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pandagirl
01-03-2010, 09:46 AM
Quote of the week from an aquaintance...."so Andrea, how are you feeling..is the Lupus gone"...reply in my head...."no you dumb ***k".... I actually replied.". No, it's like Herpes..it never goes away !!!!" uugggghhh..so frustrating.

ritzbit
01-03-2010, 09:53 AM
I know what you mean. My friend said very loudly once in class that my lupus was like AIDS. Now Im pretty sure quite a few people in my US History class think I have AIDS.

MicRoMediC
01-03-2010, 09:56 AM
Okay not funny but I laughed my a** off! HAHAHA. Thanks for the post.

BonusMom
01-03-2010, 10:01 AM
As Ron White says "You can't fix stupid."

People just don't "get" invisible illness. If you had your leg amputated, they wouldnt be so thoughtless as to ask if you were going to get your leg back. I'm only a year in to this and I"m already tired of "educating" people. I feel your frustration!

rob
01-03-2010, 10:19 AM
Quote of the week from an aquaintance...."so Andrea, how are you feeling..is the Lupus gone"...reply in my head...."no you dumb ***k".... I actually replied.". No, it's like Herpes..it never goes away !!!!" uugggghhh..so frustrating.

The last time someone said something like that to me, I turned around and asked them if their mother had any children who lived...

It's funny how other's propensity for putting their foot in their mouth, brings on a primal urge in me to place my foot, boot and all, in their ass. Forcefully, if necessary.

Rob (size 11 1/2 wide)

BonusMom
01-03-2010, 10:34 AM
LOL! Thanks for the laugh this morning!

rob
01-03-2010, 11:45 AM
Is Ron White the "Tater Salad" guy?

BonusMom
01-03-2010, 12:01 PM
Is Ron White the "Tater Salad" guy?

The one and only!

Saysusie
01-03-2010, 01:24 PM
OK Rob...I really like that one and I think I'm going to remember it so that I can use it myself!!

I can't tell you how many times I have heard people, publicly, describe my Lupus as being the same as AIDs..I simply reply that Lupus is not acquired, therefore we do not catch it nor do we spread it... Also, Lupus is not an immune deficiency...it is an auto-immune disease. I then suggest that, before they try to make any further explanations about my disease, that they consult with me or a medical journal first! Most of the time, they still have no clue what I've just said, but it usually leaves them speechless nonetheless.

:skeptical:

Peace and Blessings
Namaste
Saysusie

pandagirl
01-03-2010, 02:03 PM
Thanks to all of you for the input/laughs..for only you understand!!!
Rob...I love that one...
Ritz... the AIDS thing blows my mind...youth and misinformation at it's best
Saysuzie,.... the next time I can't fully explain..I am sending them your way.lol!!!

tiggerlishus - Heidi
01-03-2010, 03:08 PM
omg i love this thread in a wierd equal fustration and laugh at stupidity if you know what i mean!! i've been diagnosed seven years i have the aids shout out, the is gone question and so much more including one man chatting me up and when i told him about the lupus he asked how easily can i catch it????? hmmmm not at all i said!!! duhhh just think if pepole haven't got the confidence to ask you about it them selves there is such a thing as google!!!
have to say lvoing everyones replys!!!
and ps rob oh what big feet you have ;-) lol x
and saysuzie how i wish i had your articulatatecy ( even if that is a word!! hope oyu know what i mean! lol!) my prob is that i always think of the best replies about 10 mins after when the moments gone or even 12 hours later when you not even near them anymore!! lol

kim,l
01-03-2010, 06:04 PM
yes i know what you all mean i have had people say to me oh i have some of those symptoms maybe you gave it to me should i get tested. or all you need is some antibiotics and that will fix you ,or lose some weight and it will be gone. or go and have holiday you will feel better are they dumb or just airheads do they really think if it was that easy we all would have done it already sometimes i think some people have there brains in there butts and are so squished from sitting on them.

scubagramplit
01-03-2010, 06:56 PM
As Ron White says "You can't fix stupid."

People just don't "get" invisible illness. If you had your leg amputated, they wouldnt be so thoughtless as to ask if you were going to get your leg back. I'm only a year in to this and I"m already tired of "educating" people. I feel your frustration!

Isn't Ron White funny? He is great to whatch

scubagramplit
01-03-2010, 07:11 PM
I definetly understand every body's frustration with the uneducated however lets be honest with ourselves, How many people out there knew any thing about lupus before we got it? I for one darn sure didn't. Granted that some of the questions are a bit far off however I try to take the approach that it is my job to edjucate them, I wish I could say I am always possitive however we do all get frustrated but I do not take it out on them. I have not yet had any body ask me questions in a demeaning way, they just don't know. The doctors that we pay to try to help us that do not understand, now that is another story. God bless, Jim

puzzled
01-03-2010, 08:06 PM
Jim, i agree totally. The doctors are definitely another story. As for other people I don't talk much about being unwell so most people don't comment on it. Although alot of people are questioning my sudden weight loss in a curious way. I can understand why you are frustrated Andrea as the comment on the surface seems thoughtless and dumb, but hopefully she really is concerned about how you are going.

rob
01-03-2010, 08:39 PM
I definetly understand every body's frustration with the uneducated however lets be honest with ourselves, How many people out there knew any thing about lupus before we got it? I for one darn sure didn't. Granted that some of the questions are a bit far off however I try to take the approach that it is my job to edjucate them, I wish I could say I am always possitive however we do all get frustrated but I do not take it out on them. I have not yet had any body ask me questions in a demeaning way, they just don't know. The doctors that we pay to try to help us that do not understand, now that is another story. God bless, Jim

Jim,

You know, that is a really good point. Before I was diagnosed with SLE, I did know about Lupus after my mother was diagnosed with it. But before that, I had never even heard of Lupus. I suppose it's wrong to be angry towards people who know nothing about Lupus, because I was one of them. I'm probably guilty of sometimes lumping those who honestly don't know, in with those who knowingly make demeaning comments about it. Looking back, the people who simply didn't know far out numbered those who made remarks out of spite.

