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Cakelady

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 #16 
One last thing we suffer everyday with lupus and we learn to live wit it. Not everyone can do that and I might say we are some very tough women. Sure we sometimes hit our breaking point and let me tell you I was pretty p i s s e d when I found hubby had burned the tator tots but the minute we got the call from my brother in law I bounced up took a quick shower and was out the door with my go bag which contained meds, a charger spare clothes and a book. All lupus patients should keep one because you never know when you are going to have to go to the ER I also have life savors a brush pony tail holders and a few other items like a bottle of water.

Here's my point I will be dead most of today but when we need to we push our tiredness down and do what needs to be down we should all be proud of ourselves. Even coming on here everyday to help others can drain you but we still do it

My only regret was not being able to meet up with shutterbug. But my brother in law is alone is daughter who has not been there for any of his treatments lives 6 hours away so I was kinda of the only person he had to call and he had to set his pride aside to mske that call

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Mr. Bun

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 #17 
CupCake?

you are not complaining....you are just letting us in.....on a glimpse of your life & the lives of others.....who are close to you.


Cakelady

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 #18 
Right now life really s u c k s
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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
stmosaic

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 #19 
Dolphin,

The erythromelgia (red burning in extremetities) you mentioned, I get something similar when I get too warm as I'm going to sleep at night. I found that Bio-Freeze spray on the effected area (for me it's the hips and thighs) really seems to help. You might give it a try.
Baker1

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 #20 
I agree with Cakelady, right now life sucks. I hate to say this but I was better off when I was on methotrexate. I have been almost constantly sick since I switched to Cellcept. I know part of it has been this crazy weather that we've all are experiencing, but something has to change. I'm really hoping that my rheumy puts me on the Benlysta self injection. I felt good during the last 6 months of the clinical trial when I was actually getting it and not the plecbo that I got during the first 12 months. I'll see what she says at the end of July.
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stmosaic

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 #21 
Dolphin,

If you use the spray, it absorbs in fairly quickly and doesn't really cause a mess. No need to rub it in. You can use the roll on or the rub, but they don't absorb as quickly. I use the spray, stand in front of my fan for about 30 secs and then lay down on either side I've sprayed.
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