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ok last straw...why does everyone seem to think lupus can be cured by x x or x!!! probiotic drinks, wierd diets, herbal remedies, acupunture, reiki, lotions and potions...sorry just had it up to here and need to vent to people who understand!

ARGHHHHH!!!!!!
Rachel
 

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Yes Rachel (((((((hugs))))))

It is one of those things that it seems we must suffer on top of everything else :mad:

I won't say what I think of such supposedly well-meaning suggestions - I'd be banned if I did.

hugs :hug:
Katharine
 

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I completely identify with your frustration, Rachel.

I have had all that thrown at me since becoming ill, and one person in particular, had the nerve to suggest, that I brought the illness on myself, by
possibly holding grudges..:lol::lol:

She thought that since our hearts/minds, body, and spirit are all connected that when one of the three parts is ill, it causes the body to become ill, as well.

I am sure she meant well...as most of the people offering a suggested cure do.

I think, they feel helpless, in not being able to help us..so rather than just give a silent hug, they have to take some sort of action..so they feel the need to ask.. have you tried such and such?..and so on..It's just my thought on the subject.

I find on days when I am so ill..I really don't like people. I really have to be alone. I can barely tolerate me, much less other's. I just don't have the strength to keep going, and cope with other's also. I am sure it is a common theme for those dealing with chronic illness, and pain. When we are in other's company, we want to be pleasant. I am the sort that want to please other's by nature, so I drain myself..trying to put up a good front, which is all just too much, most often.

Rachel, I am sorry you ran into one of those people that feel the need to "fix" you. :(

Hang in there friend.

I want to say also, that trying any herbal remedies without consulting our drs, first could be fatal at worse.

I am one that did try some herbal elixer that my dear dad suggested I try. He was using it to help treat his cancer, and thought it may help me.

I was very ill then, and had no clue at the time what was wrong with me. Pre - diagnosis. Anyway, I drank the potion :eek:. It was loaded with immune system stimulants..Probably worked great for my dear dad's cancer, but, it was devastating for my body. I started slurring my speech, falling down, seeing double. I ended up in E.R.

So, any newbies reading this post, please learn from my almost fatal experience, please?

Love,
Sandy
 

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I was only diagnosed in the last two months, and already I've had so many people tell me that I'll get better, or I'll be fine when my medication starts working. Even my own mother filled in some form for some info on a crappy herbal remedy for rheumatoid arthritis (which I don't have mother, lupus is completely different). It's crazy bonkers.
 

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Hi

Alimonkey - I know just what you mean - I've also suffered from the "you'll be fine just as soon as the medication kicks in" - as though just saying it makes it true. I know they mean well and have in mind the placebo effect, but when you have been ill for so long with everyone telling you that you're all right -or even imagining things - its hard now to take their advice seriously!

Merle
 

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Hi and GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR 2

Yep ive had it all I was the one who started looking 4 why.
Read a book Natural Cures "They dont want you to know about.;)
Priceless that one think I brainwashed myself at the time.:rotfl:

Specially as all meds my rheumy was trying on me didnt work at the time.:eek: (perhaps its all in the mind lol:wink2:) WHAT A LOAD OF TOSH. SLE and connective tissue disease are hard to treat. Eventually the meds started to work.:p:p:p

Also my MOTHER also well meaning suggested a book. My uncle who had cancer recommended
Something about Why do some people heal and others dont.:eek::eek::eek:
YIKES this was worse than the other book. Read along the lines that some people LIKE being ill and the POWER they have over others.(sorry dont get it) Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

Made me soooooooooo angry as If I would choose to be ill.:sad::sad::sad: Sooo stressed me out.

Ok I know when someone is seriously ill they get desperate. I know Ive been there (kicked the bucket and all but Im still here) The things you will try even went to a Witch Dr healer that was a joke and expensive. Then Ive tried a healer who prayed over me that was nice but who knows.

SO THATS MY RANT OVER

dixy
 

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hidy hoe guys

i actually got a book for spiritual healing, i was praying alot and thought this may help...boy was i wrong.
this goober was a doctor but you would never know by what is was spueing. first he said that there are no chonic or uncurable diseases. that people are sick because they aren't right with god. that sin and guilt is whats causing their problems. that grudges we hold is making us sick. all we need to do is forgive everyone, and make right the things we did to others to rid the guilt. HA!!!!
needless to say i stop reading and threw it in the trash. what a waste of 20 bucks.
i just ignore those types and will usually not even egage with them. but hey...what can you do.

hugs and kisses
 

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I want to scream with you.... I hate even mentioning here at work that I feel bad, because everyone also has an answer to why you are feeling bad and they don't even have a clue.... Let us all Unite and scream... AAAAAHHHHHHHHHHHH!!!! There now, don't you feel better...

Hope you are having a pain free day...
 

