Some people mean well.....

[vickijo]

Well, my husband is finally coming around I think.....but most of the other people in my life don't have a clue.

Namely....my boss! I had my appointment yesterday, so he asked me about it this morning....he immediately told me he knows of a supplement of some sort that I should be taking and I'd never be sick again!!

Please tell me....how do you resond to something like this???? I wasn't really sure what to say....but he ticked me off....like this was just a common cold or something.
style_emoticons/<#EMO_DIR#>/hissy1.gif

Please help!
Thanks!
Vicki

[alobreto]

Hi, Vicki! style_emoticons/<#EMO_DIR#>/wink.gif
You're right that there are a lot of ignorant folks out there who believe they aren't ignorant.

You can graciously accept their advice or their supplements and ask about the results of the double blind clinical trials supporting their assertions as you can't take untested substances and have to consult your doctor, too, and s/he'll have to have the information anyway.

Of course, you accept with the sweetest of smiles. If they respond with anecdotal reports (testimonials by a few individuals) you'll need to repeat your request for the data on the double blind clinical trials because testimonials are unreliable and you really DO want to do the right thing for your health. What only helps a few people does not have adequate evidence to support its use.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[zara]

As long as lupus is an elusive and poorly understood disease people will see an easy target for their "miracle cures".

That being said, the world is full of crackpots.

[bugsy]

<span style="color:#FF6666"><span style="font-size:10pt;line-height:100%">Hiya Vickijo style_emoticons/<#EMO_DIR#>/wavey.gif

I agree with Nikki (zara) its because people have no idea what lupus is, if they did then people wouldn't tell you about these so called miracle cures.

Just a thought but could you print some information off this site about lupus and maybe show it to your boss, he may feel a fool after what he told you about.

Every time i see my next door neighbour she tells me 'well you look well anyway' style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif style_emoticons/<#EMO_DIR#>/hissy1.gif this can be said to me after no sleep all night because of pain - i might take her to the opticians with me next time i go style_emoticons/<#EMO_DIR#>/tongue.gif , again this is because she is ignorant to the disease in which we have.

Take care - style_emoticons/<#EMO_DIR#>/hugbetter.gif XxX Jo XxX</span></span>

[chantal]

hahaha yep its true they do mean well, but i know how u feel. I have people always telling me about ?cures? they have heard about, and my parents actually gave me a bottle of EMU OIL for Christmas and told me to take like 6 a day and the lady they bought it from said its good for lupus. And im sure u dont really "look" sick enough for your boss to even realize how sick you really are, it is hard not many people realize what lupus even is

style_emoticons/<#EMO_DIR#>/foryou.gif

[dumplie]

I know how you all feel. My husband and son are very supportive and can see the pain that I am in. However, some of my family live in cuckoo land.

My aunt told me that my pain is all in my mind and it is a case of 'mind over matter'. Yeah, right. Then the other day my sister was complaining about a sore on her foot. Her exact words were, 'You will never understand the pain that I am in'. Ofcourse I wouldn't understand. What would I know about pain?

The problem I find is that I cannot put into words how this illness makes me feel. I cannot compare the pain and tiredness to anything else. How do you tell someone that when you are exhausted you are literally fighting to stay awake? Yet when I go to bed early I am in so much pain I cannot sleep.

I am thankful for my wonderful husband and son as they keep me relatively sane! style_emoticons/<#EMO_DIR#>/rotfl.gif

Thanks for allowing me to vent.

Janine

[jm_jazzy]

Vicki,

This has happened to me and I responded by saying as little a possible about what the doctor said. I did however, get a print out from a lupus site which explained the condition and then made it clear that I didn't wish to talk about it.

I was told by one associate that I brought it on by my thoughts! GRRRR style_emoticons/<#EMO_DIR#>/hissy1.gif So I agreed and said yes I probably did by my negative thoughts just like she brought on her infertility but I was working on it and I was sure with time I can reverse it. Evil I know but there is nothing worse than well meaning busy bodies.

