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02-04-2008, 12:17 AM

Loneliness does hurt. And so does pain. I don't know why your significant other reacts that way. Can be a myriad of things? Pain everywhere, feeling ugly, and exhausted everyday..makes sex less desirable. Depression? The constant changing and adapting ourselves to the disease(s)

Chronic of anything, that is relentless creates moods. I have many and refer to myself as Sybil. Chronic makes me cry. A headache and mild joint pain, can make me sing and leap about because it is my normal. I can tolerate it. Get a new symptom and my day goes kaput, all is ruined till I regroup and pull myself up and out of the hole.

Is she in a never ending flare? Has she ever had remission? Does she keep the faith? Does she belong to a Lupus group? In she in constant stress? Do you talk about this situation all the time? Is she informed about her disease?

Sometime when in pain we lash out at the ones we love. Been together for a spell?

Have you tried just snuggling and cuddling? Laying next to her, reading a book outloud. There as so many way to be intimante that can be fulling. Massage her aches.

Have you two had an indepth, open conversation about Lupus, her and how it affects the relationship.

I feel just because I have the disease doesn't give me a pass to be neglectful or rude to my husband. Times we both can be neglecting. Times he rubs my skin..I whine and say just squeeze don't rub. Hug my head and not my arms. Lay by me and not wait on me. I read books to him.

Reality, in pain, feeling yucky, I can't imagine anyone wanting to be $exually intimate.

Being a man, usually they feel love when s*xual intimacy is involved. Women feel loved when one shows caring by the smallest act, the smallest gift. From painting toenails, washing the dishes to writing a love letter....Usually BIG isn't what it is about...it is what comes and is expressed from the heart.

When she says you want it all the time...all the time can literally mean everyday. I guess I should ask what is your normal since you mention her response.

Maybe seek out relationship counseling. There are many books on Lupus for parents and family members, to help understand the disease. Sought any out?

I am sorry your heart hurts. Lupus affects everyone not just us who have it...be patient, be kind and seek understanding for yourself.


02-13-2008, 01:39 PM
... this was an amazing response.

I am sitting in the hospital with my fiancee - 1200 miles from home.

She has had to move back in with her family while she is fighting this and I'm trying to stay strong for her and for us too.

This response was a reminder that love is more than just sex. It's all the "little things" that people can take for granted. Yes, I do miss that type of physical intimacy but I realize that things happen in life that makes that impossible sometimes...

There are so many other ways to be intimate. It reminded me of why I fell in love with her to begin with.

I had not been able to be see her since she was admitted into the ER on December 26th, 2007.

Just being able to hold her hand or kiss her gently has made a HUGE difference for me. While I ache knowing that I will have to go back to Baltimore tomorrow, I know that when I return, it is with purpose and a new determination NOT to let Lupus destroy all the love we have built over the past five years.

Thank you so much for this.

02-14-2008, 03:53 PM
You are welcome Her Angel..and I hope she knows you are (her angel). Some of us long for such understanding.