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Cakelady

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 #16 
First I am not trying to down play what anyone here is going through but we got a call at 3 am from my brother in law he has been getting chemo and radiation. So I quickly showered and went to the hospital ER by his house. It's an ER I am not familiar with. I spent most of the day there only to fight traffic to get to the bank the grocery store and the pharmacy. I thought to keep dinner quick and fast since I didn't think I would be awake much longer. Hamburgers on the grill and tator tots in the oven. Hubby burned the tots. I fell asleep between 6-7 pm. And now it's 4:34 am and I am only up because of the animals but I feel like I have been hit by a truck. The minute hubby gets up I am going back to bed

And my brother in law was doing good with his cancer treatment but OMG the radiation which is on his neck has turned his neck black he can't swallow not even water he's lost 70lbs in 2 weeks because he can't drink or eat and doesn't want a feeding tube. I almost didn't recognize him when I saw him. We spent a very nice day over 12 hours in the ER


Ok I am done complaining

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Cakelady

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 #17 
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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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Mr. Bun

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 #18 
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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 #19 
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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 #20 
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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 #21 
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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"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Dolphin

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 #22 

Hi stomasiac, the bio freeze sounds interesting ! For the biofreeze do u rub it in or does it stay there ? I was sleeping with ice on the feet but it would get all over stuff and I would wake up in a pool lol and the ice was painfull.  If it doesn't dissolve into the skin I will probably have the same problem with the mess as it affects the entire top and bottom of my feet and hands.   Fortunetly, my anti anxiety med is working but it can't hurt to try something else.   

stmosaic

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 #23 
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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