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Old 01-22-2011, 05:44 PM   #1  
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Default Former fat chick (now size 10) with lupus says hello.

Hey you all.... my name is Molly, I live in Colorado, and though I'm a healthy weight now I'm still trying to lose a bit more.

I'm 31 years old and I have a severe case of systemic lupus. It's so bad I'm usually in the hospital 3 or 4 times a year, on high dose prednisone and Lyrica. But I've learned a lot of workarounds for the extra hunger and am proud to fit into my regular size clothes nowdays. I'd love to be even a little thinner but am content to just try and stay healthy.
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Old 01-22-2011, 05:48 PM   #2  
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Hi

I was diagnosed with lupus about a year ago, but I think I have had it for 20+ years.

I fear the flare ups because Prednisone is such a nasty drug. My side effects are pretty severe, including extreme hunger and thirst...which leads to weigh gain, as you know.

Welcome! And you go girl with your weighloss. Lupus and weighloss takes a LOT of determination!!
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Old 01-22-2011, 05:50 PM   #3  
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Another thought...have you been tested for food allergies? -- I was finally diagnosed with celiac -- another autoimmune -- and once I omitted all grain, I have not had a lupus attack. Almost two months now

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Old 01-22-2011, 06:14 PM   #4  
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Hi, Sum, thanks for the welcome.

I have no food allergies.

I have a very severe case of lupus, possibly terminal. It has needed chemotherapy to manage it in the past. I was on Cytoxin and lost my hair.

I've had multiple instances of pulmonary embolism, and I went half blind in 2009 due to a blood clot in the arteries of my eye. I will eventually go fully blind due to these retinal clots, which the doctors say will recur. I also have what is termed "anticardiolipenantibody syndrome," which means blood clots keep recurring due to the nature of my blood.

Here's some of the fun stuff I've been through:

I once lost half the blood in my body due to drug interation/over anti-coagulation. I had a hemmorhage, and needed 8 transfusions as a result. I have about 2 staph infections a year, which usually require hospitalization to treat. I also had a case of hemolytic anemia that ended me in the ICU for 2 months. In addition to this I have fibromyalgia and a severe case of Raynauld's disease (so bad that I need to move to a warm climate or I risk amputation of my fingers). My prognosis is not good. The hospital is kind of a second home to me; I always keep a bag packed and ready to go there. My sort of lupus is not the kind which can be cured by eating differently, although I know more mild cases can be greatly improved that way. I appreciate your kind thoughts and good intentions, though.

I do eat as healthy and as natural foods as I can, which is difficult when you are on food stamps (as I am.) I just buy a lot of fruit and vegetables and lean meats, fat free milk, etc. I have to eat like I'm dieting all the time because I can't exercise without risking some major damage to my body; I was seeing a physical therapist but he came to the conclusion that the best thing I can do is rest. When my body is stressed under exercise, the lupus flares and attacks something in my body.

So my 165 pound weight loss was done without any major exercise, since I'm too weak and medically unstable to exercise and I'm in a wheelchair most of the time. I'm proud of it, but frustrated sometimes- for example, a lot of hospitals serve you unhealthy food when you're hospitalized there! I've had many times when I go into the hospital and they send me up a very fatty, unhealthy diet, with high fructose corn syrup in the foods.

I joined this forum with the hopes that I can help other people who are on prednisone and other drugs which increase hunger find a way to help manage it- and to help avoid the horrible "moon face" that prednisone gives.

Also, as sad as it is, doctors often treat you much better and take your medical case more seriously if you are thin. It is messed up, but true. I used to hear "you're just not trying" when I was overweight; now that I am thin, it didn't make my lupus any better. In fact, it got worse once I lost the weight. But the doctors never blame it on *me* now. Another thing i'd love to accomplish is to help change doctors' perceptions of patients who are overweight being lazy. We aren't... and I wasn't, even back when I was 350 lbs. I was willing to work, I just didn't know how.

I've been at my current weight for 4 full years now, and very proud of it. Hoping to help others while I'm here. Please feel free to add me on messenger or email if you like or if I can help with suggestions.

Last edited by ScarletHester; 01-22-2011 at 06:15 PM. Reason: I misspelled the word "possibly."
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Old 01-22-2011, 06:24 PM   #5  
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I am so sorry! -- You are an inspiration!!

Is a sun a trigger to you? I have really difficult time with sun.
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Old 01-22-2011, 06:36 PM   #6  
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Nope, I'm lucky, sun doesn't cause flares in me.

However the good news for you is, if sun causes your flares, you probably have skin oriented lupus. The best rheumatologist I ever saw explained it to me like this:

Think of lupus like a naughty child, it likes to throw tantrums in the body and attack certain things. Well it normally attacks one of three things, when it throws a tantrum:

1. Skin.
2. Blood.
3. Organs (kidneys, heart, etc.)

Most forms of lupus will stick to attacking one thing over and over again, it's their preferred method of attack. And while being allergic to the sun isn't fun or good, at least it means your lupus is likely to stick to attacking that particular part and will leave the other parts alone.

I got unlucky in that my lupus loves to attack my blood. It does it all the time. But I AM lucky in that is mostly leaves my organs alone- it once did a little kidney damage, but not much. It likes throwing its tantrums in my blood.
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Old 01-22-2011, 10:50 PM   #7  
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Hi ScarletHester....

I don't know much about Lupus at all .... but you are very inspirational the way you have overcome these huge obstacles to lose the weight ...

Thanks for sharing

Helen
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