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Wind sucked out of me

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.

  Member Comments About This Blog Post:

2PB4JSNM 1/2/2013 9:21PM

    Oh Dear! God Bless you and your child. You have such a heavy heart right now. I have no advice of any value to offer....only my compassion and prayers for you and your family.

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Merry Christmas

Monday, December 24, 2012

Tonight is just one of those special times for me now. Some years ago now, I joined a lovely choir in a Unitarian Universalist church. We sing on Christmas eve, with such lovely, lovely people, with candlelight and with the church bell chiming, and we all in the choir hug each other at the end. I'm not what you would call religious, not by any stretch - no particular dogma quite captures how I feel about the world - but I do believe in this one moment where we come together once a year and sing peacefully.

Tonight, my inlaws came, and they are bible-thumping evangelical republicans who think badly of those who vote for democrats, and my parents come, and they are lapsed disenchanted Catholics, who think those who vote for republicans are a little bit loony, and we all manage to have dinner together and sing. These kinds of moments are important, even though we come from different sides of theology and life.

I hope you all have a Merry Christmas, if that is what you celebrate, and whatever you celebrate in your lives, I hope you all have a good, prosperous, healthy year ahead.

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SPIRALDOWN 12/24/2012 10:07PM

    Merry Christmas

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Living in the present

Saturday, December 22, 2012

Today I ate all my calories by 4PM. So now I'm a little hungry, but I probably won't be hungry tomorrow. I had a gloriously delicious, small, fresh cider donut at an apple orchard. I paired it with a small amount of cheese and 5 almonds to keep the sugar rush to a minimum.

I've been reading more trying to understand my daughter's condition. Her c1 vertebra is partially fused to the base of her skull. There are also irregularities in the lateral (side) portions of the c1, I think this is the main weight-bearing part of c1, as it were. This joint is responsible for one's ability to nod, I think. The way c1 and c2 work together is responsible for much of the side to side head motion (looking left and right).

Some of the articles I read mention sudden death being a possibility when there are irregularities of these bones, which is frightening. But I think this would depend on the ligaments there - if the ligaments wear, due to the changes or inflammation or something, then everything can shift suddenly. But the doctors are watching those very closely. They're good doctors. Very good doctors. I'm sure they would let us know if that were something I should worry about. I also read that sometimes the cranial nerves can have issues when there are changes to the bones there. Again, with the good doctors. (But they are human, too, whispers the worry voice.)

They checked her swallowing even, which turns out to be normal, but the journals say sometimes the issues with the cranial nerves cause swallowing difficulties that can come and go depending on head position and probably depending on inflammation.

She has giant tonsils, which may be making her swallowing difficult; they certainly hang way back down there in her throat. Like golfballs, said one of the people looking at the scan, almost excitedly. I don't recall what her title was - speech pathologist or advanced nurse or something like that - there was a doctor there, too, and my experience with doctors is that they don't peacefully let people exclaim things like "don't you think her life would be better without those?" in their presence, unless they have some sort of specialized knowledge.

This sounds like an easy fix, but then I think, wouldn't an operation there increase inflammation in a very sensitive area of her body where inflammation has already wreaked so much havoc? And what about the meds she's on? Questions to file away to ask the otolaryngologist. (otherwise known as your local friendly Ear-nose-throat doc)

So I believe my hunger is actually a stress response. I need to stay in the present, where my child is smiling and happy and does pretty well at piano and kung fu, but has given up swimming for a while until her neck gets a little better. Her neck may never get better, but it is easier to say, just for now, and not forever, because it is too early to tell.

Breathe in, breathe out, relax, that is the nature of the game. I am alive now, and I have a good family, and they are alive right now, too. Writing this engages another part of my mind, so that the worry part can go offline a little. I need to embrace the worry part and hug her and tell her it is understandable to worry, but we're doing all that it is possible to do already. Calm. Calm. Calm.

So I return to the present.

  Member Comments About This Blog Post:

DEDICATED2HIM 12/26/2012 5:52PM

    yes, when C1 and C2 become unstable, death can occur. Something to watch out for is bouts of vomiting which can indicate a problem....
You are wise to learn what you can and be informed. And your daughter may need to modify her activity...ask her doctors what they think.
Keep posting. Keep your faith and we 're here when you want to talk.

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DLDROST 12/22/2012 10:06PM


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Week 3. woohoo!

Wednesday, December 19, 2012

At the start of week 3. I've officially lost 5 pounds of fat, and a little bit of water and muscle weight. Woohoo! It's good that this is working. It's been so, so long since I've had anything work. The bonus is that I don't particularly feel hungry, unless I get running around and forget to eat one of the snacks.

