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craftkeeper
04-05-2011, 03:43 PM
I tell you what folks, i have some of the strangest friends. I ran into one friend/ relative and in the course of catching up with her i told her of my Lupus Dx. She put her arm on my shoulder and said " Whew, at least it's not anything bad. I have a couple of friends who have Lupus and they've never had a problem. It's nothing to worry about really.
I said,are you sure it's Lupus they have? And she said yeah all you have to do is stay out of the sun. Lupus is such a minor thing.


I seem to be getting alot of that from friends and even family. At first it kind of hurt my feelings,because i have really been sick this last couple of months. And i dont go around telling everybody. Just a few close friends and family members. I'm one of those people that hardly ever gets sick and i have really taken care of myself. Very few people have ever heard me say i am in pain. So it's not that they are used to hearing it from me. I think i may be having myself a pity party here. I know alot of you are a lot worse off then me and i really do hate to come on here and bitch about how uncaring people are . Thank God for my husband, he cares enough to make up for all the rest.

red246
04-05-2011, 04:17 PM
Sorry to hear that you're getting that, but I completely understand! Pretty much got the same thing from my grandmother, "Well, I knew so n so who had Lupus. They were fine, they just had to take it easy every once in a while." Or even my mother! My sis in law is now sick & they think it's something autoimmune. "She's on steroids & her doctors changed her diet and have her on a strict workout program! She walks 3 miles a day!" OMGosh! I wish I could walk 1 mile a day w/out paying for it for the next week!

Sorry, going off on a tangent! Maybe you could forward them a link, or print out some info on, to the Lupus.org site, has all the info on it about what Lupus can/does do to a person. Or there is always the "Spoon Theory". I know having a caring/good hubby helps - I thank God for mine everyday - but it also helps to have other people understand. (((HUGS)))

Bonita
04-05-2011, 04:28 PM
I think alot of us get that pretty much because no one unless they have this knows what we go through because sometimes it does not show on the outside how bad you feel. This is why we are here for each other. Bonita

craftkeeper
04-05-2011, 04:51 PM
Thanks Red and Bonita. Yes it does make one feel better just to know that people care about you and i am so glad that i found this site. I may not post every day, but every morning and evening i get on here and read everyone else's posts and it helps so much.
I had to stop and think about it but you know years ago i went to school with a young man that had Lupus. I remember how he would swell and how his mother and father would take care of him at church. Back then i dont guess i gave it to much thought because as a teenager you really dont understand i guess. But i remember the day i saw his obituary in the local paper. He passed away at 48 years old. This was before all the modern advances in Medications. Now that i look back i remember how we just shrugged his sickness off and i really regret that. Odd how you will reflect on things like that in the past when we ourselves are faced with it. Thanks and Hugs to both of you.

rob
04-05-2011, 05:32 PM
I tell you what folks, i have some of the strangest friends. I ran into one friend/ relative and in the course of catching up with her i told her of my Lupus Dx. She put her arm on my shoulder and said " Whew, at least it's not anything bad. I have a couple of friends who have Lupus and they've never had a problem. It's nothing to worry about really.
I said,are you sure it's Lupus they have? And she said yeah all you have to do is stay out of the sun. Lupus is such a minor thing.

I've heard people say the same thing-that Lupus is just some minor problem. The people who have died from Lupus, would beg to differ. I come across people like your friend often. I do my best to give them the facts without getting frustrated and pissed off. I mean, the information about Lupus is only a couple of clicks away, and yet so many people are terribly misinformed, or they just don't know anything about the disease at all.

The best we can do, is to be straightforward with them and lay out the facts in a way that they can best understand. The first thing I tell people is that although Lupus is not an automatic death sentence, people do die from it. It is not a minor disease by any stretch. Some people are really cool about it, and I've even had some people I've spoken to about it come back to me and say that they decided to do some reading, and that they now have a much better understanding of the subject. And, there are others who really don't want to be bothered with any of it.

