Wednesday, September 26, 2012

Book Reviews: In the Shadow of the Banyan (Ratner) and Triburbia (Greenfeld)

I confess...I've struggled to read much lately, between the back pain and other associated issues.  Though it is nice to have a nice little to-read pile waiting for me...

A Goodreads giveaway win that intrigued me for its concept and, honestly, the fact that it had a cover quote from Chris Cleave (Little Bee).  This story is narrated by Raami, a girl from a well-to-do family with royal ties in Cambodia who is seven years old when the Khmer Rouge takes over the capital and the country.  She understands very little as she flees with her family and goes through hardships that would break most people and a regime responsible for a genocide that claimed hundreds of thousands, and perhaps up to two million, lives.  Raami's world is shaken but she also finds comfort in folk tales and in stories told to her by her father.  To say much more would be to say too much, though I do recommend waiting to read too much about the author since the novel is based on her own life and it could be a form of unexpected spoiler.

It's always hard to say one enjoyed a novel like this since the story is hardly joyous, despite the young narrator's spirit.  Still, it was a very good read.  I found many interesting characters, from the various members of Raami's family to the good people who find a way to come together in the face of evil.   Raami doesn't always really understand what is going on, a state that is probably much more real than is often the case with child narrators given the fact that the author was only a little bit older when she experienced a similar journey.  I appreciate that you do see a bit of what draws some of the younger members to the Khmer Rouge regime, even while it is utterly clear to the reader that countless atrocities marked this period.  I did sometimes get a bit weary of portions of both the mother and father characters, which is largely responsible for this being four rather than five stars.

Not an easy read, but worthwhile.  

Another advance read from the folks at Harper, this book straddles the increasingly fuzzy line between novel and short-stories.  Like a few other books I've read in the past year, each chapter focuses on a different character who is connected to other chapter narrators.  Most of the main characters are men, although women and even a child do take center stage in some pieces.  All of the characters live in Tribeca, an area that had boasted an artistic vibe but grew ever-more exclusive and expensive until the recession began to impact values.  Most of the main characters do have an artistic side, although some are more dedicated than others, and the focus is on a group of fathers who meet for breakfast and are mostly tied by the fact that they drop their kids at the same well-off public school.  Underlying themes include fear surrounding an unidentified child molester, a playground hierarchy, and many struggling marriages (with a heavy dose of infidelity).

My copy lacked the map that is in the final print and might have been helpful in keeping things a bit straighter in my head.  I wanted to like this much more than I did and it did become a struggle to make myself finish this.   I do tend to feel a bit unsatisfied by short stories, but I think that can be overcome in this vignette format. There was some continuity, but these characters and stories didn't do much for me.  I can deal with imperfect characters, but it was hard to invest in anyone here....especially with the non-stop infidelity   I was interested in the thread about the already-growing hierarchy among the grade-school girls and that was really the only part that kept me going. 

I never do like giving anything below three (and think I end up staying there or higher since I do try to pick books that I'll like!), but honesty makes my good reviews more genuine -- Two stars.

Friday, September 14, 2012

The 2% (or "Not the 13 Month Update I Wanted to Give)

I confess...this is not what I hoped to share (both here and on a Back Pain forum).  Once upon a time, I made myself a promise.  I knew that the tendency is to only go online about negative results....whether it is bad service at dinner, a purchase that never worked as promised, or a failed surgical experience.  SO I was going to be different.  My surgery WOULD work....every indication was very positive....and I WOULD come back and talk about it.  Because people do NEED to see the good stories and know that there's a selection bias in posting towards the bad tales.  When surgery works, people go live their lives.  When it doesn't, they stay in posting land.

But, alas, I don't have that story to tell...

For readers who stumble on this and don't know the tale (I'm linking both for anyone reading this to learn about these issues and for my own reference)...I had an L5/S1 anterior lumbar fusion w/ BMP and titanium cages on 8/8/11.  I'd tried epidurals and PT and other such thing with no result.  The discogram (nasty test) confirmed the suspected level was an issue.  And so did the surgery....the doc said it as one of the worst discs he'd seen in years and he does fusions like dentists fill cavities (okay...maybe more like root canals).  I trusted this verdict even more b/c Dr Dad is a partner in the practice so I got pretty clear statements all along (and went out of town for it).

I had good indicators for success.  I'm 34 now, 33 at operation.  I'm not overweight.  At the time of surgery, I had solid muscle tone so even more "good weight" than average.  I do not smoke and I cannot use anti-inflammatories for other reasons....two factors that greatly increase the risk of a failed fusion.

