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Robinj

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 #16 
"I'm really starting to feel judged and discouraged by most of the responses that are going up"

I am sorry you feel that way. You are getting honest responses. No more, no less

"I would suggest you write down your goal
s. Is it to get better in your illness or continue your career. "

I think it will go hand in hand. One cannot continue without the benefit of some sort of control over the illness. 

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Sky

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 #17 
Your welcome. Yes it's extremely hard to define your goals. I think you answered your question. Recognizing the fact that you have a disease. Like Robin said, for many people, it's the new norm. We may resist but acceptance will only give the power to push through.
Cakelady

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 #18 
If you can go to school you can work. In the eyes of many and the SSA department this is this case. Is it right ? not always but it's the way it is. Sorry if that upsets you but it's the truth and I for one do not like to sugar coat anything and neither does Robin.

I am sorry you are alone. Look on the main LFA page for a LFA chapter nearest your. You might find some extra support there. Also they have other resources/help to get to and from doctors appointments etc. you might also want to go on twitter and contact lupus chat they might have other resources to help you.

Many of us here suffer and lot of us are on disability and a lot of us give our time and energy to this forum trying to help people. Where I live today it's supposed to be 100 degrees at 11 am it was already 90 and I do not have AC

Like I said earlier I wish you the best of luck

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Sky

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 #19 
Robin do not feel discouraged. You have a wealth of knowledge. When i feel like someone is argumentive, its not how/what their response is. it's the way I react to it. I'm only on this board to give information, experiences, and a listening ear. Everyone's experience and responses are different.. . You are always sharing so much new information on this board as well as others.
shutterbug

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 #20 
Sabrinabythesea- Robin is right in that you have to cover up to survive the walks you are taking. Sunblock isn't enough for most of us lupies. I am one of the extremely photosensitive people who can't go in the sun or under fluorescent lights. Everyday, regardless of weather, I have to have long pants, long sleeves, a wide brimmed hat and even a face mask. Yes it is hot. My only way of not becoming completely overheated is to wet the face mask so that it is cool on the back of my neck and face. Today I have an appointment with my eye doc and it is supposed to be about 110 where I have to go. There is no easy fix. Sun guard works great for cotton clothes. Find some nice breathable cotton, sunguard it and get a big hat. There are also UV parasols out there if you want to give one of those a try.
Cakelady

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 #21 
Shutterbug were you in my area
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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
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