Think brain surgery is scary? Try the medical bills.

It's no secret we owe thousands in medical bills. My husband's insurance wouldn't cover me once Medicare started 12/06. Since they wanted to gladly accept our money despite getting busted for putting a microfilm in my file saying to never pay any of claims again (and to be sure to not tell me about it), the state department ordered them release me from our family's plan.

So, I've had solely Medicare since then. It's great because it's a national plan so I don't have to worry about the fact I receive care in 3 states. The bad part is that Medicare only pays 80%.

Right now I can't think of how many of my 14 surgeries were under Medicare, but I'm thinking it's around 5, including brain and spine work, and some odd work for a majorly squished artery.

Most of my neurosurgeries have run about $160,000 just to stay in the hospital (each time). The surgeries are another story, around $150,000 (each).

Now if you have more functional brain cells than I, do some quick mental math.

See the problem with paying 20% of costs? Every surgery, every admission, room and board, doctor visits, fluid drained off the hip, cortisone shots, MRI's, CT's, DEXA scans...this is the reality of not only my life but that of my family's as well.

We go without to pay off as much as possible. Are we making a dent? Not a chance. But we are doing the best we can. We pull off some great creative meals using whatever is on the shelf. Recently I discovered a Big Lots and their wonderfully cheap ($1 and $2) brand-name cereal such as Honey Bunches of Oats (about the only cereal I can handle).

I have been trying for months now to find a Medigap (aka Medicare supplement policy). What a frustrating journey! I sought assistance from the AZ Dept of Insurance, Medicare, and various other sources. There are plans GALORE for SSDI folks. In this state, there are 10 Medigap policies for people under 65 on SSDI. How many of those 10 have a program in my county? ONE.

Well technically, 2. Both are with the same company. I should theoretically be eligible for a no-deductible Medigap policy but it's $345 a month. YOWZAS!

Option 2 they offer the same coverage but it's $184. The deductible is $1900.

There really isn't a choice there. Things are tight enough as it is and there is no way we can have $345 withheld every month out of my SSDI payment.

I meet on Tuesday with an agent from this Medicare supplement company. I pray it will work out. There is no way I can have my CCF surgery redone without it. Now with this Tornwaldt business etc etc, I've just really got to get some help.

It stinks to have to go without even more around here, but beats adding to the astronomical bills already haunting us.

Today is the day! (CPAP)

Can you believe it? My DD is getting her CPAP today. No kidding.

If insurance doesn't cover it the purchase price is $1,046.71. I don't buy that at all. They're going to take care of this one way or another.

DD is so excited! I bought her some Disney princess stickers to put on the CPAP to make it her own girly thing. The stickers have been in the kitchen for weeks now.

If all gets worked out today, I'll get a pic of her tonight and post.

It's been raining all day and is nice and dark out. I love it. Feels like I'm back home. I'm glad today is the rainy day and not yesterday. I had to drive for the first time in weeks to the other side of town to see my pain man. He is keeping his fingers crossed that things from my surgery 2 weeks ago will maintain healing so I can have an uneventful Christmas, but he admitted his concern that this may be the honeymoon period; with EDS, it is easy for complications like the nerves resticking, scar tissue growing back, etc.

I'm going to not worry about that and continue to take things one day at a time. Nobody knows what will happen next in life or what is around the corner, so I going to appreciate what I have, both great and small, and be thankful for any opportunity I have to live and love others well.

ETA Pics:

Decorating the CPAP with Disney princess stickers


Sound asleep! It's a miracle!

Universal health care. Dying for an MRI.

http://tinyurl.com/2epo4y

Girl dies of brain tumor after doctors tell her 'headaches are just stress'

This 22 year old in the UK died after waiting 13 weeks for an MRI. She didn't make it to the test, never found out about the brain tumor that would take her life.

I am not saying I am for universal health care. If you know anything about my situation, then you know things in the United States aren't so hot either. There has got to be a better way, something better than both of these. I'm not pretending I have the brains or skill to pull this off. There are just so many things wrong on so many levels with both systems, and I fear it will get far worse before it gets better.

In any case, it is inexcusable.