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October 08, 2009 03:02 AM
I have Lupus. Have you ever known anyone with Lupus?
Lupus is a chronic, progressive, and sometimes fatal disease. I was diagnosed with it when I was 32 years old, which is a pretty common age for women to get it. Prior to that, they thought I had MS. There are days I wish it had been MS.
Recently, they have determined I might have Addison's Disease, due to the lupus messing with my adrenal glands. I have fibromyalgia pain, weakness, all the classic symptoms. I'm a mess! LOL
But I'm a survivor too. Lupus is actually NOT rare, but you don't hear about it much. Have you ever known someone with Lupus? Do you have it? Tell your stories!
Recently, they have determined I might have Addison's Disease, due to the lupus messing with my adrenal glands. I have fibromyalgia pain, weakness, all the classic symptoms. I'm a mess! LOL
But I'm a survivor too. Lupus is actually NOT rare, but you don't hear about it much. Have you ever known someone with Lupus? Do you have it? Tell your stories!
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- About Systemic Lupus Erythematosus (SLE) |
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| October 08, 2009 07:59 AM |
Plus... my mom also *does* have MS... and I can see how you already know they can be confused with each other, so imagine the runaround the diagnosticians had over *that* one.
She was diagnsed when she was in her middle 30's, and they were telling her that because of the MS she should expect, and be prepared to be drooling and in a wheelchair by the time she was 48, and to not plan on making it past 50.
Well... she's 72 now, and she's still walking around on her own two feet, not crippled or in a chair, she still puts in big days every day, and in she's still running and building up a business (http://driftwillowpress.com) because she couldn't stand the bordom of retirement.
A lot of people say she's gotten through on attitude, because she does have a very powerfull will... she's one of those people who makes up her mind to do something and you might as well just get used to it and might as well help her out along the way in order to get it done faster and make it less chaotic, because she won't stop until it's done, period.
BUT... she has a little secret.
It turns out that if you've got highland Norweigen heritage, there's a funny little genetic condition that comes from the highland variety of Norweigans (like Germans, there's the lowland variety that are tall and blond and blue-eyed, and then there's the highland variety that are short and stocky and grey eyed with charcole black hair.... what Germans call Bavarians) such that if you've got that heritage, *and* if you avoid *bovine* fats (i.e. beef fat, which means butter, and hamburgers, and steak, and all that other great stuff), then for some reason neither MS nor Lupus take hold as bad.
What she found was that she can eat chicken, and fish, and lamb (sheep), and chevre (goat), and she can eat chevre cheeze all she wants, and she's not bothered much with symptoms, but if she gets one mouthfull of beef fat, then she can start to feel the pain, and will be down for a week.
The last round was when she was at a barbeque, and she asked the host if they were pork weiners, and the host said yes, so she helped herself, but no, they had beef in them, and bang, she got hit with an outbreak and was down for a couple weeks.
She's back up again, by reverting to and sticking to her strick no-bovine-fat diet.
She even bought some land and started rasing goats so she could milk them and make chevre cheeze for that reason, and her chevre cheeze is *really* good, good enough that she was able to open up a goat's milk creamery and cheeze shop.
So... I don't know if that helps, but check your diet, and as an experiment try cutting out all the beef fat.
That does *not* mean cutting out fat altogether, because pork is plenty greasy, and that's not a problem. It's just fat from *beef*.
That leaves open lamb (sheep), and chevre (goat), and turky, and chicken, and goose, and duck, and partridge, and pheasant, and every fish and seafood you can think of.
It means cutting *out* virtually all commercial cheezes, but goat cheeze is actually really good, and like cow cheeze, what you get is based on the yeast, and it comes in many varieties, and sweet fresh goats milk is great (I learned to like all of that stuff because... that's what me and my sibs eat when we're with her) but it means cutting out commercial butter, however, frankly, the manufacturers have gotten really good at making excellent margarines these days... my favorite is olive oil Becel.
And you know, it doesn't suprise me, because in high school I did a study of what the fatty acids were that made up the fats of various food, and so I saw charts of what different find of fatty acid were to be found in olive oil, and fish oils, and bird fats, and pork fat, and beef fat, and yes... human fat.
And one thing struck me. In terms of fatty acid content, *ntohing* was more different from the fatty acids that make up human fat than beef fat. Basically, if you eat beef fat, your body has to break it *all* down and reassemble it into different fatty acids to keep it in the body as fat.
And... you're never going to guess which food's fat is made of a combination of fatty acids closest to human... are you ready...? It's corn oil. Yes... if human fat were rendered down into an oil, it would be hard to distinguish from corn oil.
I know that Lupis is common for women, and that they can live a long, long time with it, but if you wanna try cuttng out beef fat, then I'll be very curious to hear if that helps.
