cronic lupus

Dear Sylvia (My Blessed Late Mom's Name),
I feel your pain. After reading the posts from some of the people in this Forum, and from my own personal experience with recently diagnosed Lupus, people who do NOT have the disease truly either do not WANT to understand it, or, refuse to accept that a person can be SO sick every day. Your daughter in law is frustrated because your son has an incurable illness and she feels helpless. They do have drugs for the symptons but no cure. That, in itself, is frustrating. He is supposed to be "the man of the house," and, unfortunately, a lot is exected of him Your son needs to be in a support group AND his family must be with him. People who do not have a chronic ilness have a hard time dealing with people who do. My heart is with you. I have a son who is 44, and I've asked him to have the ANA testing done because he is first generation, as I am (my Dad had Lupus), and statistically, from what I've learned from this site, we have a 5-8% higher chance of developing it. Do you have a family history of Lupus that you are aware of? Please know that, as a mother and grandmother, YOU ARE NOT ALONE! We DO care. My husband had been living with me, with Lupus, for 7 months now. He hasn't really fully understood what my sickness is. At times, when he sees me washing the floors, or playing tennis, he forgets that perhaps 5 minutes or less later I can "crash." It takes a while for a family member or members to accept and understand our illness. Please try and get him to at least join this site....and perhaps he can convince his family as well, to join us. We know, first hand, all about the disease. We can try and help....please stay in touch. Bless you.

Mine says that too...but he's the one I am cleaning up AFTER!

Sylvia I can't believe that your son's doctors can't do anything more for him. I think he needs to go find someone who can help him. It's not like he has terminal cancer that has spread so much that there is no hope. There is always hope. He just needs to go somewhere else and find someone who is a specialist in this field. He has to keep fighting.

Slyvia, Iam not saying this to upset you even more, I just want to let you know it is so important to have family support when you have Lupus as severe as your son. It sounds like he doesnt have much understanding and support in his home. I have Lupus for past 11 years and for the first 6 years I spent fighting for my life in much of the same conditions as your son. I had family understanding, support and love and it was still so difficult, depressing and discouraging. I can say 100% I would not be here talking to you if it was only up to me back then. One of those times I was in the hospital receiving chemo therapy. I was laying on the bathroom floor weak from vomiting I was so beat down and my mother was there I screamed and said "I cant do it anymore leave me alone." My mother screamed louder back at me' OH! YES YOU WILL." and it was that kind of love and support that made me fight, without it I know I would have gave up, because I truly wanted too. Your son isnt going to get better if his family doesnt get better. You need to have a family meeting with him and his family. They need to decide together what do they want? Do they want a father and a husband or do they want to move on. And if the answer is they want him in their life then they have to help him fight for it. They have to accept that the father and husband he was before lupus is gone but they still can have a father and husband with Lupus. If it is something they want then as a family they have to sit down and make a plan on how they are going to live and help him be in the best health. With a plan, understanding and love your son will get better and accept his new role as a father and a husband and his pain, sadness, self respect and health will improve. They can still be a happy family they need help figuring out how to go about it WITH his illness, because it sounds like his family is suffering too and it is causing him even more suffering. Bottom line as a family they need to really sit down and decide do they want to still be married and do the kids still want a father. If their answer is yes then make a new family plan together. If they know as a family what their goal is and what their role is in the plan they can fight for it together and not be a hurt, lost and confused family. If they decide they dont want to deal with your son as a husband and a father who has Lupus then they need to make changes to not be a family unit anymore. Either way your son needs a more positive, hopeful, loving place to live, because HE DESERVES IT.