I was diagnosed on 1-22-10 with a rare form of lupus though I have been dealing with side effects for years. The last 3 to 4 months my symptoms had gotten "unbearable" as I could no longer turn a door knob, open a car door, hold a pen, hold a cup, etc. My husband has effectively withdrawn from our 9 yo high functioning Autistic son along with me. He told me tonight that all this medical stuff is NOT what he signed on for and if this is the way it was going to be then he would "rather not". I am so dazed, confused, and disoriented by all this I don't know what to do or where to turn. From June until the end of December last year I was right by his side when he was diagnosed with a tumor and POSSIBLE cancer (thankfully it was not). I put my own health aside to stay by him and with him when he had a tumor the size of a lemon removed from his neck right before Halloween.
Let me go back a few years... He and I met 11 years ago at work and immediately started dating. Within a few months, we were pregnant. Our son was born in July of 2000. Since our sons birth, I have COMPLETELY taken on the responsibility of our son. He has has the freedom to come and go and do what he pleases. And I didn't mind too much.
About 2 years ago, I had a heart attack (cause remained undetermined till 1-22-10 as they now know this form of lupus can cause heart attacks) While I was in the hospital, my son stayed with HIS mother, while he stayed at our home, about 30 minutes away, without visiting our son or me. Since my heart attack, I have been unable to work. Which has been a HUGE bone of contention between us. About 2 weeks ago, I was taken to the ER for SEVERE pain. As I remain uninsured, all the ER did was give me a pain pill a referred me to a clinic that specifically sees uninsured patients. On 1-19-10, I went to the clinic for the follow up appointment. Bloodwork was done. I left with a prescription for steroids and a WORKING (not a definitive) diagnosis of either Rheumatoid Arthritis or Fibromyalgia. When I got home, my husband refused to give me the money to get my prescription (eventually he did, but after MUCH crying and fussing) On 1-22-10, the doctor called me with some of my results (she does not have them all back yet) and said that it looked like Lupus (she felt 95% safe in saying this). Tonight, the husband told me what he said. And he said it in front of our son. I am so confused. I didn't ask for this, and I love my husband with everything, because, before now he has never let me down (except as a parent and I was happy to step up and be both parents for our son) But I don't know what to do. If we split up I have NOWHERE to go. My family all live in PA. I can't legally take our son there, but I can't afford to go to court and petition for a right to move. Facing my medical crisis, I need a familial support system. I also can no longer be the ONLY support system for our son. But I can no longer work either, meaning I cannot earn a living for myself and our son. Someone who has any clue what I can do to first stop him from leaving or kicking me out (which he threatens whenever times get bad) please help me. But second, what can I do to keep custody of our son (who he would try to take to keep from paying child support but has never been to even one of his Autism doctors appointments.)? Can I move out of state BEFORE anything has been filed and take our son, so I can establish a familial support system? I am also worried that if he gets awarded even JOINT custody his mother would be a bad influence on our son, as she trash talks his ex wife in fronts of his other children. I know he wouldn't take on the responsibility or the burden of our son while he is with him, so it would be left up to his mother. How can I go about proving any of this is a court? Someone PLEASE help!!!