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• thank you so much for this answer. I've read about this before, and yet I'd never heard anyone who tried it with success. I loooove meat. I adore cheeses, but I like being pain-free better, and some days, the pain is excruciating. This IS worth a try. I like that you're saying my husband should join in! LOL He is an uber-healthy eater already so he won't mind, but his twin brother lives with us, and I'm going to have to pry the steak out of his cold, dead heads. (chuckle)
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Other Answers (11)
October 08, 2009 03:11 AM
Yes my mother had Lupus. She was diagnosed in the 80's when they didn't really treat you with much more than Tylenol for the pain. she did not live long after her diagnosis. She did not pass away due to Lupus however. So I really do not know much to tell you other than I understand the pain and I hope they have more for you now than they did in the 1980's.
Source(s):
personal memories
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October 08, 2009 06:46 AM
my mother also has lupus, she has been suffering with this along with leukemia and terrible migraines for years... in and out of the hospital daily. It is a trialing thing for her but she is pulling through. I think part of this disease has alot to do with stress like many things. I tell you though She is a fighter like yourself still running on ever readys =) But hey If u ever have any questions, I can ask her more about this if needed. Thanks Mike !
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October 08, 2009 12:41 PM
I had a dear friend who lived with Lupus for most of her life. She was misdiagnosed with a number of other illnesses over the years. I have never seen a disease so capable of mirroring other diseases in my life! It was painful to watch her deal with what she had to face every day. The joint pain, exhaustion, painful rashes, arthritis and osteoporosis symptoms she experienced often left her unable to function. She was an incredibly talented pianist and singer. Within a few years of friendship, she was no longer able to play or sing (both things she loved to do more than anything else) because of the severe pain. I think sometimes knowing that and having to admit there were things she could no longer do hurt her more than the pain itself.
I'm convinced that people dealing with Lupus who continue to face life and live it with a good attitude are some of the strongest and most inspirational people I know. I saw it firsthand with my friend. She was a trooper 'til the end.
The page you built is excellent. The information contained there has potential to help raise awareness and understanding for individuals living with Lupus and those who love them.
Source(s):
Personal experience
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October 08, 2009 01:25 PM
Some acquaintances I've run into on the internet may have lupus (you're one of them!), but I don't believe I know anyone in my personal life that has been diagnosed. I'm obviously not happy that you have lupus, but I'm glad that you have a correct diagnosis and can receive the proper treatment.
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October 08, 2009 07:41 PM
The first two people I ever knew with lupus were my daughter-in-law Andrea and her sister Ariana, both in their late 20's. In them, I saw the extremes of what the disease can do. Ariana did not take care of herself. When her boyfriend moved out, she became severely depressed and unable to work. Even her beautiful baby daughter could not help Ariana to fight this disease. She was hospitalized and died after a few weeks of multiple organ failure. Her father arrived at her bedside from Colombia ten minutes before she passed away. Andrea takes care of herself. Right now, she only takes a small dose of prednisone each night. She has occasional symptoms such as a rash or swollen joints, but I have never heard her complain. She takes care of our 1-year old granddaughter and works as a CNA. She almost never misses work. Due to extreme stress in her life, Andrea's lupus recently because active again. She woke up one morning and her face was so swollen that she was unrecognizable. She could hardly walk. Thinking of Ariana, we feared that it might be the beginning of a severe attack. After megadoses of prednisone and strong orders from the doctor to remove as much stress as possible, Andrea's symptoms subsided and she is now doing great. I will tell her about the beef issue.
It must be so difficult living with a disease that is so unpredictable. To Michelle and others living with lupus, sincerest wishes for many good days to come.
Source(s):
Personal experience
Tags: lupus, prednisone
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Helpful: michelleldevon
Tip carlaneeleyfreitag for this answer
October 08, 2009 08:35 PM
I don't have lupus... nore have I ever known someone. So this really isn't an answer, but an FYI you can tell your buddies with lupus. People will pay you for your antibodies. If you call up a plasma donation center and ask them about it they should give you more information. I've seen a list for different antibodies they pay for per donation at once center, and lupus was somewhere in the 200-500 dollar range. Not bad for an hour of your time. I'm not sure how often they let you come in, but, if you do the twice a week plan... you can get 1600+ a month.
Source(s):
http://www.biolynk.com/lupus_landing.html
Tags: plasmapheresis, lupus
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Helpful: michelleldevon
Tip thechadwick for this answer
October 09, 2009 12:10 AM
Hi Michy! Lupus is a notoriously painful disease.
A few years ago I worked as an injury claims adjuster for Farmers Insurance. Our insured caused a car accident that injured a woman who had Lupus. She was not badly injured. She just had a sore neck and back. Most of those claims only pay $1,000 - $5,000. Because the claimant had Lupus though, my supervisor approved a settlement of $13,000! Later, the claimant confessed to me that she planned to use this $13,000 settlement to pay for hip surgery - for her dog!
