I am so glad that you made it on to the forum. I received your e-mail and my heart went out to you. I know it is difficult to live with this disease even when you have an informed and supportive family. But, when you have neither...It can be so lonely! I am putting a call out to anyone who can help us in this area. I know that you are not alone in this and that there are others who are dealing with the feelings of loneliness.
Is your husband unwilling to learn about your diseases?? You are suffering more than most because you have so many illnesses to deal with: SLE - Schleroderma - MS - and Raynaud's!!! He needs to read and learn about each of those and then learn how they each affect you and what your life is truly like having all of them (especially when one of them alone can alter your entire way of living)!!!
It is unimaginable to me how people, who profess to love you, refuse to acknowledge, understand and support you when you need them the most!!! That is unfathomable to me!!!!
We are here for you - This board was set up to provide support, understanding and education!!! You can always talk to us here about your disease and your feelings.
You are not alone Maria..please believe that!!