Epilepsy, employment, disability. . .

I am curious how often people have to jump through hoops because of thier Epilepsy dx, or while trying to find the dx? I ask because my husband has been having severe issues for several months now. At first he was able to work enough and just use FMLA to keep up with the days he missed (without pay, since he's used all sick days, bummer). But he was soon missing so much time that it seemed to make more sense to see about the short term disability that his employer offers. He is qualified and is now recieving benefits, but we have to jump through a few more hoops every week or so to keep them up. And we're uncertain how long this is going to last and at what time we need to consider him unemployeable. The problem is this, my husband is also a brittle diabetic since fifteen years old. His siezures haven't been positively identified on EEG and we're waiting on the VEEG results so don't know about that. We do know that while in the hospital for the VEEG they found issues with irregular heartbeats causing some of his spells - so we have a little bit of an answer, but not the whole picture yet. His irregular beats were bad enough they wanted to do a heart cath, but he declined. He has to go back to the cardiologist for followup and stress-test and had an echo-cardiogram while there before they would let him be discharged. Here's our dilemna, with so many issues and still no full answers, we're getting frustrated (my husband has actually been in tears because he feels like it's so hopeless and he fears the doctors all just think he's crazy) trying to decide when to shift gears into long-term disability options. We can attempt that through his employer, but he doesn't qualify through SS since he's earning above thier minimum requirements with his short term disability payments. I'm grateful, but we're trying to prepare for the future too. We already have three specail needs children and we have got to make sure that we're considering everything ahead of time. So how do we make sense of all of this? I'm attempting to co-ordinate and organize everything, but that's hard for me too, since I'm just a tad bit scatterbrained all by myself (LOL). Katrina