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October 09, 2009 03:06 AM
A friend of mine at church has it. She has good days and bad days. She has a terrific perspective on it. Every day, she figures, is a day she might not have had. So whatever happens has got to be good in some way: even days where she just hurts so much, she has kids and grandkids (young grandma) who delight her; people she can help in some way. For about 5 years, her lupus was pretty much in remission. Unfortunately, the area where we live is terrible for allergies, and apparently seems to set off lupus, too. When they lived in Alaska she was in remission. Much as I like having her around, I really think she should try moving back to see if she improves, since she only lived here until spring the first year before her lupus resurfaced. When she went back for a month last year, her symptoms eased greatly. I guess there must be a reason like her husband's job preventing them from moving back.
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October 11, 2009 03:40 AM
My great aunt on my mother's side of the family had lupus. It took her life at 62 years of age. I have MS and mine is quite aggressive and progressive so I can relate to how you feel. My doctors are surprised I can still walk, but they don't feel I will be walking much longer. I do use a wheelchair often, but I can thankful I don't yet need it 24/7. My MS causes severe pain, temporary blindness, temporary paralysis, bowel and bladder problems (very embarrassing ones), stuttering, intense tremors, acute shortness of breath, and severe episodes of numbness, tingling and weakness that cause me to fall. Two years ago one of these episodes let to a broken ankle, a dislocated shoulder and sixteen stitches because it caused me to fall down the stairs. My MS causes me to experience more than 20 symptoms daily and when I have relapses it is an automatic 1-2 weeks in the hospital where I am fed through an IV and can barely hold my head up. I have major issues with memory too. I often have to look at my driver's license in order to remember my own birthday. My aunt who had lupus was in just as bad a shape as I am in, worse in some aspects. I told my MS story so that I could try and paint a clearer picture of what she went through. She was a fighter too. She fought this horrible disease for 40 years. She would often forget simple things like her age or what state she lives in. She was constantly on oxygen for breathing problems, she was forced to stay in a wheelchair, she had to wear adult diapers due to bladder and bowel incontinence, she lost all of her hair, by age 50 she only weighed 97 pounds (she was 5'9), she had horrible skin lesions that would get really bad if she was in the sun for even a few minutes, when she was cold her fingers would be as blue as a crayon.
Eventually, kidney failure took her life. She fought to the last minute though. If it wasn't for her I think I would have given in to my MS years ago. But, her strength kept me motivated to fight my MS everyday. I'm not winning by a long shot, but I fight my MS with everything I have left. She never gave up and neither will I.
I know diseases like lupus and MS take so much out of us. Many of us with these horrible diseases also have other health problems. I personally have 5 additional progressive diseases that are not curable. Well, actually one will be cured once I have my hysterectomy.
It is hard to stay strong and keep fighting, but you, I and the millions of others with these diseases can do it. When I am having a really bad day I tell myself "before I die there will be a cure for MS" and this helps me through. I hope that a cure for lupus is found too and really soon. I don't know if these cures will exist before it's our time to go, but that hope helps me to keep fighting.
My aunt always told me "this disease will never defeat me unless I let it". I have that quote on my computer monitor and look at it everyday and it helps me to stay strong and fight the fight.
Source(s):
Personal Experience
Tags: lupus, autoimmune, ms
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Helpful: michelleldevon
Tip r_elizabeth_c_kitchen for this answerAnswer this Question
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that part you said here that makes me shudder is cheeses. I am a cheese nut! I eat tons of cheese!
I don't know why I never noticed the correlation, but... I do like some goat cheeses, and I'm up for trying more of them, so maybe I can stop my cow cheeses and go for goat cheeses instead and see if that helps.
I'm not big on margarine or butter, but I do use olive oil for cooking a lot, so that one isn't going to be a problem for me.
We're trying really hard to get a diet that works for me, because I can tell that some things bother me and make me flare more than others. Currently, I'm not in a wheelchair full time, but on a bad day, I either use the wheelchair or I don't get out of bed. There was a time I wouldn't get out of bed. Now, I'm learning not to hate the chair. If I can be rid of the chair though, all the better.
thank you for sharing this with me. I think it might have just solidified my plan to stop eating cow meat that I had already been tossing around anyway. I really appreciate you sharing this!
Buffalo are also in the bovine family, so you can't eat anything from buffalo either, which is sad, because they are much better beast to rasie in terms of their impact on the environment compared to cows, so its gaining in popularity among those who are carniviors but think green, howevr... it's a bovine, so you can't eat anything from buffalo either.
On one hand it is, to humans, so delicious that once people develop a taste for it, there's nothing like it... there's nothing like beef fat in gravy, or butter in soup and on bread, or sweat cream on cerial... or for making cheezes... let's not even talk about the cheezes...
Yet there's something about it that is just not right for our physiologies. It's the number one cofactor in male prostate cancer.
In countries like Japan where very little beef fat is consumed, prostate cancer is almost unknown, but in nations that eat a lot of beef, the odds of a male developing prostate cancer at some point in his life is basically 100%, such that the issue is not whether he'll get it, but how bad.
So @michelleldevon, if there's a guy in your life, there's *no* reason for him to *not* get with the program...