Your comments made me think, thank you for that,

Rob

BonusMom
01-03-2010, 09:02 PM
Great point, Jim, about most people being ignorant about SLE. It's easy to see why......research monies aren't necessarily funneled toward a disease that doesn't have the the mortality rates as cancer, AIDS, etc. In the chronic illness pie of life, I'm sure SLE is but a very small piece. The fewer amount of dollars towards research, it seems that the less awareness there is.

My employer does several walk-a-thons- for various health related conditions throughout the year. I suggested one to support Lupus/Lupus Foundation of America and didn't even get the courtesy of a response to my email, which is pathetic.

I was going through some old work documents (circa 1995) a couple of weeks ago and came across some research for a lawsuit wherein the plaintiff was claiming that an error by the pharmacy (our client and defendant in the suit), caused him horrible distress. The plaintiff had Lupus and Lupus Nephritis, which were significantly impacted by the pharmacy's mistake in dispensing his meds. The case settled and two months later, I read his obit in the paper :(

Never, in my wildest dreams did I ever think I'd be diagnosed with SLE, but let me tell you, after that particular case, I thought SLE was a death sentence. I knew it couldn't be "caught", but assumed that everyone with Lupus developed Lupus Nephritis. It was only after doing a lot of (current) research on the internet that I realized SLE doesn't have to be a death sentence.

There are so many chronic illnesses/conditions out there that I have no knowledge of and this thread is a great reminder to be patient with people who seem to be ignorant about SLE and to take the time to educate them or simply ignore them.

By the way, Jim, one of the documents that I had retained was by Dr. Kenneth Wiesner, the rheumy in Sacramento that I told you about.

kim,l
01-03-2010, 09:35 PM
i was just wondering do they have information packs in america that could be handed out to family and friends we have nothing here i was just diagnosed and handed no information the only information i got was from this website when i looked my self i really think if people are going to understand our illness and what we have to put up with then they need information in hind sight they probably do not understand unless fully explained i also think gp should also have this information i was just lucky that after so many doctors and no diagnoses other than i was crazy she looked at my symptoms and ordered tests. i donot think autoimmune diseases get as much coverage as other diseases i think there needs to me more information readily available what do you all think. hugs kim l

tiggerlishus - Heidi
01-03-2010, 11:38 PM
i have to say i agree with jim and everyone about being one of them who didn't know about lupus till i was diagnosed!! and that i let my fustration of people ignorance get the better of me but i do think with the technology we have these days if people are that concerned or interested it doesn't take few mins to google but i do give credit where credits due there's been alot of awareness clipits you can share on facebook and since sharing them i have had more friends say thank you for educating them!! and have then to continue to share the info with thier friends!!

as far as info packs here in uk when i was first diagnosed i got couple of leafets when i was first diagnosed but thats it nothing to pass on to friends and family but maybe its an idea to mention it to your local lupus charity??

magistramarla
01-04-2010, 09:47 PM
I'm one of the rare people who knew a lot about Lupus long before my own dx. About 25 years ago, my best friend's sister was dx'd with it. Jeff and I helped Marty to research the disease so that she could help Lena. Lena managed to have a beautiful little daughter despite the docs telling her that she couldn't have children. Unfortunately, she lost her battle and passed away a couple of years ago. Her sister, my beloved Marty, has degenerative disc disease and a lot of other health problems that make me wonder if she has AI issues, too. It was quite a shock for me to hear Lupus mentioned about my own symptoms, since I've known someone with it for so many years.
Since I use a cane and limp very badly, I'm often asked about it. Usually, I just mention the RA, since most people are at least somewhat aware of that.
Marla

scubagramplit
01-05-2010, 06:53 AM
i was just wondering do they have information packs in america that could be handed out to family and friends we have nothing here i was just diagnosed and handed no information the only information i got was from this website when i looked my self i really think if people are going to understand our illness and what we have to put up with then they need information in hind sight they probably do not understand unless fully explained i also think gp should also have this information i was just lucky that after so many doctors and no diagnoses other than i was crazy she looked at my symptoms and ordered tests. i donot think autoimmune diseases get as much coverage as other diseases i think there needs to me more information readily available what do you all think. hugs kim l

I believe that the Lupus Foundation of America has that info. When I e-mailed them they sent me a whole information packed, I would check with them.

abbasgirl
01-05-2010, 12:22 PM
This is a great thread you started Andrea. Hope you are doing well.

Sometimes you gotta laugh at people....sometimes they just don't know...and sometimes some people do need Rob's boot up their ass.

DrinkofWtr
01-07-2010, 06:36 PM
Unfortunately, people are just not educated about lupus. AIDS gets so much more publicity, than lupus. Very high profile people are educating and making people aware of AIDS, like Elizabeth Taylor does or did. Lupus doesn't get that kind of publicity or the funding poured into it as AIDS does, and other diseases, like cancer do.

BadFlareDay
01-07-2010, 09:05 PM
I have a 5 yr old Grandaughter that I never get to see. Her Mom and G-Ma feel that I'm too sick to care for her. Anyway, I found out not long ago that they were telling everyone I had cancer, so I guess they really don't know what Lupus is.

I've been raising my other sons baby for the last 5 months, so far I'm dealing with him. Very thankful he is a 12 hr per night sleeper, so I do get my rest if I go to bed when he does.