The offer of suppliments from another person, which would change my life. I thanked them for the suggestion and then mentioned that I couldn't take supplements without my doctors approval as they could interact badly with my medication. In fact some of them could even kill me! So, I will try modern medicine first and if it hasn't worked after a while I will probably try them then. Thanks for the offer.

It is an ongoing process educating people. Just don't let them get to you.

Bye for now.

Jodie style_emoticons/<#EMO_DIR#>/wub.gif

[BethannUK]

A miracle cure!

I found it ! Honest it would works!

You know how there are all those people who give such good advice, suggestions, and who know that just getting a bit more work done will solve all your problems? These people obviously know so much about getting along when it's tough.... Lets collect em all- and have as a "survivior" type reality TV show and they can all help each other, out there in the wilderness, to their hearts delight. What kinds of teams- a fitness and health shake guru, "My Dear In-Law", and a "Specialist Rheumatologist". Don't they sound like good teams? Take away all the sun screen so their skin gets sore and red, lets make sure they get as little sleep as possible so they are always tired, make sure they only get criticism... make sure they have to wear braces and splints to make it harder for their muscles and joints to move... and on top of it all remind them how much fun they should be having because they are in a tropical paradise. Lets put everything on shelves that are too high to reach, and lets tell them over and over again that they shouldnt be hungry- or tired- or need to use the loo- because if they just tried a little harder they could overcome all those things.

Maybe lets handcuff them together to make sure they spend as much quality time as possible... can you imagine all the fun when they all want their own way and each one of em is more right than the other???? Lets see how bright all their blippin ideas are when they are out there in the real world - mu-hahahahaaa!

You watch- this show will wind up on Fox, Im telling you.

Ok, It doesnt make your autoimmune disease any better, but it sure might make it easier to cope with.

Yep Ive lost it, I admit it. It's official. Can anyone tell I am nervous about going to US tomorrow???

(hope this cheered someone up)

[Rene]

Ignorant people!!!OOOHH, Aren't they such fun to deal with!! style_emoticons/<#EMO_DIR#>/hissy1.gif I have just given up!! I either get the miracle cure suggestions or people tell me about someone who died with lupus. style_emoticons/<#EMO_DIR#>/blink.gif I also get the everyone has aches and pains.... We all hurt...Your no different.... So I don't even try to explain it anymore. They will never get it, unless they get it...... If you know what I mean!! GOD BLESS!!!!!! style_emoticons/<#EMO_DIR#>/biggrin.gif

[busylizzie]

Hi Vicki style_emoticons/<#EMO_DIR#>/wavey.gif

I used to really battle with this but mostly now I let it go over my head because I've heard it so many times. style_emoticons/<#EMO_DIR#>/hissy1.gif However, I have had a problem lately with one of my friends who seems to have turned herself into a counsellor and tells me I should find something to look forward to and that it's easy to immerse yourself in misery! style_emoticons/<#EMO_DIR#>/hissy1.gif I have been very down lately but who doesn't get down with this flipping illness and I usually put on a front with my friends anyway because I don't want them to get fed up with me. This particular friend is one who runs marathons - how can she understand that a walk to the local shops is exhausting?! style_emoticons/<#EMO_DIR#>/crying.gif I just have to grit my teeth or I might say something I'll regret! style_emoticons/<#EMO_DIR#>/wacko.gif

[vickijo]

Okay...sounds like everyone knows what I mean...hehehehe...I hit a nerve!!

So, now here's another question....

So what do we do about it? My big question is....how do I deal with my boss? I am half afraid to say too much thinking he will can me if he thinks I can't handle my job anymore.....How much to I tell him? And how do I tell him???

Help

Vicki

[misrambo]

<div class='quotetop'>QUOTE(vickijo @ Apr 14 2006, 02:34 PM) Quoted post</div><div class='quotemain'>
Okay...sounds like everyone knows what I mean...hehehehe...I hit a nerve!!

So, now here's another question....

