Cold Spaghetti

The hair, the single thread, holding us to this place is fraying.  The primary care doctor I saw, one of the doctors Blue Cross Blue Shield asked to fill out one of the forms related to prescriptions that had been written, although she did not treat me for any illness or condition and did not see any of my medical records, wrote on that form that I had a history of ulcerative colitis and allergies.  While she was at it, she should have written up that I was morbidly obese, psychotic, and had cancerous legions throughout my internal organs.  If you’re going to shoot, aim for the heart!  So… while I have not been denied health insurance, YET, I have a second round of forms to bring to said doctor so that she can fill in more damaging hearsay and destroy our chances of ever getting health insurance again.

Let this be evidence to any and all other Americans living and working in this United States: DO NOT EVER SEE A DOCTOR.  A friend recently suggested using a fake name, traveling to another city, and paying out of pocket for any tests… literally, to periodically guess at what tests might you need to check in on your health, have them done out of pocket with a fake name, and then go about doing medicine on your own.  I admit it sounded a bit too far-fetched at first glance.  But actually?  After what we have been through?  It’s the best advice I’ve heard.

Is this really the future we face by choosing to live and work in this country?

Deep breath.  Positive thinking.  It will work out.  But wait… even when we do finally manage to get some kind of coverage (our back-up option is to pay COBRA $1500/month for 18 months and then take all the agencies who denied us coverage to court) — what then?  I am frankly too terrified to enter the system again.

Can we ask doctors to see us, but not make any diagnosis?  Ever?  Can they suggest medicines and then let you go buy them in some black market?  Is it possible to have a relationship with a medical provider that is under the radar of the insurance industry?

I’m actually a bit afraid.

And you should be, too.  Do you know that insurance agencies are now compiling a numbered system that can be sold to other agencies, similar to a credit score, for health insurance?  Consider each time you see a doctor, chiropractor, mental health provider, emergency room, community clinic, or medical laboratory to be like missing a mortgage payment… it’s a hit to your score.

Ultimately, insurance is a bet.  They are betting you won’t need it.  You are betting you will.  Each time you collect on their bet is a likelihood they aren’t going to want to play with you again.  Win enough times and you get kicked out of the casino.  At what point does it make sense to not play?  How can anyone be compelled to buy insurance if it costs them a fortune to have it, another fortune to use it, and then precludes them from ever having it again?

Considering the tight wallets on working families who do not have employer benefits combined with what it really means to experience the medical insurance business system as a consumer… having health insurance doesn’t make a lot of sense.  And add that in New Orleans, you get access to better physicians if you seek care in free clinics.

I would really love to stay here, to continue to advocate for working immigrants, the poor, and the disempowered.  Our family has one heck of a lot to give to this community.  But why should we bother, really?  In the end, is there anything for us?  I’m starting to doubt it.  This really could be the last straw.  Somehow, I have to go into this doctor’s office Monday — the one where the physician herself cannot be bothered to even speak with me unless I am paying for her time — and beg and plead for help in finishing these forms in a way that suggests all of her previous “history” notes were incorrect.  Right.

Meanwhile, we continue to hope that any random problems the kids exhibit go away on their own.  As for me?  I feel so frustrated, angry, and desperate… now it’s MY fault that we are not insured.  It shouldn’t be, but there it is.  What if I were really, truly sick?  What if I had a history of mental illness?  Or a serious chronic illness?  Or had a childhood cancer?  What would be the options if anyone in our family had that kind of profile?

I think that by the end of this, both Paul and I will suffer from at least one from the list above.

All this time I’m focusing on parenting technique, when I should have been thinking about laxatives.

h/t: boingboing

As posed by Will:

“Why does Spiderman wear a suit that stops him from picking his nose?”

Kate is a few days shy of 27 months, but just officially turned 2 a few weeks ago.  Specifically, she turned 2 the day of Abeona House’s first-ever field trip.  This ambitious trip involved a walk down Oak Street to catch the newly opened Carrollton Street side of the St. Charles Streetcar, a ride to Audubon Park, catching the Audubon Zoo shuttle at the park, taking the shuttle to the Zoo, going to the Zoo, eating lunch, catching the shuttle back to the park, getting on a Streetcar, going back to Oak Street, and then walking back to Abeona House.  With 18 or so 2, 3, and 4 year olds.  I know what you are thinking.  All us parents thought it, too.

