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About Me
my name is jean, im 47, i suffer with both discord and systemic lupus. let me say that every talk show, every doctor show has NEVER NEVER EVER talked about lupus. just like cancer, aids and ms it kills someone or just as many people. my days are long and painful! there are some days i don't even feel human because of all the damage lupus has caused. to save my life i was put on steriods(but even tho i'm alive, i sometimes, most of the time wish i wasn't)--steriods destoryed my looks-- my skin stretch in places till it started to burst and bleed, my teeth started crumbling in my mouth when i brushed that my doctor told me the only way to save any was to stop brushing. if i had a way to send you a picture of what my smile looks like then you would understand. i was unable to obtain a job, i don't go out in public unless i just have to. lupus destorys you, not all at once just slowly and it makes you ashamed to be alive. i'm losing my hair in great patches, the sun burns me and i try not to go out till it's dark or just as the sunn sets. i have days that if i put clothes on it feels like i'm being set on fire, the most of the time i just have pain that feels like it's inside my tissue, as if someone is sticking me with ice picks that were held in fire. i've suffered with this since the age of atleast 16, i miscarried 2 times because of it and the 2 children i did have were born when i was 8 months. while i do enjoy your show, because ther are helpful things on it, as i said, NO ONE NEVER NEVER EVER talks about lupus and what aKILLER it truely is!
My recent comments
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- To: constancej
his mother is to take him to peds today, wish i had transportation, i...
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- To: constancej
thanks,same to you. its my grandson, he's only 8 months old and i fee...
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- To: constancej
sleeptech how are you doing? you too horsecrazy...hope you 2 ar...
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- To: constancej
to any mothers and nanas taking care of their children, what do you d...








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I agree that a show about Lupus would be extremely helpful. I have had some persistent problems for about 5 years and in the last few years it was thought to be from a Splenic Artery Aneurysm which is also what my father died of - but while in the process of all the Xrays, MRI's, and labs from the aneurysm, they told me they found that Lupus is suspected. I'm told it takes YEARS to get a full diagnosis of Lupus. I am a teacher and have been unable to work for almost a year now. The worst thing for me has been the EXTREME fatigue and CONSTANT pain in defferent areas on my body. I don't know anyone or anyone in my family (near or distant relatives) who has Lupus. It would be great to have a show that talks about this disease to enlighten myself and others. I feel like I am a person with a contagious disease or something. When you tell some people about your disease, they actually start backing away from you. A show about Lupus could help people to understand about this disease. I even had my own son ask me if it was something that he could "catch" from me. I feel like my entire life has been engulfed and taken over with this disease. I have become only a shell of what I used to be. There is not a day that goes by that I ever feel like my lucky-go-self anymore. I always feel like I feel sick anymore but it makes me feel worse because people don't understand.
Hope He gets to the doctor today, buttomorrow should be o.k. Thanks for letting me know, I Care! Kathy
his mother is to take him to peds today, wish i had transportation, i would've taken him and maybe by now he would feel better. if she isn't able to take him today i'm going to keep her car and take him tomorrow. in 4 days he has only had 2 bowel movements.
What does his pediatrician say? Your grandson is a llittle young to have this probllem I think.
thanks,same to you. its my grandson, he's only 8 months old and i feel for him.
Hi Constance J, Am doing o.k. thanks for asking. Happy Thanksgiving to you and your family. Don't know what to say with your child w/ constipation. Wish I could help.
sleeptech how are you doing? you too horsecrazy...hope you 2 are doing good.
to any mothers and nanas taking care of their children, what do you do for a 8 month old boy thats constipated?
So sorry you have that diseaase. I have something similar to M.S. No family nearby. Been disabled since 1982. My friends were a bigger help to me than family at that time. I have learned to depend only on me.I've had peope come up to me and say some thing like I need that motorized w/c more than you do. Now I go out in funny t shirts so peole read them and laugh at them and forget what they were going to tell me. It works like a charm! I live in Florida. they make them for dog lovers, cat lovers and horse lovers. I'll be 60 next month. Wish I could be of more help to you. MY prayers are with you.
They did speak briefly about Lupus and kinda the way your own immune system attacks your body. That is more then I can say for most shows. Your story sounds kinda like mine, check my profile if you'd like, so I know how you feel. I too am losing my teeth, I can't go out in the sun, and now it's doing something to my heart, my latest updat is in a blog, that you can find from my profile if you'd like. My hair is currently falling out, and I can't remember what it's like to not be having a flare-up. Hope to talk with you again sometime.
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