jasiusmom

My husband is 35 and very, very ill with a sudden onset of neuropsychiatric Lupus. Basically he has Lupus that has attacked his brain. He was just granted SS Disability in a 3 month period. Pretty quick from what I undertand. The losses this horrible illness has cause is incomprehensible. I have a hard time wrapping my brain around it. The obvious is he lost his health. He also has lost his business, ability to care for our children alone, drive, bike (his lifelong passion and he even had won races), and his general place in the world. I have lost the sense that my husband and I will grow old together, financial security (we now visit food pantries and are risking the loss of our home), a significant change in our relationship as there are times he is "not himself". We used to be partners in everything. Now I feel like I am the mother much of the time. We also have three children 5 and under. I can only imagine how they are processing this. The five year old will talk to me about it. the three year old is, well, 3... and also autistic so this ability to express is limited for varius reasons.

I am just so darn sad. I am in this with my husband forever, but I sure did not expect this to happen. I am really grappling with grieving and trying to keep on going as I work full time and have everything to manage. His illness is so rare they cannot really tell me a prognosis. Every night I repeatedly check to see if he has died. I have elaborate plans of how we will make it if he dies and then I feel guilty for planning life without him.

No one my age has a sick husband. My friends are great, but all their husbands are in the prime of their careers and thriving. I don't have anyone to relate to at all.

Thanks for letting me unload. It actually helped. Blessings to all that everyone is dealing with on this board!