According to Surgeon (neurosurgeon w/ heavy emphasis on low back, kinda a "Fusion King" regionally), most people progress well for 6m, have a blip that plateaus or slides a bit, but then take off in the right direction.  I did okay for the first 6m...indications said I was fusing (incl x-rays...kinda lost on how that changed) and I worked hard in PT.  I was let go from PT to keep working myself and weaned off the last meds (I have a VERY high painkiller tolerance but a LOT of withdrawal trouble).  And then it went downhill....and kept going.  By late Feb, I was spending close to 23h/day in bed and I haven't reversed that trend.  Worked with Pain Docs, one jerk, one nice, with no help.  Recently some bigger side-issues from med switches and just running down too much plus sleep troubles (a couple months waking up at most REM cycles).  Started a new physiatrist who did suggest trying my post-op brace a few hours a day....which did help.  Paused further ideas while dealing with the new side issues...

Back to Surgeon this week....13m post-op.  Saw the pic myself and it was all too clear.  I saw the cages.  And only the cages.  Not a single bit of bone.  Surgeon said that only about 2% have no growth at all with BMP (and that it was on-label use...BF saw ads about off-label suits for the cages/BMP but not relevant to me).  None of the factors that increase the risk of being in the 2% apply.  As I said to Surgeon, I don't want to be special here.

So....well, a bit of a backpedal first....I had insurance through the Ex.  He got remarried.  It was cancelled WITHOUT fact, when I called, I'd been uninsured for two weeks and they hadn't sent anything.  That IS being fixed...I'll have to do at least two months on crazy COBRA rates.  But it is slow to get it back in the system...sent the paperwork back (that they only sent AFTER i called) but not processed yet so a bit o Pause.

The plan --- Surgeon's hospital (about 3h from my home, again went far to go to trusted practice...and helped limit bills too) offers a new procedure mixing bone scan and CT that can be more definitive (though really pretty clear I didn't fuse at all).  Surgeon wants to do the test then prob plan surgery2, posterior w/ more solid hardware, screws, graft (may be marrow or bone itself).  I'm not feeling right with this doc but my inclination is to do the test and then go elsewhere for a 2nd opinion....will also be out of town b/c there are limited options here (could stay w/ family for some of treatment).  I am 95% on the 2d operation train....I cannot live like this for 50 more years.

So....yeah....not the update I planned, but the one I got.  Freakin' 2% total lack of growth.

Positives (trying!!) -- There IS a reason I never dip below a 6 and often hit an 8 or 9 on the pain scale.  The pain IS totally vindicated and VERY real.  There ARE things to look at (after a long haul being told that I was FINE and KNOWING I wasn't....that's the only place I get really pissed at the docs).  I am developing a PLAN and have some HOPE.

Still, I need a bit of wallow time....

Monday, September 10, 2012

The Value of "Us"

I confess...I have lots of theories.  Many of them are about human behavior, perhaps because I've never been the most social person so I spend a lot of time observing and processing.  I've had a difficult month with various issues piling on top of my "normal" ones, but it brought one theory to the forefront of my mind.

I think this is the type of thing I knew a long time before I had the words I wanted to express it.  Honestly, the words came during one of the tougher periods in my life, which probably isn't all that odd since those moments make people take stock in a unique way.  The words were also sparked by a random sound-bit on a television show (I'd give credit if I knew what it was). 

Here's the big picture summary:

Marriage, or a committed relationship of the same sort without the legal stamp, is about putting "Us" before "You and I."

I think any sort of relationship involves the creation of an Us, an entity separate and apart from each individual.  The romantic Us (for lack of a better way to frame it) is particularly important for many.  Ideally, the Us is a case of the whole being greater than the sum of its parts.  When you fully commit to an Us (focusing on the romantic Us, although another Us can still be utterly beautiful), you put that new entity first.  You make decisions with Us in mind, from little ones to big ones.  Sometimes valuing the Us is as simple as going to the restaurant that A is craving when B doesn't care as much.  Sometimes the Us IS valued by choosing A's wish over B's, especially in the smaller things, when A cares more at that moment.  In bigger decisions, the Us goes beyond that.  The Us is why A moves for B's job, not for B's own interest but because the move ultimately benefits the partnership as a whole and not just A or B.  A is not really "giving up" anything "for B" but rather prioritizing the Us above A him/herself.  A doesn't resent B for this, it is simply part of A's commitment to Us and the belief that valuing Us is the right choice for both A and B.

Us does not replace either participant.  A and B remain.  They remain their own selves with their own identities.  They have value, great value, beyond the Us and they should never forget that.  A and B are always distinct and they never lose themselves in Us.  Committing in a way that eliminates the self is just as toxic to a relationship as never committing at all.  Putting Us before You and I does not mean valuing Us over You and I, a concept hard to put in words but a real one nonetheless.  A must still commit to and care for A.  B must still commit to and care for A too.  Still, both are fully committed to the Us.

Preserving the Us does involve work.  It should be easy much of the time, it shouldn't always be a battle, but there will always be moments when it is hard.  Sometimes it means retreating a bit, biting your tongue to avoid words that might devastate the Us, words that are more dangerous than just those said in a fight that may anger A or B.  A strong Us can come back from slip-ups, but not from forgetting the basic commitment. 

