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May is Lupus Awareness Month

 
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Ming View Drop Down
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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 8:07pm
i know theyre awful maysay Hug its already at her kidneys.. Unhappy i think a car accident triggered it. my mom used to cook dinner at 3am lol.. and she has horrible insomnia. she was mean

im on some now for my allergies... gained 12lbs in 2 wks Pinch and i have horrible insomnia. i had surgery a few years ago and i was scared id see symptoms... i had an accident a few days ago and im paranoid again.. any little change can set something off
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SamoneLenior Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 8:09pm

thanks for sharing Maysay
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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 8:10pm
Originally posted by SoutherNtellect SoutherNtellect wrote:

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?


my mom walks as if her lungs arent about to explode... keeping up appearances smh... i wish she'd have a seat
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Post Options Post Options   Thanks (1) Thanks(1)   Quote NadiaPost Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 8:15pm
Stay blessed, positive and healthy Maysay. I only know two people with lupus. One has a very awesome spirit and doesn't let it get her down. The other seems like she just feels defeated with life but she just keeps on going but some days her overalllight seems dim at times.
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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 8:56pm
Originally posted by SoutherNtellect SoutherNtellect wrote:

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?


It can be both types of pain depending on what I'm dealing with at the time. Sometimes it's like my skin hurts...like I can't let people touch me. Sometimes it's just my joints. Sometimes it's everything.

I don't know that I cope very well. And honestly sometimes I just go off on people. Because people don't get it. It's not their fault, but they just don't get it. Like, in the last 3 weeks I left the house 4 times, 3 to go to the grocery store and once to go to dinner. And yet folks will still be like well why don't you xyz? Like girl, I'm gonna need you to not talk to me because believe me I want to be out living life.

I went off on my mom today. I really didn't mean to but I couldn't help it because I'm sick and sometimes I can't take hearing about people's mundane "problems". I can't breathe, I can't work, I can't take care of myself, I have no control over anything, f*ck I care about my sister's dog needing a baby sitter.

But I really try not to be like that. Because it's not right and it's really not who I am. I am alive. Considering everything, I am blessed. Nobody is going to let me be homeless or starve. That is A LOT to be happy about. Really and truly.
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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 9:01pm
Originally posted by Ming Ming wrote:

i know theyre awful maysay Hug its already at her kidneys.. Unhappy i think a car accident triggered it. my mom used to cook dinner at 3am lol.. and she has horrible insomnia. she was mean

im on some now for my allergies... gained 12lbs in 2 wks Pinch and i have horrible insomnia. i had surgery a few years ago and i was scared id see symptoms... i had an accident a few days ago and im paranoid again.. any little change can set something off


The bold is so me omg lol. Like I will be STARVING at 3 in the morning. Will cook a whole breakfast of bacon, eggs, hash browns, waffles...like a crazy person. And will be on the phone with a friend from the east coast just running my mouth and forget what I'm talking about because my brain can't catch up with my lips.

And the weight gain is REAL. The steroids change the way your body metabolizes carbs (as in, just stores right away instead of even trying to use them as energy). Plus the swelling it causes...lawd. The puffy face ain't no joke.

Though, when I'm on high doses that's when my room is spotless...I stay cleaning out drawers and closets and errythang in the middle of the night.
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