I have had SLE most of life, over 30 years diagnosed. Both my brother and I had been the sick kids in our family with him really sick....so i did not think of myself as being really that sick when compared to him. In highschool we began to compare some of ways we got sick...well my brother always said...he was going to die young. I think mainly pain was bad and back than only thing they were giving him was prednisone pills....so by age 27 his bones were that of 70 yr old. He had nodules in his lungs to this day i do not know what they were.... film coated lungs as well. He was on dialysis 3 than 4 days week...he still work full time and supported his family well.
Sure he killed himself because he loved his family so much...he pushed too hard and died at 34 with wife and 2 beautiful daughters ages 3 and 5....5 yr old graduated from kindergarten week after he died.
Here is what you need to know....he never even dreamed he find a woman to marry him with how sick he was much less have two beautiful daughters In those years he lived a lifetime by all the love he showed them and them him. I guess i was one of the few or only one that knew he never thought any of that would happen to him.
Since the (1980's) they have made huge strides in lupus...i have lupus they never knew for sure what he had...we just had many similarities. They know how to treat it so much better and continuing to make strides. His daughter married a genius of young man who has made it his goal to find cures or better ways to treat autoimmune diseases...and if anyone can this guy can...but more importantly he keeps me updated on the strides they are making or about to be public and it is amazing.
I hope you and your wife are not too old because there is huge chance her disease will be much more manageable in your lifetime.
As to now...i watched my brother, my mom and husband do it over me...my husband has his own disease now destroyed his ankles.... my nephew who is working on that cure has autoimmune disease himself now...and his wife my niece got malaria while in Ghana.
I know how your wife feels...i hated when we had to miss something because i was too tired. My husband to this day says he never really cared...he says he just never got about how much pain i was in till he got sick himself. My husband has made my life so much better by just having him in it....i was oxygen myself for about year and they do not know but i did not need it...that is so typical of lupus.
SO still take her out on picnics, movies or nice dinners.. whatever really makes you both happy. We loved hiking ...with ra in my feet and his ankles destroyed well hard now...but i am working on him getting some false ones and me...ah if eventually i need to take that helicopter ride out..so be it...so far i out stubborn the pain and refused to take away beauty of nature.
I hope you guys can share love and joy together...that is all that really matters. Have the best doctor for her...if she loves her doctor and you can see that they care for her that is one you want...if not find one that does..do all hard work about calling and asking what kind of doctor they are...online searches and reviews but do find one that she loves....we know they do anything to keep us alive and never just do what is easy but instead do what will save our lives longer.
i been lucky to have such doctors and they make all difference....but your love does it the most. I saw it in my brother, myself with mother and brother and sister...friends i known for years. love cures us ...do not give up hope...not for a long shot.
Sorry so long....you just sound so sad and i know ...how helpless and horrible it is to be the one just holding the hand....but now i know it means so much more than just that. if you could only know ....you your love is healing her.
and i am here if ever you just want to talk about her and who she is i love to know more.