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May is Lupus Awareness Month

 
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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 5:39pm
Originally posted by Alias_Avi Alias_Avi wrote:

OuchCry

I am so weak. I can't even read stuff like that without feeling nauseous let alone live through it



But it's so important to know about it because if someone you love is going through it you can encourage them to get to a doctor and hopefully get some help. That's the important thing.

Just asking the questions is doing such a great thing. Be proud of yourself!




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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 5:43pm
You know what's the funniest thing? A lot of places will have walks for lupus this month. Which, is a good thing.

But, one of the common symptoms is sun sensitivity. Like to the point of breaking out in hives or a rash, swelling up, and needing to recover for like 3 days in bed after being in sunlight for 10 mins.

And they'll have the walks outside. I'm always like, are y'all just trying to kill me? Lol. We need to have this walk in the gym or at night or something.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote PurplePhase Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 5:43pm
*hugs* Maysay. I hope you are feeling better soon.

my BIL is currently on the transplant list for kidney; lupus. He's been on the list for a few years now. His condition isn't bad enough to get him moved to top, but it's bad enough that he's been hospitalized several times. It's getting pretty hard on him after so many years. He was diagnosed around 20 yrs ago.
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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 5:49pm
Originally posted by sugabanana sugabanana wrote:

Awww MaysayHug. Thanks for educating me on this disorder. I never knew the extent of the disease. I just thought people were just fatigued and tired all day.  


Yeah, some people are. And some don't really have symptoms at all. Lupus can be so different for every individual.

And thanks for the love!
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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 5:51pm
Maysay is this disorder hereditary? Or does it just develop in people?
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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 5:51pm
Originally posted by PurplePhase PurplePhase wrote:

*hugs* Maysay. I hope you are feeling better soon.

my BIL is currently on the transplant list for kidney; lupus. He's been on the list for a few years now. His condition isn't bad enough to get him moved to top, but it's bad enough that he's been hospitalized several times. It's getting pretty hard on him after so many years. He was diagnosed around 20 yrs ago.


Well he sounds strong since he's made it this far so I hope his strength continues. I know it can be hard.

Probably the hardest part is the mental...a lot of times you can learn to bear the pain and inconvenience. But how do you stay positive when your dreams crumble? I don't have the answer to that.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote kerysdream7 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 5:56pm
thanks for sharing your story. Was it easy for the doctors to diagnose your condition?
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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 5:57pm
Originally posted by sugabanana sugabanana wrote:

Maysay is this disorder hereditary? Or does it just develop in people?


The research says it's not hereditary (as in, if your mom has it that doesn't mean you will). But it does seem to run in families.

There are a lot of autoimmune issues in my bio fam on my mom's side. Don't know dad's side. A lot of people went undiagnosed though so sometimes it's hard to tell.

Autoimmune issues are so common now (our environment has triggered some nasty stuff) so basically anyone can get it. But it's more common in women of color.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote PurplePhase Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:00pm
Originally posted by maysay1 maysay1 wrote:



Well he sounds strong since he's made it this far so I hope his strength continues. I know it can be hard.

Probably the hardest part is the mental...a lot of times you can learn to bear the pain and inconvenience. But how do you stay positive when your dreams crumble? I don't have the answer to that.


yes he is strong. It may have helped him that he was in excellent shape before he was diagnosed. This was one of the hardest parts for him when he started getting sick, not being able to be active anymore. He's had good periods, then he will be sick for months. Cry
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mzsophisticated Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:06pm
My mom has sjorgrens syndrome which can be a gateway to lupus and I think she said her endocrinologist said she is beginning to develop signs lupus. I have to be careful because I have Hashimoto's Thyroiditis which is an autoimmue thyroid condition
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