Disruptive Women

I periodically check out an organization called Disruptive Women in Healthcare to see what's going on.  Despite the fantastic name, it looks a tad too corporate/non-profitty for me (that's how disruptive I tend to be), so I've never looked into joining it. Anybody out there on the interwebs who's a member of Disruptive Women in Healthcare?

I'll show you disruptive.

I think Sophie's name and persona is being used for MediCal fraud. This weekend I got a stack of papers, including 5 Explanation of Benefits for services rendered three years ago on arbitrary dates for arbitrary amounts of money. The provider is The Department of Children's Services. The insurer is HealthNet. The dates were all in the fall of 2014, and we did not go to a doctor on any of them. We've never used HealthNet, although straight MediCal might have once. The Explanations of Benefits came in a big packet, each one followed by the exact same sequence of nine pages with language translation information and my "rights." That was 45 pieces of paper in the envelope, only 5 of which were the actual business at hand. Bear with me.

Don't be disruptive. Just listen.

Because it was Friday, and because I am disruptive, I decided to call the number on the sheets of paper and ask what the hell was going on. I spoke to four different persons in nearly two hours -- let's say their names were Rhonda, Wanda, Larry and Jill. Rhonda was the quickest to bump me off to Wanda who was the type of service professional you can imagine staring at a Service Manual and reading the script best suited for Disruptive Women. Whenever I said "thank you, Wanda," or "Ok, Wanda," she said, "No! Thank YOU!" and we might have gone back and forth for hours with pleasantries if I weren't so disruptive. I won't even tell you how apologetic she was every time she put me on hold and popping back in periodically to make sure that I was all right. In the end, Wanda sent me to Larry who -- quite literally -- FREAKED OUT. When I explained my "problem" to him for the second time (the first time, he kept insisting that he was trying to help me but kept asking me really stupid questions, so I admit to being impatient), in my most disruptive voice, he said, "Whoa, whoa, whoa. That sounds like something really big. Really big." Larry was undone and advised me to call the Ombudsman. He said Ombudsman in a tone of voice that conveyed the mystery of The Wizard of Oz and then, very, very solicitously spelled it out for me. Because I'm disruptive (and perhaps a teensy tinesy bit stressed), I actually interrupted him at that point and said, Larry, I KNOW what an Ombudsman is and how to spell it thank you very much. Larry and I said our good-byes, and at  approximately 4:54 pm, I called the number Larry gave to me and spoke to Jill who got a gold star for even picking up the phone so close to closing time and then after the first explanation sighed and said that I would have to call the fraud department of MediCal on Monday morning.

Are you still reading?

I put my finger to my temple and did a Rodin pose and then recalled a similar stack of papers that I received earlier in the year or maybe last year with a whole lot of weird amounts of money paid out. There was one in there from 1999, when Sophie wasn't even a recipient of MediCal, so I called then and reported "fraud" and maybe even wrote a post on the old blog about it. Because I'm a disruptive woman in healthcare and mighty efficient, I pulled out that stack of papers and found my notes. Needless to say there has been no follow-up, and now I'm facing a Monday morning call to the Fraud Department.

The most disruptive thing I'm thinking at this point is who would want Sophie's medical identity, anyway? What would be great is if we could just switch with someone healthy milking the system and really go to town on the amazing benefits.

Veterans

The New Neurologist was great.* He spent nearly an hour with us, listening. He very much wanted to help us. He called us veterans. I watched him observe Sophie throughout, and even though he doesn't know her, I think he got her. I feel a new resolve to get to the bottom of things and figure out what might be causing these weird symptoms. The New Neurologist was pleased that the CBD is helping Sophie's seizures and puzzled over her deterioration. He might have some ideas. He seemed intellectually curious and kind. The New Neurologist wants to rule out some things and has ordered an MRI, a lumbar puncture and some blood tests. As loathe as I am to do tests, we haven't in more than a decade, so I'm putting aside my partially justified and partially insane doubts about the profession and letting go. Plus, he gave me his cell number on a sticky note and said he was available at any time if I needed anything. When I type that out, I feel a bit of a thrill at the words -- a sort of pick-up line for a mother starved for attention for her declining daughter. Gallows humor. My parents are helping me to purchase a bath lift system for our bathroom so that we don't continue the dangerous clusterf*^k that is bathing Sophie. This sort of thing is a kind of acceptance and it is difficult to do, and I think you know why. Acquiescence. 