When we got to Abeona, all the kids had changed into tye-dyed t-shirts that the classes had made.  I began to do what every other parent before me had done upon arrival: change their child into the t-shirt.  Little did I know that the inside of her shirt had actually been laced with hot oil, which dripped on her body during any and all attempts to dress her.  Her tantrum, complete with “No Mommy, it hurts!”, was spectacular.  I was actually speechless, almost dizzy, at the realization of what was happening. Kate is really going to do this 2-year old THING… which means WE have to do this 2-year old thing.  AGAIN. I regained composure and readied myself for parenting.  Was the t-shirt worth a fight?  No, it wasn’t.  Experience told me there would be more important things to fight about later.  I decided to be diplomatic, a strategy that once worked with two-year old Will, and gave her the choice, “Kate do you want to wear your school t-shirt like your friends?”  “NO,” she replied.  And so it went.

My predictions of continuing struggle were completely wrong.  Actually, the trip was a rip-roaring success, thanks to the spectacular planning of the teachers and incredible karma of the Universe, which aligned all necessary steps perfectly so that there never was a hint of waiting.  The kids were incredibly well behaved.  Even Kate.  Cuteness was everywhere.  Parents bonded; one was even hit on by a Zoo employee.  We really had a fantastic time.

(That’s Kate and her teacher, Allie.)

So everything was fine.  Kate was the ONLY kid without an Abeona shirt, but this wasn’t an issue.  Until lunch time. Sitting in the shady grass at the Zoo entrance, Kate opened her lunch box and found the shirt (I packed it inside just in case she had a change of heart.)  When she found the shirt, she scrambled to put it on — over her clothes, all by herself — so quickly that she seemed almost in a panic.  And it dawned on me.  There probably wouldn’t have been a struggle that morning at all, if I had just handed her the shirt and asked her if she wanted to do it herself.  How could I have forgotten? THAT is what being 2 is all about.

I was desperate to infuse some fun into this afternoon.  It was 98 degrees in the shade, the house was struggling to keep the temp at a humid and balmy 82, and everything just felt hot and heavy.  Will came home in a foul mood and spent the first 20 minutes home in his room.  Kate was blissfully unaware of the situation and doing her best to drive him crazy.  They both were hungry.  So, I suggested we make popcorn and watch something “new” on youtube.  Goodness help me, but the first thing that came to mind was the Smurfs.

After the episode, Will asked me, “Mommy, can we watch more of the SMORES?”

“My parents called.  They said that Kate called them last night.”

“Oh?”

“Apparently, she called them and then walked around with the phone, babbling into it.  They could hear you and I talking in the background.”

“Do you think they heard us talking about naked Fridays?

“Dunno.  Maybe that’s why my Mom said they weren’t going to come over until Saturday.”

Earlier this month, Paul took off to rural New Hampshire, where in between driving firetrucks, playing with water hoses, setting up fireworks, eating flavorful grilled meat, teaching people to juggle, and riding motorcycles through the countryside, he learned all sorts of intimate knowledge about Massachusetts folk from the locals.  For example, he learned that most New Hampshire restaurants and services have two price points, a high-price printed one for those from out-of-town (read: those who have weekend homes in NH but live elsewhere) and one for locals.  While setting up the fireworks display, he had several run-ins with folks in expensive cars irritated that they couldn’t park within the out-of-bounds safety zone mandated for a community fireworks display.  When he noticed that both of the incidents involved cars with Massachusetts license plates, his friend responded, “Yup.  That’s why we call ’em Massholes.”

Awesome.  With a name like that, who wouldn’t want to go hang out with ’em?  Which is exactly what we are thrilled to be doing in October.

