, that she knows more about it than they do.

I agree with Steve's definition of "ex spurt" wholeheartedly :-)

Peace and Blessings
Namaste
Saysusie

Perfectly done!

KCat
08-01-2011, 06:17 PM
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head??? She then proceeded to tell me that Fibromyalgia was not a real disease, it was something invented by doctors to lump curious ailments in when they had no answers...that I could not have Lupus because I don't have any manifestations on my skin and that, if I exercised vigorously and drank copious amounts of water, and de-toxed every month..I could "Cure" whatever disease I claimed to have.
Namaste
Saysusie

Wow! I don't know how you managed to keep your cool. I would have been a total wimp, though, I admit. Oh, I would have explained about how Fibromyalgia has research supporting it and that it is, at the very least, a sensitivity to the neurotransmitter Substance P. I then would have followed that with the fact that the fact that Lupus and Fibro have about a 70% overlap rate. That is, some 70% of lupus patients have Fibro. (I may be mistating that, it may be higher). And so on. I'd have hit her with all the biology of both diseases and whatever of the requisite symptoms that are used to diagnose Lupus that I have. But then I'd have shut up and been grumpy the rest of the lunch knowing that she wasn't buying it and probably would have had to listen to more "expert" opinions. And all that would have stressed me to the max. I like your method much better. Just leave. I've heard "But you don't look sick." And I've even heard that other stuff to an extent. But never so full-force as that. And no one I know has ever even heard of Fibro enough to tell me it isn't real!

I did have a Med student tell me that it is a "catch all" for when docs don't know what they're really dealing with - but he was saying it in a positive way. He was saying "stick with it until you know what's going on because the Fibro is just the outward symptom of something larger." He wasn't saying it wasn't real. It seems to be a condition that is very common with many autoimmune diseases - an early manifestation if you will. But that means we go a long time with pain and no answers.

I have a friend whose doctor actually told her should couldn't have Lupus BECAUSE she had Fibro! I sent her a ton of literature explaining that the two were very intimately linked and that her doctor was full of it. Pretty sure she ignored me and went with his bull. That saddened me. Not that I want her to be sick but that it says to me her doc is not likely to pay attention if her condition worsens but just keep calling it "Fibro" only because she can't possibly have Lupus. grr.. I hope not. I hope she doesn't worsen and I hope he will have the sense to retest her if it does.

lovedbyHim
08-01-2011, 08:31 PM
Wow! I don't know how you managed to keep your cool. I would have been a total wimp, though, I admit. Oh, I would have explained about how Fibromyalgia has research supporting it and that it is, at the very least, a sensitivity to the neurotransmitter Substance P. I then would have followed that with the fact that the fact that Lupus and Fibro have about a 70% overlap rate. That is, some 70% of lupus patients have Fibro. (I may be mistating that, it may be higher). And so on. I'd have hit her with all the biology of both diseases and whatever of the requisite symptoms that are used to diagnose Lupus that I have. But then I'd have shut up and been grumpy the rest of the lunch knowing that she wasn't buying it and probably would have had to listen to more "expert" opinions. And all that would have stressed me to the max. I like your method much better. Just leave. I've heard "But you don't look sick." And I've even heard that other stuff to an extent. But never so full-force as that. And no one I know has ever even heard of Fibro enough to tell me it isn't real!

I did have a Med student tell me that it is a "catch all" for when docs don't know what they're really dealing with - but he was saying it in a positive way. He was saying "stick with it until you know what's going on because the Fibro is just the outward symptom of something larger." He wasn't saying it wasn't real. It seems to be a condition that is very common with many autoimmune diseases - an early manifestation if you will. But that means we go a long time with pain and no answers.

I have a friend whose doctor actually told her should couldn't have Lupus BECAUSE she had Fibro! I sent her a ton of literature explaining that the two were very intimately linked and that her doctor was full of it. Pretty sure she ignored me and went with his bull. That saddened me. Not that I want her to be sick but that it says to me her doc is not likely to pay attention if her condition worsens but just keep calling it "Fibro" only because she can't possibly have Lupus. grr.. I hope not. I hope she doesn't worsen and I hope he will have the sense to retest her if it does.

I had a doc say it was fibro and probably not lupus and want to slowly take me.off prednisone. I was out of there fast. My new rheumy's advices me to stay on a low dose of prednisone because I am more stable. She diagnosed me with both fibro and SLE. I guess we are always going to meet wackos!

rob
08-02-2011, 05:43 AM
I have a friend whose doctor actually told her should couldn't have Lupus BECAUSE she had Fibro! I sent her a ton of literature explaining that the two were very intimately linked and that her doctor was full of it. Pretty sure she ignored me and went with his bull. That saddened me. Not that I want her to be sick but that it says to me her doc is not likely to pay attention if her condition worsens but just keep calling it "Fibro" only because she can't possibly have Lupus. grr.. I hope not. I hope she doesn't worsen and I hope he will have the sense to retest her if it does.

I once had a Doctor tell me that it's impossible to have both SLE and MS. The ignorance of some "healthcare professionals" when it comes to even the most basic facts regarding autoimmune disorders is really staggering.

Rob

KCat
08-03-2011, 08:02 AM
I once had a Doctor tell me that it's impossible to have both SLE and MS. The ignorance of some "healthcare professionals" when it comes to even the most basic facts regarding autoimmune disorders is really staggering.

Rob

Oh fercryinoutloud! This is very frustrating. Not that I want anyone to have one of these overlap dx's. But really. A rheumatologist should know this stuff. An internist should know. I saw an internist once out of desperation and she said my mother's and sister's conditions had nothing to do with mine. Never saw her again. If you don't know basic genetic predisposition you don't belong in medicine. She retired a year later. :P

lupyme
08-04-2011, 12:14 PM
Yep, there's no shortage of lousy advisers. I got the aspartame email and "My__________ had that and took____and it went away." and "This all natural juice will relieve all your pain." and "It's all in your head." and my favorite "If you stop taking all those pills, you'd get better." That's not the entire list, but then again I'm not telling ya'll anything you haven't heard. What's your favorite line?

KCat
08-04-2011, 01:24 PM
Yep, there's no shortage of lousy advisers. I got the aspartame email and "My__________ had that and took____and it went away." and "This all natural juice will relieve all your pain." and "It's all in your head." and my favorite "If you stop taking all those pills, you'd get better." That's not the entire list, but then again I'm not telling ya'll anything you haven't heard. What's your favorite line?

While my husband is wonderful and supportive now, when I first started having problems and we didn't know what was wrong he came home one evening and told me about the wife of a friend of his. This wonderful woman, who truly was someone to be admired, had cancer. But what he said was still a kick in the gut. "She has cancer and she never complains."

Well, guess he told me, eh?

He would never do that now but back then he just had no clue what was happening and how bad the pain was or if it was even real or in my head. To him it was just like a bad headache or sore muscles from a workout. He has since had some tough days of his own and had occasion to ask me, "Is this how you feel all the time?" Yup. Welcome to my world. Those experiences were eye opening for him.

We did set up a pain scale based on that. I would no longer "complain" but would just give him a pain scale. It eliminated a lot of the emotion from the situation but still allowed me to communicate my needs. He has no recollection of saying that and when I talked to him about it some weeks later (having finally gotten over the hurt) he was *sure* he didn't mean it that way anyway. That it was pure coincidence.

KCat.