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Thread: my friend the expert

  1. #21
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    Quote Originally Posted by debbie-b View Post
    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.

  2. #22
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    Quote Originally Posted by Saysusie View Post
    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.

  3. #23
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Saysusie View Post
    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!

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    Quote Originally Posted by Saysusie View Post
    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!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by Saysusie View Post
    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.

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    Quote Originally Posted by KCat View Post
    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!

  8. #27
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by KCat View Post
    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

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    Quote Originally Posted by rob View Post
    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

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    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?

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    Quote Originally Posted by lupyme View Post
    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.

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