Is there a difference between acceptance and resignation? Between surrender and acquiesce? We're all good here with words. You tell me.

Here's a poem:

Because Even the Word Obstacle is an Obstacle

Try to love everything that gets in your way:
The Chinese women in flowered bathing caps
murmuring together in Mandarin doing leg
exercises in your lane
while you execute thirty-six furious laps,
one for every item on your to-do list.
The heavy-bellied man who goes thrashing
through the water
like a horse with a harpoon stuck in its side and
whose breathless tsunamis rock you from your
course.
Teachers all. Learn to be small
and swim past obstacles like a minnow,
without grudges or memory. Dart
toward your goal, sperm to egg. Thinking,
Obstacle,
is another obstacle. Try to love the teenage girl
lounging against the ladder, showing off her new
tattoo:
Cette vie est la mienne, This life is mine,
in thick blue-black letters on her ivory instep.
Be glad she'll have that to look at the rest of her
life, and keep going. Swim by an uncle
in the lane next to yours who is teaching his
nephew
how to hold his breath underwater,
even though kids aren't supposed
to be in the pool at this hour. Someday,
years from now, this boy
who is kicking and flailing in the exact place
you want to touch and turn
may be a young man at a wedding on a boat,
raising his champagne glass in a toast
when a huge wave hits, washing everyone
overboard.
He'll come up coughing and spitting like he is
now,
but he'll come up like a cork,
alive. So your moment
of impatience must bow in service to the larger
story,
because if something is in your way, it is
going your way, the way
of all beings: toward darkness, toward light.

Alison Luterman
via Gratefulness.org

*For those who missed it, The Old Neurologist we've used for nearly four years lied to me about why she didn't want to discuss medical cannabis and Onfi interaction when Sophie was hospitalized two weeks ago. She claimed that she had received direct orders from her boss that she wasn't to discuss medical cannabis. It turned out that there was no such policy (at least officially, and I wouldn't be surprised if Pressure From Above was happening), and that she just didn't want to discuss medical cannabis with us. I don't trust The Neurologist now and certainly can't leave my daughter's care to her. When the profession's only use and power for your child over 22 years has been to write prescriptions for lethal and ultimately useless drugs, however well-intended, if you lie to me, I can't do it. I understand fear, and I've tolerated that. Transparency and good communication is as important as intellectual curiosity, and if you don't have either, I can't do it.

When only cliches will do

So, I know why Sophie has been so agitated lately, moaning and flinging herself around. She's been in severe pain. After ten hours in the ER yesterday, x-rays, CAT scans, blood draws, urinalysis, morphine, Ativan and much poking and prodding with the suspicion that she had a bowel obstruction, they determined that she had impacted stool. My good friend Moye sat with me for hours in the ER which kept me on my best behavior. Best behavior for me means a tired resigned air when the lab "lost" the blood tubes and they had to come in for more sticks. It means I only gently corrected them from administering a bolus of Benadryl to "calm her down" because Sophie has a paradoxical reaction to Benadryl. I'm devastated that Sophie's been so uncomfortable for so many days, maybe even weeks, but I'm strengthened by the confirmation of my instincts. I just knew something was wrong. It was an exhausting day and night, to say the least, but the nurses and physician assistant were remarkably kind and competent. Today, it's all Magnesium Citrate and enemas. The shit, literally, has hit the fan.