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May is Lupus Awareness Month

 
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sugabanana View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote sugabanana Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:07pm
So what can you do to prevent this? It just creeps up on you like a thief in the night?? 
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maysay1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maysay1 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:16pm
Originally posted by sugabanana sugabanana wrote:

So what can you do to prevent this? It just creeps up on you like a thief in the night?? 


Unfortunately, I don't think there's really any way to prevent it.

I mean, it's always good to live a healthy life. That certainly helps if you get diagnosed. But there's no one definition of "healthy". And I know some people with lupus who smoke a pack a day, drink like a fish, and survive on fast food, soda, and like kraft mac n cheese...and they have no symptoms, long flowing hair, and can work and exercise and live life. There's just no guarantee.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote maysay1 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:19pm
Originally posted by kerysdream7 kerysdream7 wrote:

thanks for sharing your story. Was it easy for the doctors to diagnose your condition?


Luckily for me, it was easy. I was a "typical" case. 20 yrs old, black, under a bunch of stress, sleeping 16-20 hours a day, and so much pain in my hands that I couldn't even pick up my purse. They did blood tests and I had a positive ANA and the other markers.

For some people it's incredibly hard to get diagnosed because the symptoms mimic a lot of different things plus you can have a negative ANA so the docs don't think it's lupus.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Benni Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:41pm
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Ming Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:50pm
my friend has lupus and doesnt take her steroids. she complains of leg pain all the time. i keep telling her not to play like that.. shes on 10mg, my mom was on at least 10x that for something similar when i was in hs... maybe 20mg a day now. good luck maysay
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Post Options Post Options   Thanks (2) Thanks(2)   Quote SoutherNtellect Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:50pm
thanks for sharing
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Post Options Post Options   Thanks (1) Thanks(1)   Quote india100 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:22pm
Originally posted by maysay1 maysay1 wrote:

Originally posted by DiorShowGirl DiorShowGirl wrote:

Originally posted by maysay1 maysay1 wrote:

Considering recent events and all...please do what you can to support awareness and those in your life who might be afflicted.

Check out www.lupus.org.

If you have questions, feel free to ask. I've been diagnosed for 8 years now.


so u have your good days and bad days MaySay1?  Hug


Basically.

I was fine for the first few years. I was diagnosed my junior year of college (had surgery the summer before and then started an intense school/internship program in DC that fall).  I was basically just really tired (slept like 16-20 hours a day) and in pain until I got diagnosed. Got meds and was fine for a while.

The last 3 years have been...not good. I've had pleurisy (fluid/inflammation in lungs), pericarditis (inflamed heart sac), severe hives, fatigue and pain. In the last year I've developed discoid lupus (lesions all over my skin), nephritis (kidney disease), started this year with a severe flu, then had shingles, and now on my second round of antibiotics for pneumonia.

And since the nephritis is getting worse I will probably have to do a round of chemo for it soon.

So currently...not so many good days. But I'm alive so...
I hope you can avoid the chemo . My sister found a doctor that help her without the treatments . I take COQ10 and other herbs that seem to help  . I am borderline with Fibromylagia . Good luck sweetheart.  Hug 
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maysay1 View Drop Down
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Post Options Post Options   Thanks (2) Thanks(2)   Quote maysay1 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:27pm
Originally posted by Ming Ming wrote:

my friend has lupus and doesnt take her steroids. she complains of leg pain all the time. i keep telling her not to play like that.. shes on 10mg, my mom was on at least 10x that for something similar when i was in hs... maybe 20mg a day now. good luck maysay


Steroids suck. Prednisone turns me into an insomniac irritated crazy monster. It's ridiculous.

But if she doesn't take it the inflammation will continue to run rampant in her body and instead of just attacking her legs it will start taking a toll on her organs.

Just encourage her to take the meds. Psychologically it's difficult. But the consequences can be so much worse. She doesn't want to end up where I am or worse. Just love her up and be her encouragement.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SoutherNtellect Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:36pm
is it a localized or diffuse pain?

how do you cope with the pain and explain to others who don't understand that somedays you just physically can't do stuff, without them thinking you're making excuses?
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Post Options Post Options   Thanks (1) Thanks(1)   Quote DiorShowGirl Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 7:47pm
Originally posted by maysay1 maysay1 wrote:

Originally posted by DiorShowGirl DiorShowGirl wrote:

Originally posted by maysay1 maysay1 wrote:

Considering recent events and all...please do what you can to support awareness and those in your life who might be afflicted.

Check out www.lupus.org.

If you have questions, feel free to ask. I've been diagnosed for 8 years now.


so u have your good days and bad days MaySay1?  Hug


Basically.

I was fine for the first few years. I was diagnosed my junior year of college (had surgery the summer before and then started an intense school/internship program in DC that fall).  I was basically just really tired (slept like 16-20 hours a day) and in pain until I got diagnosed. Got meds and was fine for a while.

The last 3 years have been...not good. I've had pleurisy (fluid/inflammation in lungs), pericarditis (inflamed heart sac), severe hives, fatigue and pain. In the last year I've developed discoid lupus (lesions all over my skin), nephritis (kidney disease), started this year with a severe flu, then had shingles, and now on my second round of antibiotics for pneumonia.

And since the nephritis is getting worse I will probably have to do a round of chemo for it soon.

So currently...not so many good days. But I'm alive so...



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