We’ve got a little over 3 days in Boston and have no idea what to do.  I was 5 when we moved from Billerica (a NW suburb) and only have vague memories of the library, gardens, and swan boats.  Actually, besides the day when my brother rode his Hot Wheels through the woods and into a 4-lane highway,  my best memory of Billerica is bringing our trash to the dump.  I feel that this does not necessarily reflect the character of the community but more likely speaks volumes of me.

We arrive at 3:30 on a Thursday afternoon, have Thursday evening and most of the day Friday to sight-see.  We may have a work-related meeting for Paul sometime Friday and need to check into the hotel for a 7pm cocktail hour that night.  The conference is all day Saturday.  We have all of Sunday to roam once more before flying out at 8am Monday morning.

We’d love to stay somewhere interesting/historic/romantic/notable on Thursday night, preferably reasonable walking distance from a great restaurant for dinner on Thursday and/or sights to see first thing Friday morning.  We’ll probably stay at the conference hotel Friday-Sunday, just because we leave so early Monday morning.

Suggestions for sights, itineraries, good finds, neat photo ops, and unique restaurants are very appreciated!

Yesterday, Will asked me if we have bones in our heads.  “Yes,” I told him truthfully.

“I think your head bone is broken.  I isn’t holding your hair anymore.  Maybe it’s a problem with the HAIR BONE.”  He said the last two words in all caps, clearly enunciating so that I would be sure to notice him specifically mention a particular bone, showing off his vast knowledge of the human body.  See Mommy?  I may only be 4, but I know allll about hair bones.

“You know, Will, I think that you could be very right.”

So while my hair bone is broken, the rest of my brain seems to be doing alright.  I’ve been asked to appear on a local television access channel to talk about the Schweitzer Fellowship and, I suppose, my fellowship-related work stemming from the past few years of work in the Latino community.  I have another scheduled interview tonight for my dissertation research.  This afternoon, a note appeared congratulating me for selection of a travel award to cover expenses to come to the National Schweitzer Fellows for Life Conference in Boston, and, would I mind moderating a breakout session?  All of these things are really helping me pull out of the haze and remember all the work there is to be done.

So is it so wrong to wish for a week at the beach?  Maybe I have romanticized what a week at the beach with your family is really like — but having never had the experience, I am longing to try.  This is why, in the middle of Paul negotiating new job(s), the kids popping in and out of school with different summer breaks, us preparing for a busy fall with huge travel, weddings 1000+ miles away that I am officiating and photographing, family surprises, fellowship obligations, school events, and a billion other things that don’t yet even include that darn dissertation I’m trying to finish…. I am carelessly dreaming of a week at the beach.

I blame the book.  I read a novel, the first in more time than I can remember (I’ve turned into a nonfiction reader), and although it is not on my short list of favorite books of all time, it was well-written and fun and now I just want to curl up and read and let my head escape to somewhere else.

Adding to “to do” list: find evidence that spending a week at the beach repairs broken hair bones.

Health update: it’s not my thyroid.  I paid out of pocket for the blood test and all as fine, normal, within ranges, and not consistent with any pattern of hypo- or hyper-thyroidism.

I obtained the results from the blood test done about 3 weeks ago for our life insurance plan: everything was normal.  No anemia.  No anything.  Not even borderline on anything.  Perfectly healthy.

Next step, based on sage wisdom from a brilliant MD who graciously helped with advice and orders, involves more detailed endocrine system tests… within the oversight of a local doctor.  And so, we’re back to waiting on insurance.

We pressed our insurance agent for help and he delivered… although the final answer is that Blue Cross insists on the original forms sent through the mail from our providers.  All the forms were delivered last week (where, of course, several physicians were on vacation) and so we wait.  We were smart enough to request that the forms be faxed to us before they are mailed so that we can have a record, but so far only one form has arrived.  In other words, we may be waiting awhile.

In the meantime, my hair continues to shed.

And a new dilemma: I’m afraid to have those touch-up highlights I need before going on camera!  I’ve come to terms with ‘the camera adds 10 pounds’ but cannot handle ashy-blonde roots!  But how much hair will I rish loosing in the process??