Plagued with Pagets of skull 0 cure

In July I was diagnosed with Pagets disease and a herniation of brain tonsillors. I have 2 immune issues already and no cure is known for Pagets. Suffered for some time not knowing what was wrong. As the pain progressed, constant brainfreeze debilitating headaches. Growth on my head started as a dime size,noticed while drying hair. It has now grown from dime size on side to golfball elongated past hairline to eyebrow. No cure. Started treatment to slow process. 6 months then more nuclear testng to see if it slowed or came out on more bones. Then there is the Chiara malformation and herniation of brain. Skull Surgery is only way to help this .Gonna try to hold off as long as possible.  The recovery will be 6months +. So working will not be an option when surgery occurs
Missed a lot of work (as a special education para for 17yrs+ ),lost double pay on days over allowed limits . Needless to say it's taken its toll on my whole being and my life . Behind on everything and afraid of what's going to happen . I can't fail my daughter, want to be able to take care of her and our life.Health Home Heart.