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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/2/2010 6:10 PM (GMT -7)   
So I was just told that this disease, Lupus, is mind over matter! That if you have a positive outlook on life and the disease you will be so much better. I am sorry but I believe that I have had the best attitude that a person can have while fighting this. I generally stay happy even in horrible pain, which I know most of you experience. The person even went as far to say that I caused my kidneys problems because I was letting lupus win. That if I wouldnt have "let the wolf take control of my life, I would be medicine free"??? WT*? Oh boy, I am so angry right now.


I know that your mindset has a lot to do with how you feel but I have tried my hardest to be upbeat and not let lupus control my life. How can someone just pop in that doesnt even know me, just saw that I had lupus, tell me that I have caused myself to develop lupus and then caused the lupus to spread to my kidneys and lungs?



I know several of you have probably had something along these lines happen to you...How do you handle it?



Sorry for the vent, I just needed to get my thoughts out before I exploded.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/2/2010 6:54 PM (GMT -7)   
Who did this to you??? I hope it wasn't a medical person!!! If not, you just have to realize some people are just not very well informed or just plain dumb as nails.

I also think you are not human if you don't occasionally get a little down. It's only natural. Then, you pick yourself back up. I know, it's all I can do.

If that was a medical person, I would complain to their superior big time!!!!! They have no business seeing patients with strange theories like that.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/2/2010 7:27 PM (GMT -7)   
Some people are dumb!

I am sorry that someone that stupid had the gall to say that to you.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 6/2/2010 7:53 PM (GMT -7)   
Oh Amy, what a doofus. People like that are ignorant and completely absorbed with themselves - hense the lack of compassion towards others. I've had people say things like that to me too. I usually have the ability to hold in my comments with stupid remarks that don't have anything to do with my Lupus. But when it comes to this disease and I get those ignorant comments, I lose it. I can't help it. LOL.

Just for the record, I think you ARE the most incredibly positive person with a chronic disease that I know! I'm always blown away by your attitude. You rock lady!!

Love ya girlie!
Moderator of Lupus and Fibromyalgia forums

36 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Imuran, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/2/2010 8:11 PM (GMT -7)   
People are just plain stupid sometimes. Ignore them. Better yet, chop those suckers right on out of your life!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 6/2/2010 10:00 PM (GMT -7)   
Amy!
 
I am sorry this happened.  Yes this has happened to me as well.  I also get the "you know that .................(fill in the blank with something absurd)............will cure MS (or fill in your own disease). 
 
Sigh.  It does get old.  You just have to remember that they don't know what you go through.  If they did, they would not handle it as well as you do.  You are brave and strong in this fight!!! 
 
I have this one co-worker that really minimalizes my disease.  One time, I had just bought a copy of MS for dummies.  I was so tickled with this book!  I brought it to work to show some buddies.  Her response was, "Oh my gosh, why on earth would any one need a whole book about MS?"
 
This co-worker is the worst when she is sick.  Her colds are definitely worse than anyone elses.  I am sure she would NOT be working if she felt like I did.
 
I also had another person give me a copy of the book "secret".  Ok if you haven't read that, it is crap!  Its says that you control everything that has ever happened to you.  You sent out these messages to the universe and they were returned to you.  If you think positive thoughts then good things happen.  If you are negative then you have the universe to reflect that back to you.  Ok NO.  This is NOT what I believe.  I will NOT accept responsibility for getting this and neither are you!
 
Try to keep all this in mind.  YOU ARE STRONG.  YOU ARE BRAVE.  YOU ARE LIVING THE BEST LIFE YOU CAN.  YOU DON'T NEED TO CHANGE. 
 
You are very loved, Amy.  Your spirit is an inspiration to us all. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 6/3/2010 6:19 AM (GMT -7)   
Hear! Hear! Amy! I've been going to church for a few months. Recently a greeter called me. She asked if I had joined any of the volunteer groups and I said no, I have lupus which limits my energy. She then said there is a young woman in our parish who cured herself of lupus thru prayer. My reply: I've already found my wonder drug, Cellept, which allows me to lead a pretty good life and I will not risk discontinuing it. She said that's great and she understood.
 
What I really think when I hear things like this is the people who cured themselves either thru prayer, positive energy, or any other *#^%ing magic, have a mild case of lupus and they're in remission. Go ahead folks: write your books and tell your testimonials. Every case of lupus is different. Love, Butterflake
 
 
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/3/2010 8:47 AM (GMT -7)   
Oh jeanneac, sjkly, ginny, lynnwood, Gretch, and Donna! Thank you for your replies. I have no idea why this irked me so bad last night. When I re-read what was sent to me this morning, I just laughed at it.

jeanneac-this was deffinatly not a health professional. It was someone commenting on a group on facebook who then sent me a message! I blocked that person this morning, I don't want to ever speak to her again. LOL

Thank you all for your nice words. This was the first time that I was blatently told I had caused myself all of the issues I have. I guess I was tired and was actually shocked to hear someone say that. Gretchin, you are right, we didnt cause this to happen to ourselves, thank you for the reminder and thank you for the heads up about Secret, I will deffinalty NOT be reading that one.

Donna- I can't stand the people who "cures" themselves. At least I can't stand their preaching about it. If they really had lupus and cured themselves, I think we would have heard about it by now. People try to sell me their healing products from church and work and I do get a laugh at some of them. Some of the suggestions are crazy!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/3/2010 2:55 PM (GMT -7)   
I hate those I cured myself stories every time one comes out my mother starts her bull again. I am so sick of people telling me if I only did this or that I would feel better. The only person I will listen to on that is my rheumy. I really wish we could educate the world.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 6/3/2010 7:01 PM (GMT -7)   
Amy, I am so sorry. From reading your posts, I have always thought you to be a very positive person. Shame on this person for spouting off about something they have no knowledge of. My youngest stepdaughter is an STNA (what used to be an LPN). She is always rolling her eyes and making comments, my faves are "how can you do things on some days but not on other days" and "I would love to see your test results". Luckily my DH is very good about telling her to back off. People really have no idea of what this disease entails.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/4/2010 1:15 AM (GMT -7)   
Amy,
If that person could walk in your shoes for a few days he/she would never say something so stupid again. People like that ruffle my feathers!

Babs

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/4/2010 6:20 AM (GMT -7)   
No one truly knows do they. That's why I keep finding my way back here. You're the best.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/4/2010 6:51 AM (GMT -7)   
Amy, it's hard to ignore know-it-all people or rude and pushy people who want to push their thoughtless opinions on someone else. If you can, ignore them, or come up with a cheeky response to them, and walk away. Don't let ignorant people affect how you feel about yourself and what you know.


My hubby had a colonoscopy yesterday and when I went back in the recovery room I noticed that all of the nurses were being especially sweet to me. I just thought they were sweet nurses and left it at that. My hubby told me later that he had heard conversations about the head nurse having to quit because she has lupus, so while talking about all of this, he told them that his wife has lupus. That accounted for all the sweet smiles and attention.

So you see, not all of the world is ignorant and rude. We need to hang around people who acknowledge and respect us and leave the others behind.

Bless you Amy.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

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