The Cost of A Chronic Illness

Life was good. Bills were being paid. There was even money left over for things, you know the things you don't really need but want really really badly. Ahh...this was the moment my little family of three had waited so long for.
Then came an unexpected diagnosis. The big D. The good life was gone in an instant. The first blow was the uncovered hospital bill. Thanks insurance! It was a slap in the face. They said Emily being hospitalized in DKA was not medically necessary. WTF??? ARE YOU FUCKING KIDDING ME???
Yep. Slap in the face #2, the giant brown bag of prescriptions. Serious it was a grocery store brown bag. Then the new Dr. in our lives Mr. Endo. Luckily insurance was nice enough to give us a copay for that.
Fast forward 4 months. I kept hearing about this thing we HAD to have. A Dexcom....then two months later a insulin pump. By month number six into this new normal we were drowning. I started using my credit card to pay for everything. Thanks to this new spending the credit card company was more then happy to up my limit. A blessing and a horrible curse.
It seriously felt like there was a dark cloud over our heads. Bills were coming in and I was worried how they were going to get paid. None of this was any ones fault yet it felt like we were being punished.
I guess Emily didn't need these extra devices, but when you are chasing your 4 year old under the kitchen table and holding her down to give an insulin shot it feels pretty damn necessary. So we went without.....ALOT!! No eating out, no new clothes, no hair cuts, no anything.
Despite all of this how could I complain when there are children in other countries that can't even afford insulin. But still it was hard. Really hard.

So after three appeals to the insurance company they reluctantly started to cover a portion, a super tiny portion of the hospital stay. We paid the hospital doctors bill in time, and by some holy miracle the insurance company said we were paid in full even though we still had $5000 left. Hallelujah!!

We took our first vacation just this past weekend. We now have haircuts and occasionally eat out. I still have about $10,000 yes that many zeros, to pay. Life is very slowly returning to a somewhat normal state.

It's so incredibly wrong that an incurable disease should cost us so much. This wasn't an unhealthy lifestyle. This wasn't something that could be prevented, yet here we are. One of hundreds of thousands of families that are now struggling just to make sure our child is as healthy as can be. The state of our country has taken a terrible turn. I am afraid for others and ourselves. It shouldn't be this way but sadly it is.
Type one diabetes has already cost so many adults and children so much of their lives. They've lost a functioning organ, more time then you could imagine thinking and calculating every aspect of managing this disease. It has cost them hours of time lost at work and school. Really.....isn't that enough?

Comments

  1. Hospitalization for DKA not medically necessary? I had the same response when I read that... That is just down right awful.. I am glad to read that things are getting a little back to normal.. Do not give up the fight.. In addition to helping your daughter, you are probably also indirectly helping others who will face similar circumstances with these companies.

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