At the Sjogren's Society of Canada last year we had a dynamite speaker - Iris Zink. I wrote a blog post about her and the talk she gave.
It's here: http://bit.ly/1RPyhyf in case you are interested.
She usually speaks in front of health care professionals, to help them develop more comfort with the topic.It's certainly needed.
Thanks for sharing. Luckily, my partner and I have been able to keep the lines of communication open, but there's no doubt that being in a lot of pain, and having many places that hurt make it harder to feel spontaneous or playful.
And it makes it worse when doctors don't acknowledge that. I remember dealing with one rheumy and was enumerating that I was having problems doing household tasks, was tired a lot, could no longer do some volunteer work I enjoyed, and that pain was getting in the way of my sex life. She jumped in on the the last bit, and said "Oh, people just get used to doing without that." I found that so offensive, that it was immediately dismissed, like connection wasn't important. Versus a discussion about what it was that was causing me issues (for each of the items on the list), and whether there were possible solutions or work arounds.
Thank you, Annette, I needed that. Followed Your blog on into her article too.
For me the issue is that I'm so dry and itchy. I rub myself raw at times. If I'm not raw, I can deal with the pain that I experience internally. Usually I convince myself to relax and then I can start to enjoy it better. I love making love with my husband. We just don't get to do it much any more. Miss it. That intimacy is so good for the mental health.
I don't know if this is because of sjogren's or if finally at the age of 51 I'm going through the "change of life?" But it has been this way for a few years now.
Have you tried coconut oil? It's got antibacterial, antiviral, and antifungal properties in it, and acts as a great lube.