Friday, December 28, 2012
Today I'm feeling like the wind has been sucked out of me.
It started Wednesday, really, when I started with a behaviorist who is working with me to work on food issues.
"So what is your family history?" she asked innocently.
I told her about my parents who are both on metformin (used to treat diabetes type II) and have high blood pressure, and who are both obese like I am (medically speaking, you know?), and my sister who has lupus and rheumatoid arthritis. And then I started to talk about my daughter and her arthritis and I just started crying.
"I'm so sorry I'm crying," I said. I've been explaining this stuff without weeping much for a while. Though I did weep some Christmas eve, explaining things to my mother-in-law. The part where my child's medulla oblongata/spinal cord is close to being impinged on by a bony structure in her neck terrifies me.
My daughter is still growing, and they don't have any case studies of anyone with arthritis quite like hers anywhere. The rheumatologist, though he is good, originally told us the first three times we saw him that she couldn't have arthritis in her neck, basically based on demographics - too young, female, wrong kind of uveitis. No arthritis elsewhere, which is not demographic. Right up until the new MRI showed all this pannus and fuzz and changes to her bones, never mind soft tissue inflammation, he was saying there was no way this could have been arthritis.
She is a first for her age, possibly, (though it's a big world, I'm sure there must be others elsewhere), and she is growing, so there is no way to tell how her bones will work out from here.
"What if that peg grows right into her spinal cord during one of these growth spurts?" whispers my worry self.
The doctor/fellow said that it is too early to tell what will happen to her bones; still, we are a long way from her dying or becoming paraplegic. But I cannot seem to set the issue aside. And my daughter may have permanent limitations, maybe because I didn't push for an MRI sometime earlier, before bones fused together.
I've been told, by my therapist, there is no way I could have known. But I feel terrible, anyway. And scared.
I'd been doing well diet-wise, but yesterday I ate comfort food. I had half a small cheese pizza and a cup of Edy's grand peanut butter cup ice cream. I went over my calorie budget by about 1000 calories.
The behaviorist Wednesday told me that with events like this, people go between being numb and feeling it, it's normal and I should let my tears flow. But my daughter needs me not to be crying and she's home for Christmas break.
The other piece that terrifies me is we got this "Explanation of Benefits" letter from the insurance in the mail yesterday. They'd been paying for my child's Remicaid infusions for over a year, but now all of a sudden they're saying "Benefits are not available for this service because it does not meet our medical technology assessment criteria or our medical policy guidelines for the diagnosis reported (copy available upon request)."
My husband and I spent hours already working out an issue where the insurance wasn't paying for about $4000 of physical therapy from 2 years ago, when my daughter first had the torticollis (turned, stuck head). There was an error where the hospital doing the PT bills in date ranges (1/1 - 1/31) instead of declaring dates of service, and the insurance computer decided apparently, that my child had PT on all of those days and thereby we hit our limit of 30 physical therapy visits and they wouldn't pay for any past that.
We got bounced back and forth between pleasant people. We'd explain the situation each time to an insurance rep, and then to the hospital saying that they were sending this to collections, and they all would say, "Oh, I see what the issue is, you don't have to worry, you're all set."
But then a couple of months later the bill would still be unpaid by the insurance. Someone at my husband's work had to spend a fair amount of her time getting someone to straighten it out.
The hospital refused to provide the insurance with dates of service, they insist on billing in these ranges. I believe if the hospital had been willing to provide simple dates of service, the issue would have been resolved much sooner and more simply. Basically, we were caught between two stubborn institutions. And I feel like my daughter was in the middle, with her neck hurting often and her bones fusing together.
Now, here they are saying that they won't pay for the stuff that is keeping my child from going blind, and which hopefully will keep the arthritis in her neck from progressing. The doctor's office says they've been having trouble like this lately, and the insurance has been paying after they resubmit. But what a terrible thing! I have enough to deal with, without having to worry about whether the health insurance is trying to get out of paying for necessary medical care.
We had to call them multiple times to work out the OT benefits, too - they kept trying to pay just for one unit of service, which is 15 minutes, and ignoring the other 45 minutes. They did the same with my child's well checkup - they were only going to pay for part of the checkup and we were going to get this bill for $90 in addition to the $20 copay.
I'm also worried about what the coinsurance will look like if she needs surgery, which she may need if this ligament holding her odontoid peg in place wears out.
Each MRI is costing us $200 out of pocket after the deductible, and will cost us probably over $600 for the first one in the calendar year due to the same deductible. They will need to do regular MRIs to check make sure the medicine is actually taming her inflammation. I believe there is a cap on the coinsurance, of a few thousand dollars. We spent about $7000 on copays/coinsurance last year, and well over $10000 on copays/coinsurance the year before. It's been difficult.
And I really feel that my child's future is on the line.
I'll pick myself up and carry on with the food plan today.
And I will exercise.