I don't think I look much different yet, though I do feel as if my clothes fit a little better. I still have over 35 pounds to go.

Today I felt ANGRY! at someone, but I went for an hour long exercise session on the elliptical. It felt good. Afterward, I used the red light therapy room and meditated to "mayan refresher delta waves music" while the red light box did it's thing. I feel good.

(I was angry at a chiropractor who was supposed to look at my daughter's x-rays before a meeting with me today. To me, he appears to me to be not taking the whole cervical arthritis thing seriously - when I said I really would feel more comfortable with him looking at the scans and x-rays before he continues treatment, because the other doctors in her life are saying there have been major changes what he said when back was "I'd be surprised to find any major changes in her bones."

Over the course of two years, under his chiropractic care, arthritis has crept along and fused my daughter's c1 vertebrae to the base of her skull. There are other cervical bone changes as well. I'd say that's pretty major, since it means her head will have issues with turning.

Sometimes in front of my child, he has questioned other doctors' treatment of her, saying it's a shame she's on such serious medications. He even used the word, "poison" in front of her once in reference to them. These medications have saved her vision, I am absolutely certain.

Those lapses were bad enough, but not looking at scans when major changes are reported on the radiology report and by the parent shows to me a more serious lapse of judgement.

On the positive side, he does seem to know how to alleviate pain.

I now feel very comfortable not seeing that professional anymore.)

Still, Woohoo! The sun has been shining today and it isn't too cold, and I now have a little more sorely needed free time. Maybe I'll lift some weights.

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68ANNE 12/19/2012 7:57PM

    Follow with what your gut is telling you. If he is the wrong person you know it

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Day 4. Cooking along.

Saturday, December 08, 2012

Ache-y today. Maybe it's from the flu shot, it's not a terrible lot of ache, just enough to slow me down some. Stomach is a little unhappy. I did laundry with the family and cooked and talked on the phone a lot.

Cooking seems like forever, sometimes - I chopped 3 onions and set them cooking (use very little oil, like 1/2 tsp coconut oil, then cover, the water from the onions essentially steams them), crushed a head of garlic and let that sit in flax seed oil, boiled about 2 pounds of shrimp, cut 1 green and 3 red peppers and set those frying, peeled the shrimp, boiled omega-3 whole grain pasta. Peeling shrimp was tricky, I kept snacking on them. I think I ate 3 ounces or so.

For that matter, I snacked on the peppers, too. At least shrimp and peppers aren't too calorie-dense. I kept aside 3 oz plain shrimp and 1 cup plain onion/garlic/peppers for my dinner, and mixed the pasta and flax oil and veggies and garlic for shrimp scampi for my daughter. If I'd remembered, fresh lightly cooked tomatoes would have been good in there, too.

My daughter ate the pasta with the shrimp and a good pile of parmesan cheese, but she manages to pick out all the peppers and onions, there will be a small pile left in the bowl when she's done. She likes it, though, she just has trouble, apparently, with anything that has fiber in it. And the flax oil is good for her.

Last year, she was on a high-fat diet because she lost weight because she was on some medications that made her not hungry. I worry that she's going back up on some of those meds again that started her into slow weight loss (she's supposed to be staying steady or slowly gaining weight at her age), so we'll very possibly be in the odd position of having her on a diet with a lot of fats (per a dietician) and me on a medical weight loss diet (per a different dietician). I'm relatively peaceful about her condition, though. She's in very good hands, and she's got a strong, tough spirit.

I also pre-baked some chicken breast and turkey thighs so I have an easy protein source for tomorrow. This time I was able to avoid eating the turkey skin. I had my husband put it away. There's a bowl of brown rice in the fridge. It helps with all these mini-meals to have pre-cooked items. I also have greek yogurt and small carrots and cucumbers.

Technically, it's actually a food plan with 3 meals and 3 snacks, the snacks are all like : eat more than 10 grams of protein but less than 20 grams of carbs, and keep it under 150 calories, please. The meals are 200 for breakfast, 250 for lunch, and 400 for dinner. I can eat 3 oz of protein if it's chicken or fish, but 2 oz if it's beef. I still don't know about beans, I'm guessing it's whatever amount of beans would give me more than 10 grams of protein but still be under 150 calories. Skim milk is one of those protein/carb things, too, it has 13 g carbs in a cup, and 8 grams protein. So a snack might also be, 1 cup skim milk and a couple of carrots or maybe an orange. Or 6 oz of that 0% fat greek yogurt with fruit.

I'm looking forward to the time when I'll have lost the weight that they say I'll lose.

It is definitely good to have help.

  Member Comments About This Blog Post:

68ANNE 12/10/2012 5:17PM

    You can do this!

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