Unwanted Advice

Oh bless your heart! :wink: (((hugs)))




cassie40 said:

I must have married your husbands twin!

Cassie

I agree Ann A, we should publish our stories and information we found out in our battles with Lupus. Kind of a Chicken Soup for Lupus Patients... Or Your diagnosed now what... Some kind of title.

I really think we can do this.

There are two things I have used to help describe what this illness is like. One is the spoon theory and that is something people can start to get their head around. The other works best with women who have given birth and there may be another analogy available for other people. This came from my daughter as I described the spoon theory to her. She said, "It's something like being 8 months pregnant forever." At the time she wasn't far from that experience. That said, when someone is being insensitive it hurts and it is unfair.

So happy now... I had a horrible bout of nausea then I started drinking warm water and within 10 minutes, my stomach calmed down and nausea went away. Wonder if this is a shared experience treatment for nausea.

No.... Bless our hearts ;0)

SweetNovember said:

Oh bless your heart! ;) (((hugs)))


cassie40 said:

I must have married your husbands twin!

Cassie


I heard this in meetings so many times - I would have never imagined I would be applying it to my own disease. But we have to give the power to our higher power and his will, not ours. As a matter of fact, when I was diagnosed, I was very upset, but the next thing I did was go to a meeting that night, and we talked about hardships as the pathway to peace.


Ann A. said:

"Take what you can use and leave the rest."

The saying above is one of the many slogans from 12 Step Programs that have helped me to survive with lupus for the past 45 years. Of course, I had never heard the slogan until the 1970s when I worked evaluating the effectiveness of substance abuse interventions. But it is how I try to deal with advice, especially from people that I know mean well. Every now and then, even the most unlikely people say something that I find useful. So, I try very hard to pay attention to that little bit and to just ignore the rest.

Oh I love that! I’m in!



Unshoreandscared said:

I agree Ann A, we should publish our stories and information we found out in our battles with Lupus. Kind of a Chicken Soup for Lupus Patients... Or Your diagnosed now what... Some kind of title.

I really think we can do this.

Oh, the pregnancy analogy is a good one!



Marion said:

There are two things I have used to help describe what this illness is like. One is the spoon theory and that is something people can start to get their head around. The other works best with women who have given birth and there may be another analogy available for other people. This came from my daughter as I described the spoon theory to her. She said, "It's something like being 8 months pregnant forever." At the time she wasn't far from that experience. That said, when someone is being insensitive it hurts and it is unfair.

Aww, yay! Glad you’re feeling better! Nausea is the worst…



Unshoreandscared said:

So happy now... I had a horrible bout of nausea then I started drinking warm water and within 10 minutes, my stomach calmed down and nausea went away. Wonder if this is a shared experience treatment for nausea.

When I was married, my exhusband used to say things in an attempt to help with what I said or how I felt. If I were worried about something, he would say, "Dont' worry, it will be allright," If I was tired and layed down on the couch afterwork, his responese would be that I "You need exercise, you'll get fat doing that." The man tipped the scales at 40 pounds overweight.

I get the point he was trying to help me. However, these responses minimized what I was experiencing. They're kind of rhetorical responses and not empathetic at all. People with lupus and other autoimmune diseases experience the extreme of tired, pain, exhaustion, etc. The advisors need to be educated.

Now days, when I get advice such as this, I politely refer them to lupus websites--this one and the Lupus Foundation. The next time I see them they usually ask how I'm doing. This I love. It shows that they really are interested in me.

Hope this helps.

That sounds a lot like my husband… I realize that maybe he is scared for me, in denial, trying to help, etc, however, I would prefer it if he just asked how I was feeling and said “I’m sorry” and move on. I don’t require pity and I don’t want him to “fix” me because I know he can’t. I’d prefer to call a spade a spade and get on with the day.
I think I may start referring people to the Lupus Foundation! Great idea!



USAGURL said:

When I was married, my exhusband used to say things in an attempt to help with what I said or how I felt. If I were worried about something, he would say, "Dont' worry, it will be allright," If I was tired and layed down on the couch afterwork, his responese would be that I "You need exercise, you'll get fat doing that." The man tipped the scales at 40 pounds overweight.

I get the point he was trying to help me. However, these responses minimized what I was experiencing. They're kind of rhetorical responses and not empathetic at all. People with lupus and other autoimmune diseases experience the extreme of tired, pain, exhaustion, etc. The advisors need to be educated.

Now days, when I get advice such as this, I politely refer them to lupus websites--this one and the Lupus Foundation. The next time I see them they usually ask how I'm doing. This I love. It shows that they really are interested in me.

