Patience is not a virtue with which I’ve ever been overly endowed. So, you know, now that I have this long-term, looming unexpectedness I find my biggest challenge may be dealing with how little information is available to me RIGHT NOW!! I want to know NOW!! I’m like a three-year old having a tantrum. But three-year olds do not often get their way just because they want it. And most certainly not in the three-year old’s timeframe.

Some of the nice people I’ve spoken to have already made the point I need to make sure I feel control over some things. There’s so much unknown with any health situation–particularly neurological situations–that feeling like I’m not just a leaf in the stream is very important. But, as much as I agree with the notion, I cannot make news arrive at our door and so I can’t really control anything.

I believe I can deal with this thing. I do. So much more is known about the condition now than even a decade ago…. I have amazing emotional support, and my general health is fine. In the scheme of things I am ridiculously lucky. But I am stuck in an uncomfortable limbo waiting for the wheels of insurance, testing and diagnosis to all somehow work together. Anyone who’s ever been in a similar situation (or knows someone who has) understands the longer it takes to get to Point A, the longer it takes to get to Point B and on and on. That is what drives me absolutely bonkers these days. It’s like walking the wrong direction on the moving ped-way at the airport. Except, the forces that would allow me to turn around and walk the productive direction, or would switch the direction the ped-way moves, are tied up in red tape and paperwork. I try not to stamp my feet and stick grit my teeth.

No. I do not have health insurance right now. I haven’t had insurance since the last time I had an employer who offered health insurance through an organized group plan. Over my lifetime I’ve been insured primarily via employers, but I’ve also been self-insured. I self-insured when I was working as a tech in a music theatre, monkeying around the rafters and hanging lights, pulling cables, all that fun stuff. Husband, too, has most often been insured through employer group plans. When we’ve moved (which has been…a lot), we’ve hoped for jobs with employers who offered health insurance, but we haven’t used that as a requisite for where we sought employment. Since we’ve never intended to have children, insurance wasn’t ever the most important thing for us. We’ve focused instead on mom-and-pop businesses that allowed us a sense of building something non-corporate. As a waitress, I’ve had the chance for insurance, but that gets complicated. The hourly wage for servers is lower, and taxes must still be paid on your tips, of course. After that, you remove the insurance premiums and you tend to run in a deficit. It can be a challenge to budget, so I thought better to be careful, roll the dice and hope to stay healthy.

We looked again into self-insurance a few years after my old Branson days. I have to tell you, I was shocked at the difference in application processes over just that short passage of time. Both times we went through a broker, but the second included an online application I hadn’t seen before. I diligently answered all the questions for both Husband and I for the first twelve sections each. No problem. You know how it is. “Have you been treated for condition A, B, C, D, E, etcetera any time in the last 10 years? If so, where? What was the diagnosis and treatment?”

I was feeling quite pleased with myself until I got to section thirteen and read, “Were you ever treated for condition A, B, C, D, E, etcetera in the years prior to the years preceding the last 10 years, or at any point in your life? If so, where? What was the diagnosis and treatment?”

So…basically, have you ever been sick or hurt, ever in your life, and what happened?

That was the point when I threw the towel to Husband. His response was similar to mine. “How the hell am I supposed to remember what I was treated with when I was 7?” And we decided then that a self policy with a $5000 deductible that would still cost $400+/month maybe wouldn’t be a good investment at that time. We agreed to continue dealing with our health issues on a cash basis, and to hope for the best until we found work that could offer insurance. Years passed, but we did both find work that seemed to fit the criteria. Small, non-corporate businesses that we could help build with a small group of professionals. We put in our time and bartered for insurance. In both separate situations, the employers were willing to agree to covering the policies but would remove 100% of the expense from our salary. These would not be part of any larger group policy, so the expense from our wages was basically the same as the $5000 deductible/$400+ a month example from before. We decided again to keep the expense in our take-home pay and hope for the best, pay our medical needs with cash. We voted to support health-care reform. We found a great doc who appreciates immediate payments over slow-moving insurance pay-outs.

But, like Mark Knopfler said, sometimes you’re the windshield and sometimes you’re the bug. We’ve spent a lot of time as bugs in the last half-decade.

So here we are now and behind the eight-ball to boot. Husband is trying to develop a new group insurance policy with his employer through a new broker. It’s unclear if my situation is a fly in the ointment because I’m as yet still officially undiagnosed. More testing has to be done before the specialists are willing to say anything definitively, but they aren’t going to order the tests until we know what’s happening with the insurance. And it would seem that insurance moves at a glacial pace almost matching the speed of health-care reform. At this point the only thing anyone knows for sure is that eventually, when whomever says whatever and there’s finally some kind of policy in place, it will still take another half-year before this whatever-it-is actually has coverage. Which means I could be really sick again before I’m even able to get any real treatment. Or not. No one knows. These are not things over which I have any control.

My inner three-year old is not pleased.