TheSwordandTheSpoon's Status Updates

"I am going to go absolutely insane by the time this is over. I found out I have no access to the $14,000 in my unemployment account. Because I have to file for state disability. My muscle biopsy was three weeks ago for mitochondrial myopathy, and of course, it’s negative. I’ve been emailing my dr in Chicago for over a week and can’t get through. I want off the tacrolimus he put me on. I can no. Longer afford the gas to get to lab draws or the insurance to cover the cost. In a panic I called my neuro here and begged for help. And bless them, she’s going to bat for me. She wants to try me on ivig and if I respond well she can diagnosis it. He claims I can’t get it being seronegative, but she said she’d give it to me and can fight the insurance on it. Catch is I have a month left of insurance. If I don’t have some sort of state plan I am right and truly screwed. I am not in a good mental spot right now. She said as long as I can keep my care with him for neuromuscular she can help me, but he’s not responding, I supposedly can’t even get a phone call and I HAVE to go in person, which I can no longer afford to do. Soo. Yeah. I am praying I can find a cheap state plan, he should be able to diagnosis it now and I am fighting him tooth and nail on confirming. I have to start filing for ssi next week and finally found a lawyer. But I feel like a train wreck. I am financially struggling and if it weren’t for my housing situation I’d be living in my car. It’s just so overwhelming. Those were my two big front runners and since the one was negative, he needs to call it. I just can’t keep living like this. I’m having trouble tracking, my right eye barely opens and I’m terrified it just won’t one day. I NEED for the ivig to work. I need it approved, and quickly. It’ll be a game changer. I need a heavy hitter medicine wise. I just can’t keep running on e. Between this and my dysautonomia. I’m struggling. They finally put me on bp medicine and that’s been a godsend, but I almost fell again the other day. I’m so scared. They need to call this what it is so I can get better treatment. My therapist appointment is on Tuesday, and thank all that’s holy because that can not come soon enough. I’m just out of options. I’ve tested for all the things. Als, ms, lupus, mitochondrial myopathy, opmd, all these big, scary life changing things. I don’t WANT to be seronegative, but deep down in my bones, i know I am. They just need to legally call it so I can get the help I need. Why is this SO hard?!my last post never loaded. We’ll see if this one does. "