Hope this helps.

Hey everyone!!

Feeling really good (physically) and now I am bored with staying in the house, escaping the heat wave in the south. I am taking charge of my life once again, and I thank everyone on this page and channel for helping me feel more optimistic about my health and about possible, (dare I say it ) marriage.

Thanks everyone, you are special to me.

That’s wonderful on all counts! <3<3
You are truly special as well!
((hugs))



Unshoreandscared said:

Hey everyone!!

Feeling really good (physically) and now I am bored with staying in the house, escaping the heat wave in the south. I am taking charge of my life once again, and I thank everyone on this page and channel for helping me feel more optimistic about my health and about possible, (dare I say it ) marriage.

Thanks everyone, you are special to me.

I'm so happy for you. You're a sweetheart and hope you continue to visit us! Kathy

Unshoreandscared said:

Hey everyone!!

Feeling really good (physically) and now I am bored with staying in the house, escaping the heat wave in the south. I am taking charge of my life once again, and I thank everyone on this page and channel for helping me feel more optimistic about my health and about possible, (dare I say it ) marriage.

Thanks everyone, you are special to me.

SweetNovember, did you ever calmly talk to your hubby and say these exact words that you wrote below? That's what was said that changed my husband around. The counselor and I told him that we don't expect him to fix me or do anything, just ask how I am, and believe me when I tell you how I'm feeling, and just say "I'm sorry". Not that he is apologizing for your health, but that he is sad that you are struggling.

SweetNovember said:

That sounds a lot like my husband... I realize that maybe he is scared for me, in denial, trying to help, etc, however, I would prefer it if he just asked how I was feeling and said "I'm sorry" and move on. I don't require pity and I don't want him to "fix" me because I know he can't. I'd prefer to call a spade a spade and get on with the day.
I think I may start referring people to the Lupus Foundation! Great idea!

I haven’t actually said that to him. I think that’s what I need to do.



Sheila W. said:

SweetNovember, did you ever calmly talk to your hubby and say these exact words that you wrote below? That's what was said that changed my husband around. The counselor and I told him that we don't expect him to fix me or do anything, just ask how I am, and believe me when I tell you how I'm feeling, and just say "I'm sorry". Not that he is apologizing for your health, but that he is sad that you are struggling.

SweetNovember said:

That sounds a lot like my husband... I realize that maybe he is scared for me, in denial, trying to help, etc, however, I would prefer it if he just asked how I was feeling and said "I'm sorry" and move on. I don't require pity and I don't want him to "fix" me because I know he can't. I'd prefer to call a spade a spade and get on with the day.
I think I may start referring people to the Lupus Foundation! Great idea!

Show the love SweetNovember, We are all here for you two. :)



SweetNovember said:

I haven't actually said that to him. I think that's what I need to do.



Sheila W. said:

SweetNovember, did you ever calmly talk to your hubby and say these exact words that you wrote below? That's what was said that changed my husband around. The counselor and I told him that we don't expect him to fix me or do anything, just ask how I am, and believe me when I tell you how I'm feeling, and just say "I'm sorry". Not that he is apologizing for your health, but that he is sad that you are struggling.

SweetNovember said:

That sounds a lot like my husband... I realize that maybe he is scared for me, in denial, trying to help, etc, however, I would prefer it if he just asked how I was feeling and said "I'm sorry" and move on. I don't require pity and I don't want him to "fix" me because I know he can't. I'd prefer to call a spade a spade and get on with the day.
I think I may start referring people to the Lupus Foundation! Great idea!

Hi Sweet November, It's going to be okay !!!! People aways have something to say when it's not them going through the pains and motions of an illness. I've gotten to the point of not listening to nagative comments that they say to me , because they don't know how it effect me or how it make me feel and the after affect. Just remain clam and don't stress about what people say . You know what is going on with you better than anyone, keep it moving is what i do !!! smile In time he will see that your pain and problems really are for real . Of course we are humans that really don't have the feelings that we should for one another ( people just don't care for one another anymore ) , which i think is crazie!!!! But that is how the world has changed in time. Keep going to the doctors and stay on top of your health , and hope that soon they will give you an answer to your sitation . Take care and talk with you later ...Beverly L.

I think we are married to the same guy. I feel exactly what you are saying.

Dr, ed bujold med dtr 828-■■■■■■■■. saved my live 3 times. he Rocks. i tried clev clinic, duke, ets. he is the one who diagoisisosd me/ Best of luck.

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