Oh Lawd! If I had a dime for all the well-meaning advice I've gotten. How many of you have gotten the "Aspartame causes Lupus" email from a family member or friend? My husband drinks the stuff by the gallon (Diet Coke is his addiction of choice) and no Lupus, no MS, none of that stuff. Me, can't stand the stuff.
Like Ruziska, just a few minutes of sun and my skin is bright red and and swelling. I'm better now but I used to go down with fever and joint pain from it. Yes, healthy people should get 10-20 minutes a day. But not most of us. We have to make do with what we get under our hats and sunblock and take our calcium and vitamin D through our diet.
I had a coworker who believed all ills were caused by allergies. She said I got sick when I came to work because the mold spore levels in town were higher than out in the burbs. I learned later that it was the UV lighting in the labs. I'm sure the mold didn't help but it wasn't the cause. (besides, I lived out near the rice fields - can you say "mold heaven"?) Also, my joint pain was a dairy allergy according to her. uh. yeah. So I gave up dairy. I'm still in pain.
Whatever. Sometimes you just have to smile at them and nod politely. You can't argue with these experts. You know your body and what it reacts to. Even another lupie can only relate what they have experienced and it may not match up with what you experience.
There are so many people out there "that know it all", but really all they know is "Nothing" Great thread!!!!
'Friends are like stars.....You don't always see them, but you know they are there.'
The last thing, I have heard, from a "friend", " this disease can't be as bad as you say, you look so healthy".
Yeah, I know, I take 10 pills a day and give myself a weekly shot, just for the heck of it.
People like that really get on my nerv.
My joints are ruined and hurt, my muscles hurt, I have headaches, stomach problems, skin problems, I am so dizzy at times that I can't walk( or better, I CAN walk, right into the wall or door), my fingers are starting to cripple, BUT I LOOK GOOD. Well I guess, that is a good thing, I could look really bad. I am so glad that my friend thinks it's nothing serious.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).
Say to your "friend" That is my intention to always look good so people don't know how I am really feeling. Thank you for complimenting me.The last thing, I have heard, from a "friend", " this disease can't be as bad as you say, you look so healthy".
Diagnosed with Lupus - 22 June, 2010
I had lunch with an old friend last week. I had to crawl out of bed to keep this lunch date because I had not seen her in such a long time. I literally felt like S@#t, but I made an effort to put on a bit of makeup, comb my hair, get dressed, drive to the restaurant to meet her. She has known about my diseases and also knew that I have been having a very hard time for the past 4 months. So, I arrive at the restaurant, moving at a snails pace, and I see her watching me as I make my way to the table. Her first comment was, "I thought you said you had been sick. You trying to get attention or sympathy cuz nobody that beautiful can be as sick as you claim to be!"
Why did I have to fight back the urge to pick up the wine bottle and smash it over her head??? She then proceeded to tell me that Fibromyalgia was not a real disease, it was something invented by doctors to lump curious ailments in when they had no answers...that I could not have Lupus because I don't have any manifestations on my skin and that, if I exercised vigorously and drank copious amounts of water, and de-toxed every month..I could "Cure" whatever disease I claimed to have.
Needles to say, I refused to respond to any of her "expert" opinions, finished the meal making polite conversation, and after eating my meal, I politely excused myself stating that I was going to the ladies room. I walked out of the restaurant, got into my car and drove home.
I had three phone calls from her when I arrived home..I haven't listened to the messages (nor am I going to) and have not returned her phone calls. I certainly hope that she figures out what I am saying to her (by not saying it), and perhaps she will remember this incident and my reaction, if she ever decides to tell someone else, who is living with an illness, that she knows more about it than they do.
I agree with Steve's definition of "ex spurt" wholeheartedly
Peace and Blessings
Last edited by Saysusie; 07-31-2011 at 11:44 PM.
Look For The Good and Praise It!
good on you susie for standing (walking) your ground.
sometimes we try so hard to be polite, when we need to be true instead.