It sounds like you're doing your very best to handle a difficult situation, I'm sorry it's stretched on so long! I'm glad you're reaching out, it can help in many ways.
I can offer at least one hint for your day-to-day – consider tinted glasses for use while you're in front of people. Find a tint as dark as possible for indoor lighting. That can help to hide the fact that your eyes are different, so reduces some of the anxiety.
The wait for treatment with TED does feel so wrong, I know, but the truth is that surgical interventions taken during the hot phase can actually make things *worse* so that you would find yourself with more swelling and no further options for correction. That's an enormous risk, and it would mean perpetual problems. At this point, I know you've been waiting a very long time, but once you are confirmed to be in the cold phase, you can be confident that surgeries will accomplish what they set out to accomplish, and that's important.
If you're in the SF Bay Area, I'm pretty sure I know what your HMO is – I am covered by the same HMO, and I actually feel like I DO have a “team” of professionals, because our information is available to all of them at once. I think what you're looking for is a more holistic approach, which I think they're developing, but it's immature.
I do think you'd be wise to at least check in with Shiley, everyone I've spoken with from that facility, during the 8 years or so I've been attending conferences, has been truly immersed in this topic, they know a lot, they're fascinated and interested in finding the right answers for each patient, and they're extremely empathetic. They've done research on the emotional aspects of TED, and found that the emotional hit can be worse than having a cancer diagnosis, gauged subjectively by the patients themselves, so they truly understand and care about what the patient is going through.
We've also met people from Kellogg, and they are equally excellent – much further to travel for you, so that's a consideration, of course. You may want to visit both, if you have the means, because the end result is SO important, you should feel that you researched and chose the very best.
It's POSSIBLE that you may be able to take advantage of some level of coverage, even in the event you go elsewhere, so you may want to start asking those questions now.
I wouldn't give up on your healthcare group, though – waiting is actually the best route to be taking, and the frustration that comes with it is no fun, but it doesn't mean you're not being treated correctly.
Hang in there!
GDATF Online Facilitator