So what do we do about it? My big question is....how do I deal with my boss? I am half afraid to say too much thinking he will can me if he thinks I can't handle my job anymore.....How much to I tell him? And how do I tell him???

Help

Vicki
[/b][/quote]
Hi Vicki,
If you have a company nurse, ask her about the policy on FMLA. It is a government regulated document in the US. I too was afraid of loosing my job until I was told about this. I fill out the paperwork every year and as long as it is on time. I can be out of work as needed. Even though this is called Family Medical Leave, understand it can be for you too! Mine is intermittent so I can be out if I have a headache or a Dr app. or just don't feel well. Hope this helps!!

Melinda

[evep]

[size=2]I'm new to this but understand... My husband just want to know if he could get it.. My kids have asked a few questions.. But my boss just say you know what it is can you come back to work now..I told him just started the meds and doctors said until my legs and ankles don't swell anymore have to stay home..He calls every couple of days and ask feeling better...The one day told him it was a good day got out of bed and had a shower.. and when I could walk for a couple of hours I would call him back..He just said ok.. Now he asks my husband when he sees him..My one friend more or else told everyone that I will never work again or get any better.. But my sick leave is almost up for this year.. In Ontario we get 15 weeks of sick leave a year through unemployment...

evelyn

[barefut]

Miracle cures..........yea. We don't need miracle cures ya know. We just need to "eat right" and "get some exercise" and "take vitamins" and we'd all be cured in a jiffy.

Oh and I almost forgot, "dont stress" either.

There. Y'all got it? That's all we need to do! style_emoticons/<#EMO_DIR#>/wink.gif

[Douglas]

One of my friends is forever - wait a minute! - two of my friends and several acquaintances are forever suggesting medications, dietary changes or (even worse!) crackpot pseudo-academic papers "and if you do what it says you'll be fine".
They are not my boss (thank God for retirement!) but I smile, say thank you, and carry on. If your boss can't cope with the fact that it is *your* life, and that you are dealing with your illness responsibly, maybe you need another boss.

[ami42]

I know it sounds frustrating to have people offer up all these possible "cures/help".....but, at least you have friends who care so much. When people offer up advice or articles on possible cures - I just tend to thank them for thinking of me & say I'll look into it. At times though it's things I'm already doing so I try to help explain it to them. The stuff we take & labwork, testing is confusing enough for us though so most people have no idea what it means.

Thank God for the blessing of my husband and family who have been tremendously supportive.

Love,
Ami

[chelly]

They want to help. I know a lot of people that do. They do want you to feel better and sometimes they feel helpless.

On the bright-side. I postion was taken away and I was informed by my boss that she doesn't think there is anything wrong with me.

[lilikeke]

style_emoticons/<#EMO_DIR#>/tongue.gif Oh yes the "eat right" and "exercise." Do they realize it hurts too much to exercise? I've only been going through this a year and my dad is really the only one who understands. My mom tries to but I don't think she gets it. She tries though and I gotta give her that much. Thankfully my botfriend and friends are very supportive. I just continue thinking maybe one day soon this disease will go into remission. Hopefully soon. But I'm not gonna get my hopes up.

[alobreto]

We know a LOT about this, don't we? style_emoticons/<#EMO_DIR#>/crying.gif

I agree that much of it is due to people actually giving a hoot about how we're doing. But there are MANY that just want to BLAME us for being ill. They can tell us what they've read and if we don't do whatever was recommended in their reading material from whatever source, then somehow we DESERVE to be ill.

People who have the gall to say they are smarter than our doctors need to be asked exactly where they studied medicine and when they did their rheumatology residency. Also, what year they graduated and how many continuing education units in autoimmune problems they complete each year on average.

I can be very bold here in writing, but most of the time I just thank these idiots for their concern and tell them I'll let my doctors know about their offered opinion. style_emoticons/<#EMO_DIR#>/bigsmile.gif
Angela style_emoticons/<#EMO_DIR#>/ok.gif