Thursday, August 10, 2017

I thought I knew what difficult meant, now I know better

Warning: massive, slightly tipsy health and life update coming, combined with a rant, combined with a lot of other stuff.

Lessee, as I start this it's August 10th. That means the newest phase of our personal hell started 32 days ago, when my Blazer blew a head gasket.

That was a pretty good indicator of what was to come.

Chris cancelled his classes for that week, knowing he would need to go to the ER later that week. Which he did. I drove him there in an Avalanche borrowed from a friend. He almost didn't make it through the door. Frankly he didn't make it through the door under his own power, I found a nurse to get a wheelchair and wheel him into the ER, while I shepherded 4 year old Christopher and his safety harness.

See, back in June it was determined that Christopher is autistic and has a speech delay. The delay isn't just in his speech, but also in received speech (understanding others). So we're not talking a kid who will play quietly, or stay in one place, or be able to even tell new people his name. And he's an escape artist who is constantly plotting ways to go on his own adventures without adult intervention. Yeah, it's hard. Very hard.

So if you can imagine the three of us, Chris, Christopher, and me, sitting in the ER of the local hospital, with Chris looking like he was on death's door.

That's how this started.

We found out later Chris was a few days to a few hours from dying.

He ended up admitted for 5 days with a diabetic hypersmolar crisis. From undiagnosed diabetes. Stemming from his rhabdomyolysis caused by surgical complications from last September's surgery.

So our world got turned upside down. Again. You'd think we'd be used to this, but this is another level of complication.

On top of diagnosis of the hypersmolar crisis, a second previously unknown cancer tumor was found.

Yep, that's still a thing.

Fortunately the new endocrinologist (the last was fired, for not handling zebras well) who is the main reason I chose to take Chris to the local ER (this endo is known for actually listening to zebras) is treating the cancer seriously.

So Chris isn't working in order to be ready for any cancellations that pop up (his classes are scheduled in week increments ahead of time, and his students have to take time off of work to attend, so he can't just drop them at a moment's notice) and we've reworked a lot of life to deal with the diabetes. More medical equipment, an oxygen concentrator, a second air conditioning unit to deal with the humidity and climate control in the house, then meeting our out of pocket max, plus the normal bills and everything I had to do (take out, totally different food, fixing our lack of hot water) in order to survive handling everything myself and get things ready for him to get home...

We went through $28k last month doing all of the above. $28k.

We still haven't managed to get everyone back on a normal schedule.

But it gets better.

We had just met our out of pocket max when Harvard Pilgrim cancelled our health insurance and backdated it to June 30th.

Why? Lack of payment, supposedly. Except my account balance showed $0.00 and there was no option in the online payment interface (which we're forced to use because we went through the exchange) to make a payment. I thought it was weird, but we'd lost our subsidy earlier in the year (isn't that the point, working until you don't need the subsidy?) they'd overcharged us, and I knew they were applying the overcharge to our premiums. I thought it was weird that I didn't have a payment to make, but when Chris almost died it fled my mind.

... Until I found myself paying $450 for half a month's worth of Levemir because our insurance was cancelled.

According to them they'd issued us a new policy because the exchange told them to (the exchange says they did no such thing) and not notified us. When I asked them why the old policy was showing as active and paid then, they said their systems hadn't caught up, and I should have known about the new policy WE DIDN'T KNOW EXISTED and told them their system wasn't showing me the right policy.

Uh huh. I got blamed for their technical issue.

What's worse is shortly after I received an invoice for our active ongoing insurance policy with the same numbers and a due date of August 25th. Sent after they cancelled our insurance.

That might take a state senator, the insurance commission, and the governor's office to sort out because all attempts to fix it with Harvard Pilgrim failed.

And that's where we are. No income, no vehicle that is ours (and I need to give the borrowed one back soon), no health insurance, horribly expensive meds to pay for, and cancer treatment to continue while I fight with the insurance company while caregiving for a bedridden husband and an autistic mostly-non verbal hyperactive hyperintelligent escape artist 4 year old. And two dogs and two cats. And so this whole house of cards doesn't come falling down, myself as well.

I'm barely holding it together. Actually that's being rather generous.

So here's a lovely list of the things insurance won't pay for, if we had insurance:

A working vehicle
Another ac unit
An oxygen concentrator immediately, versus proving he needs it by jumping through hoops
Diabetic testing equipment that actually works
Dog food
Cat food
Preschool supplies for when Christopher starts preschool in another couple of weeks
Landscaping because I can't do it
A roof over our head
All other bills
Whatever it takes to maintain my sanity and not kill myself with exhaustion

Anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to always works and doesn't have a fee. Messenger Payments to me also works and doesn't have a fee. Or just ping me on Facebook, I'm easy to find.

Thanks all,