That's life. But, out of all the people I talk to about Lupus, if only a few actually follow up and learn the facts, that's a few more who are now aware of those facts, and even might pass on what they know to somebody else. Increasing Lupus awareness is a very good thing in my book. Collectively, I think it's safe to say that none of us want's to have anybody feel sorry for us, but I think we would all appreciate it if more people simply understood us.

Rob

magistramarla
04-05-2011, 10:28 PM
I agree with what Lauren and Rob said - educate 'em! Print up something to hand them or send them a link.
I put links to both the Lupus Foundation and the Sjogren's Foundation on my facebook page.
Hopefully, someone will learn from them.
Hugs,
Marla

craftkeeper
04-06-2011, 03:48 AM
Hi Rob and Marla. Yes your're both absolutly right. I will print out some info and the next time i'm faced with this i will have it handy. I really dont know anybody around me personally that has an inkling on anything about Lupus and i have to admit when i was first diagnosed, it took alot of research on my part to be able to understand it better.
I was wondering one thing that i did forget to ask in my original posts.

When first dx with Lupus were any of you given much information about it from your Doctors or did they just send you on your way? I really like my Rheumy, dont get me wrong. Even though he has done a few quirky things, for the most he's been very quick with the dx and started medicatiing me quickly. But on neither of the two visits that i have had has he volunteered any information except to give me a printout on Methotrexate and one for dealing with dry mouth and eyes. I understand that he is very busy but i was just wondering if anyone on here has a doctor that actually took the time to sit down and dicuss it with them. Just curious.

SandyR
04-06-2011, 06:49 AM
Funny because I get the opposite reaction with the people who know what's going on. When they ask why I think I have Lupus and explain they are always like but that's so bad, that disease, you don't want that. And I say no I don't *want* anything but the fact is I *have* something and I think Lupus fits the symptoms. I'm always hearing stories of a friend or relative who knows someone with it and is terribly sick and while I do have really bad times of being sick,generally I am not as sick as some people on here and more sick than others so I think I just have a milder case of it than some.

steve.b
04-06-2011, 07:12 AM
craftkeeper, i think everyone can tell you of a relative who knows EVERYTHING about how you are not really sick.

my adopted aunty has lupus, and is a nurse. my mother had her talk to me, but MOTHER KNOWS BEST.

my rheumy, is very switched on about lupus. he admits that there is no literature written for doctors to hand to patients.
he recommended several books for me to read, but cannot find anything he can "legally hand to patients" silly isn't it.

rob
04-06-2011, 08:00 AM
When first dx with Lupus were any of you given much information about it from your Doctors or did they just send you on your way?

When I was first diagnosed, the Rheumo basically said good luck, and sent me on my way. But, my longtime G.P. who originally suspected SLE and referred me to the Rheumo was very helpful. His practice was just a small office with his wife who was an RN and who also doubled as the receptionist. On my next visit to them after the diagnosis, they handed me a sort of canvas looking gift bag and in it was a copy of The Lupus Book by Dr. Daniel Wallace, and a king sized bottle of heavy duty sun-block. I thought that was really a cool thing to do. Although he wasn't a Rheumotologist, he was very well read on the subject of autoimmune disorders, and really spent the time to explain to me the possible outcomes for me, and the lifestyle changes I would have to face. Too bad there aren't more Dr.'s out there like him.

Rob

Maggi
04-06-2011, 03:04 PM
Hi There...
Honestly, people dont know what they are talking about untli they experience it. People dont know what lupus is about or what it feels like unless you have it. I never even knew what lupus was until I was diagnosed. I actually have a mild case of lupus as well. Well its not mild, but its the kind that affects my joints more then my organs so I feel like there are definitely people worse off than me. That doesnt mean that its not serious for those of us that arent affected as bad. It affects everyone differently and it is very very painful and can make you very sick no matter what kind or how bad you have it. Keep your head up. U are not having a pity party. I feel like the people around you just dont really understand what you're going through. A lot of times ill tell my friends im too tired or not feeling well to go out, and their response is "omg you are 26 years old! Why are you tired?" Its like, "because i have a disease that doesnt allow me to always have so much energy."