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OOoohhh yes I can so relate, and worse culprits......FAMILY!

If I had a pound for every remedy known to man to be thrown my way as a suggestion, I be a rich woman!

I now say, I appreciate the suggestion, but if there was some 'alternative' that worked, those in the Lupus world would know about it, and we would all be on it! Please leave my medicinal regime to my medics who are taking good care of me.

Has kept the 'suggestions' at bay for the last 3 - 4 months thank goods.

I join you in your united screams!
 

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Discussion Starter #10
hey but listen to this you guys -according to my (well meaning?) friend it's just a case of giving the 'healer' he knows a photo of youself and he sends postive vibes your way and BINGO!! we cured! even works for cancer !!!!???????????????????


...and to take the biscuit if it doesn't work it's because the sufferer doesn't want to get better...some people like being sick it seems!!:eek:

AAAAAARGHHHHHHHHHHHHH :mad:

love to all
rachel
 

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Hmmmm, well Rachel, frustrating as it seems incompatibility does exist for many reasons - you know my thoughts on this one!!

I think many of us would give an arm and a leg to "get better" so to be accused of not wanting to might just push me over the edge and I wouldn't be responsible for my actions.

hugs :hug:

Katharine
 

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Discussion Starter #12
well yes i did very nearly throw my drink at him.......but decided to be mature and repsectful of other peoples' beliefs...god knows why!!!
 

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You know it's funny. I come from a medically trained family. My grandpa was a pharmacist, mom a hygenist, 3 uncles are Drs..,couple of nurses thrown in to boot.

My family, thank goodness, has not pressed me to do anything but what my Dr's recommend, they may question things to make sure I have thought things through, but they don't come up with wacky cures or suggestions of how it's in my head or I don't want to be well....all that stuff.

I get it from strangers and "dear" friends who only care about my well being! These are usually the people who believe Dr's are just out to make money and are in league with the pharmasutical companies to "milk" us dry and do nothing but make us sicker so they can make more money off us.

I always thank them for their thoughtfullness, tell them I can't afford any alternative treatments, however if they wish to pay for it for as long as it take to "cure" me, I will be happy to accept their help....funny how they all cringe and say well if you don't want to try it I understand...they never suggest things like this again, and they are not offended because I didn't say no.

Of course I don't know what I would do the first time someone accepts my challenge???

"PUT YOUR MONEY WHERE YOUR MOUTH IS" is my motto these days...it so far had shut em up real fast.

Stephanie
 

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Discussion Starter #14
Stephanine!!

that makes me laugh as appartenly this miracle cure is free!!! dug myself a hole there!!!

Rachel
 

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Yep ................... interesting topic, totally agree with everyones replies.
been there, done it, had the works !
Work folk - oh ! not too good today, maybe go rest when at home, have lie down ! have hot bath/soak
family/friends - no idea what THE **** im living with. Told hubby to read my lupus book (then he will know and understand more) hes not bothered to seek and read the damn thing. when you tell hub and family "Im in pain all time and sore etc" they say go have lie down, go get HOT BATH.
ARGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHH ...... what the **** does these people know about what im going through, no "normal" people will ever understand, this a weird thing to get ANYONE to understand any of it,
isnt it ????????

Ive had spiritual healing, crystal therapy, chiropractor (that horrendous the movements and pain NEARLY killed me in agony, felt worse than went in to chiros practice.
Realised years ago, somethings funny is happening, so one can get rid of this whole body pain, anything i try aint working. now i understand.

love and hugs Diane X
 

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Rachel,

It may make you feel better to know that my husbands chiropractor told him to tell me if I massage my toes daily for 10 minutes all the toxins will be removed from my body and I will be cured.:lol::lol::lol::lol::lol:

I hate stupid people.

Keep your chin up my friend and let ignorance roll off your back.:wink2:
 

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Haha, I like that Karol, the toes.... mind you, just recently when I really went into total "I'm going to turn to stone mode" my physiotherapist did a very very light back massage and some reflexology for the back and it did actually give me quite a bit of relief - more than the hot bath anyway :lol:

As for people who don't understand flamenco, have you had a look at the "just for family, friends, caregivers" forum? The first three "stickies" on that forum are very useful (and short enough) for explaining to others. I've found them great if they're interested enough. if they're not, then tough for them!!

Also, describing a normal day as if you are having a "half-flu" and a bad day as "full-blown flu" can sometimes help.

Unfortunately though many people don't want to know, others don't know how to deal with it (and bathe in denial) and others get frustrated because they can't "fix" it (often men). It's not an easy disease for us to live with but I wouldn't want to have to watch the person I loved go through it either...

Katharine
 

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I have to laugh when Katharine mentions denial.

I am known by many as the Queen of Denial myself.:lol::lol::lol:
 
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