Still here

Contrary to popular belief, I am still here and still plugging along. The past month and a half has been a blur. DS's broken hip, 11-day hospital stay and subsequent recuperation have taken their toll.

DS is doing well. His pain is improving and he is able to tolerate water therapy sessions, which are great for him. The hospital bills are starting to come in - we're at $33,000 so far. Insurance should cover the bulk of it, but we shall see.

I received a letter from the attorney for the insurance company this week asking questions about the "accident" that landed DS in the hospital. I filled a form out and in not-so-subtle big letters, pointed out that he fell from a manual lift because the much SAFER option of a battery lift or a ceiling lift are not covered by insurance. Yeah, that decision cost the insurance company about $25,000. How's that working for you?

Meantime, still battling for a much-needed replacement wheelchair. The latest denial came two weeks ago. Approved are a seatbelt, armrests and a footplate. Not quite sure where those are supposed to go since the actual chair is denied.

Also on the insurance front, we are trying to get approval for the first-ever treatment for DS's disease. For 22 years, we've been working to raise money, raise awareness and find a treatment. It's finally, miraculously here and we can't get it. His neurologist emailed yesterday and said insurance is asking for another blood test, so we will get that done today. When I run the world, medical decisions will be made by doctors and not insurance suits.

I saw a lightning bug last night. And I had to turn on the A/C this week. Summer is here.

Sarah
 

Day by day

I'm in my not-so-comfy sleeping chair at the hospital listening to DS's Bi-Pap machine hum as I write this. What a day. He's still in pain (apparently, the break is so high up they're calling it a broken hip) and having to be repositioned often. It takes two nurses to do this. And yet, a caseworker arrived today to announce that because his vitals are stable, insurance will likely deny him staying longer and we need to start the discharge process.

DS freaked out. I know if they had a blood pressure cuff on him, the numbers would have been sky high. He knows what I know. If he is released now, he will have to go by ambulance - he cannot drive his chair. And when we get home, I won't be able to care for him alone. Just yesterday, the doctor told him he was going to keep him through the weekend and look at releasing him Monday. That would be almost two weeks since the accident and reasonable. The bone should heal enough by then to make his pain level manageable.

I despise our health care system. I hate that some suit at an insurance company is calling the shots. Why do we go to the doctor if we can't follow their orders because they won't get paid if we do?

Insanity. It's insanity.

On a related topic, I've officially had my fill of hospital cafeteria food. So when a friend texted to say she was bringing dinner, I was thrilled. At the appointed hour, she called. She was at my house. I was at the hospital. Our wires had gotten crossed. I told her to leave the dinner in the kitchen and DH would have it tonight when he gets home from work. Back to the cafeteria for me.

We're living day by day. It's all we can do.

Sarah
 

When life takes a detour

I had a lot of plans for this week. And I had to scrap them all.

Instead, I'm parked next to DS's bed in the local hospital. He fractured his femur in an accident, and because of his disease, neither surgery nor a cast were a good option. Instead, we are hoping to let it heal on its own. Because we cannot care for him at home while he is at this level of pain, he will remain in the hospital and likely be moved to a rehab facility for several weeks until the pain becomes manageable.

He is 23, but is physically unable to press the call button or in any way to care for himself, and so one of us is with him 24/7.

Church friends have been providing meals and DS's friends have been providing moral support. I am thankful I'm organized enough that the bills will be paid on time with little effort on my part.

We will get through this. Just have to keep our chins up.

Sarah
 

A luxury is saving me money

A few weeks ago, things were crazy at home ... OK, crazier than usual. The cupboards were bare and I didn't have a spare hour to make a grocery store run. About that time, an offer landed in my email. I could order online and pick up curbside at a local store and they would waive the $4.95 fee.

Tell me it's free and I'll bite.

So I pulled up to the grocery store feeling like a celebrity, pushed a button and sat there like a kept woman while someone else loaded my groceries. All the while thinking, man this was a bad idea. I'll never go back to shopping on my own.

And I haven't. Except it hasn't been the budget buster I expected it to be. Turns out when I order online, I don't throw in those last-minute items that catch my attention and I just can't live without. I get what I need and nothing else. And you know what? My grocery bill has dropped a minimum of $20 a week. And I'm happier. Win win!

Sometimes you just have to go out of the box.

Sarah
 

This never happens ...

Received our Escrow Review Statement on our mortgage. I always groan when it shows up in the mailbox because it ALWAYS shows we owe, usually a couple hundred dollars or more, and our monthly payment goes up.

For the first time ever, we had an overage. Attached was a check for $28.81. OK, so that's not a lot, but it sure beats having to give them more money! More exciting, is that our monthly payment dropped by $25. Since we are used to the payment, I will just keep paying what we have been and the extra $25 will go toward the principal.

None of this is earth shattering in the grand scheme, but it is so much nicer to find out someone owed us for a change. And given the week I've had battling health insurance, I'll take it.

Sarah
 

Taking a breath, and moving on

Thanks for commiserating with me over the massive amounts of money we threw at medical expenses last year. I wish I could say it was unusual. But for the past 23 years - since the diagnosis of DS - it's been the norm. While we have what most would consider a really good, solid income, it has never felt like that to us.

We have good health insurance, but good insurance doesn't cover much of the equipment needed to get through the day with a physically disabled family member. It's ironic that when DS is in the hospital, the cost to us is nothing. Insurance covers 100%. But when he is at home, we shoulder a burden that impacts us greatly. By caring for him at home, we save the system millions of dollars but put ourselves at financial risk. It's a dark side of the system that hasn't been addressed and about which many aren't aware. Since we will not put him into a nursing home - where all his needs would be covered - we will keep plugging along.

Last year's out-of-pocket medical expenses totaled $48,000. Beyond the usual co-pays and 80/20 costs, that includes nearly $20,000 for caregivers; $6,000 for a ceiling lift so we can safely move DS from bed to chair to bathroom seat; the cost of caring for his service dog and repairs to everything from his wheelchair to the ramp leading into our house. Note: the ceiling lift was considered non-essential and so was not covered at all by insurance. Home adaptations, including a ramp to enter the home fall into the same category. I've long since given up trying to figure out the logic in that thinking.

I have learned to be super organized and keep a record for every single medical expense, no matter how small. I am meticulous about the mileage when traveling to medical appointments and ask for receipts when I have to pay for parking at the hospital. My work pays off at tax time, when I can produce proof of what we've spent and why.

So, yes, we will be receiving a nice tax refund ... which is already earmarked to take care of the crumbling bathroom with the leaky faucets that the plumber said are so old they can't be fixed. (It also has mustard yellow tile, circa 1972.) It would be great to throw the refund at debt, but sometimes other issues take priority.

Onward and upward.

Sarah
 

And that's where our money went ...

Taxes are done.

Out-of-pocket medical expenses: $48,000.

I can't even.

Sarah