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kannmo

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 #1 
I'm having a hard time finding resources on how to help a family member with Lupus. Any recommendations? 
IrishLass

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 #2 
That you would go out of your way to ask leads me to believe that you are already a source of comfort and support for your family member. He/she is lucky to have you.

I have one suggestion: learn about lupus. What it is, what it does, and how it affects the people who have it. It affects different people in different ways. The more you learn about how it affects your loved one the better you'll be able to support him/her.

And good for you for wanting to learn!
Cakelady

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 #3 
There are some pretty good books out there. I can't remember the names of them but I am sure someone will come around and post the information for you.

In my experience it's best if you keep a note book so you can write down questions and concerns so you don't forget anything. Also taking someone with you to each appointment is a good idea.

Good luck

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Raglet

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 #4 
talk to them and ask them how best to help them. My family just helped me convert my bathroom into a fully wheelchair accessible wet room. Our needs are very unique and your family member with lupus is the best source of information as to how to help meet their unique needs. Good question to ask though - all the best.
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Cakelady

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 #5 
Ken's looking into bars in the bathroom for me


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LupieD

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 #6 
These 6 simple words mean most to me. "What can I do to help". There may be nothing I need at the moment, but just the offer means everything.

I can tell you what makes me crazy about my mother, who I know means well, but her overly aggressive behavior and lack of real understanding of how Lupus affects me puts a strain on our relationship. She will say things like "You have to do this" our "what you NEED to do is this". Those are not, in my opinion, words of advice. And coming from someone who has no idea what my daily struggles are is frustrating.

Guilt is something many of us struggle with. I am forever feeling guilty that I can't meet up with friends and/or family. Or when I do schedule a lunch date or even a holiday get together with family, I often have to cancel. Some understand. Some don't. One of my favorite quotes is "Those who matter don't mind and those who mind don't matter". And while I know this, it's still tough. Eventually, most friends stop trying, which makes me sad but I get it.

To your question, which I'm sorry for deviating away from, try these to start:

* Keep in close contact, even if just by phone. We often feel isolated and lonely.

* Ask what you can do to help. Just knowing you're willing means the world.

* Include your family member in planned get togethers. Let them know you'd love to see them but you understand if they need to cancel, even the morning of the event. We don't typically know what our bodies will allow us to do until we open our eyes in the morning (for those lucky enough to sleep the night before)

* Be careful about making assumptions. Many of us struggle from a special kind of brain fog from time to time. My mom always accuses me of taking too many pain pills. (I haven't had ANY since Dec. but she chooses not to believe this, even after hearing it from the doctor).

* LISTEN without telling your family member to "stop wearing a hair coat" , whatever that means. None of us like to complain or burden others with our issues, so when we do talk about it, it's likely because we've held it in so long we're about to burst.

As Irishlass said, the mere fact that you're reaching out to better understand how to help your loved one speaks volumes. Good luck to you and please keep in touch.

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wings65

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 #7 
@LupieD: In my opinion, you've said it all - covered all the bases. Very good recommendations, worthy of printing out and passing on.

If you ever find out what "stop wearing a hair coat" means, share that will ya.
LupieD

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 #8 
Quote:
Originally Posted by wings65
If you ever find out what "stop wearing a hair coat" means, share that will ya.


Ha ha! I definitely will. My mom said it so I'm sure it's something less than positive, bless her heart.

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Marthmaymoo

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 #9 
LupieD?

Very well said.
LupieD

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 #10 
Quote:
Originally Posted by Marthmaymoo
LupieD?

Very well said.

Grazie. I was concerned that it was too long and "wordy". Sometimes I go on tangents.
[c05111]

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DeBartolo

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 #11 
"I was concerned that it was too long and "wordy"."


fear not.
we had a member long ago who was in the habit of posting 7,000-10,000 word essays.




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wings65

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 #12 
@DeBartolo - Oh yes. I referred to those posts as "novellas." I simply skipped over them. Couldn't read them. Wonder whatever happened to her/him?
LupieD

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 #13 
Quote:
Originally Posted by DeBartolo
"I was concerned that it was too long and "wordy"."


fear not.
we had a member long ago who was in the habit of posting 7,000-10,000 word essays.





I remember.

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zest

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 #14 
Oh, please do excuse me.
Hopefully, you chose to skip over my cries but also appreciate my attempts.
Hugs and big thanks.
God bless you all
Zest









------------the declaimer here re: my frailties
LupieD

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 #15 
Quote:
Originally Posted by zest
Oh, please do excuse me.
Hopefully, you chose to skip over my cries but also appreciate my attempts.
Hugs and big thanks.
God bless you all
Zest









------------the declaimer here re: my frailties


It was not you I was thinking of. No need to apologize. TRUST ME! The posts I'm recalling were short novels. I did read some, but like Wings65, I learned to just skip over them. I'm sure she meant well but I just don't have the attention span to read that much in one sitting. I need potty breaks about every 5,000 words.

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