Any ways, hang in there. There is always someone worse off than you...Remember that. But that doesnt mean that what you're going through isnt painful and emotionally draining. :)

Feel better!

craftkeeper
04-06-2011, 03:20 PM
Rob, that was very thoughtful of your GP. He's a keeper for sure. Thanks everyone for reading my rant. I know each and every one of you have gone through the same thing. I guess it hit me really hard because i was feeling really bad when she said it.. It seems like i've been in this bad flare off and on for a month. I have no idea what is triggering it. Today my face is swollen and legs are too. My daughter said it might be the 3 week prednisone i took. I have never been able to take it before, but i stuck with it and finished my taper sunday. I took 15 mg a day the first week and 10 the next seven days. Then down to 5.. I know most all of you use prednisone when needed. would that amount make my face swollen? Anyway back on subject. I had a bad few days, a friend just passed away and was buried today after a very quick battle with Lung cancer. He was such a funny and talented person. He ran a small store and music shop close to my home and made the most beautiful handmade guitars.. Occasinally i would stop by a play one of his guitars and he would play along. He always called me cruella. Lol. Anyway the Flare and the death just has put me on edge. It's a wonder i didn't beat her when she said it.LOL Big hugs to all of you guys for letting me vent. Thanks so much

ruziska
04-10-2011, 10:15 PM
I'm betting it is safe to say that everyone on this forum has had to deal with people who don't understand but think they know everything at one time or another. Education is the key. Thick skin and selective hearing also help. When I am asked what lupus is, I tell people that my body is like a schoolyard and lupus is the bully beating up my immune system. Or that my immune system and lupus are gangs and my body is constantly stuck in a turf war. THAT the younger generation tends to understand. A young man I mentor is a former gang member and he absolutely loves that particular analogy. Yeah, Lupus is a treat alright! Gee, aren't we so lucky to have it? L-U-P-U-S it isn't even a cool sounding disease and it is named after the wolf. THE WOLF. For me personally that is ironic for here in Montana, there are two distinct attitudes: those who are pro wolf and those who think the only good wolf is a dead wolf (think ranchers). Wolves are extremely controversial here and it makes me laugh to have an illness named after a controversial animal. Perfect and so typically me. Anyhow, there will always be people who don't understand and don't want to understand but are compelled to share anyhow. Can't let those people get to us. Most of them mean no harm for they are just plain ignorant and the few that do mean harm, well there are ways to deal with them as well... but it is better to have selective hearing and thick skin in that case.

craftkeeper
04-11-2011, 02:21 AM
Thanks Maggi and Ruziska, you are both so right. No one really knows until it happens to them. Like most people i never really gave it much thought either until i myself was diagnosed. I have one friend who wants me to ditch all of my meds and go the natural route. I've explained to her that this is not possible. but i am always arguing with her on the subject. She thinks her acupuncturist and drinking some sort of mud from France is the way to go. She says she doesn't believe in Western doctors, but when her father became ill with heart problems she quickly loaded him up to have a pace maker put in by a western Doctor. The year before her mother passed, she went to many doctors for help. There's always someone ready to give that good advice even if they dont really believe in it themselves. Not saying that an acupuncturist is not good. He might possibly be able to help with symptoms, but not cure the problem. Eh, i love em all anyway.

rob
04-11-2011, 05:20 AM
I have one friend who wants me to ditch all of my meds and go the natural route. I've explained to her that this is not possible. but i am always arguing with her on the subject. She thinks her acupuncturist and drinking some sort of mud from France is the way to go.

You should tell her that there are people with Lupus who have taken advice like this out of fear or desperation, and have died as a result. I know of at least one person here at WHL who lost a loved one as a direct result of ditching real meds and trying some so called natural "miracle cure".

It's almost like it's a game for these people. Like they don't understand that people can be harmed, or even die were they to take their foolish advice. Ask her if she was diagnosed with a chronic, incurable, and sometimes fatal illness, if she would take her own advice.

Rob

PS-The drinking some mud from France thing made me laugh!