There are Us-es (that's not an easy word to pluralize) all around.  A's relationship with every friend and family member each forms a unique, important Us.  For some, another Us may involve a relationship with a Higher Power.  Still, there's something special about one particular Us.  Not having that Us does NOT make A any less.  I know several people fully realized in themselves and their other Us-es who do not need a romantic Us.  But for those who want it, there's nothing more beautiful.

(I have my mini licensing notice on my blog but want it more on this piece -- This piece is my intellectual property.  Unauthorized use or reproduction in any form without my express, written permission is prohibitted.  Hyperlinks to this post or Confessions From a Rambling Mind are welcome.  Copyright © 2012.)

Saturday, September 1, 2012

health care hits home

I confess....I actually have a few real post ideas batting around in my head, but I'm not sure how much I can get through right now so will go more the update route.  The update actually does lead to a disturbing and apparently legal reality of the insurance world.  This is gonna be rambly...even for me...

  • The Body Stuff

I've been really struggling.  I think my body has just gotten too overwhelmed.  I did also switch off some meds and that's always a bit rough on me for some reason.  The Pain Clinic folks actually had planned on moving me on to another one but I haven't done that yet since I'm still off-kilter.  I started having these very vivid memory flashes in the overnight hours.  The best way I can explain it is like a tape recorder in my brain.  I am awake, or close to it (Pain Shrink thinks I may be in a middle-state and not fully waking, which does make sense) but I hear conversations from the past just like someone was playing a tape of the moment.  It has been an odd mix....greeting family on Thanksgiving somewhere around 2006, both before and after my back surgery, and some very hard emotional conversations that were tough enough to live through the first time.  At times, a few minutes has just run on a repeat loop.  It has interrupted my sleep and some of the memories my brain picks make me emotional and more ill. 

It is just plain odd.  Given timing, the first doc I mentioned it to was the new physiatrist (aka physical rehab docs...actually where I started with back stuff) my GP sent me to....I think he's fed up with the Pain Clinic not making progress and he likes this guy.  He was very nice but wanted to make sure I looked into the "tapes" before doing much else.  I'm in the process of doing that...and have added in sometimes hearing my own thoughts "aloud" in my talking to myself but I'm not (even harder to really explain).  I'll see someone about that stuff Thurs.  I also will go back to the physiatrist on Tues.  He's pulling an MRI to look at options and may send me a good bit away for diagnostic tests if needed.  He did recommend trying my old post-op brace a few hours a day which does seem to help. 

Things got harder this week though, so I haven't done as much of the brace time as I'd have liked.  I got really upset and stressed on Wednesday (which I'll get to in the next part).  I often get horrific headaches after getting emotional.  I think I also had a bit of a bug.  Put together with everything else, including poor sleep, I got pretty ill for a bit...."bathroom floor" kinda ill.  As a kid, I ended up in the ER several times when a belly-bug hit and I got dehydrated....I was very much going in that direction with a good 48h with no food and very little liquid.  But....

  • The Scary Insurance Stuff

The added wrinkle...the starting stressor that also exacerbated it all...I couldn't have easily gone to the ER no matter how bad it got.  Because I have no health insurance.  In fact, I hadn't had it for two weeks before X sent a note saying there might be an issue.  He got remarried....which is utterly fine by me emotionally but led to me being booted without warning.  I'd been on his insurance at a family rate, which MA law provides for after a divorce (I paid my share of the premium by sending him a check), but apparently the remarriage of either party terminates coverage.  I knew it would terminate if I got re-married, or had other access to a plan, but really never knew what would happen if he did.  I certainly never imagined the insurance company could revoke my coverage WITHOUT A WORD OF NOTICE.

It took a bit to calm down but I called within a few hours of X sending a note that HR had told him I could no longer be on the plan.  The lady was very calm and never mean but also very very clear.  I called on 8/29.  I had not had coverage since 8/16.  They had not sent any notice.  She said she would send some info and I can re-enroll.  I can also get retroactive...which I need since I had a couple doc appts the week the coverage terminated and have three more next week.  But right now, I'm uninsured. 

I know there are times and places that would have to have taken me if I showed up even without insurance, but I really got much worse with the idea that I kind of COULDN'T go to the ER for the severe health mess of the latter part of the week (sorry, that sentence is head's still not fully here).  They'd have checked when I got there and have found me uninsured.  Heck, that could have happened BEFORE I had any idea I wasn't covered.  I had to pick up some meds later in the week and CVS got a coverage rejection.   Luckily it wasn't pricey...and they can reimburse me w/o too much mess IF I can fix it w/in two weeks (not sure I can given that they just mailed the paperwork and need some signatures already).  I think the doc appts will be okay too....they don't usually run the insurance "live" like an ER or a drugstore would and hopefully the slowness of billing ends up working in my favor (they do always have you sign that you'll pay if your insurance doesn't)....two appts are places that know me so that should help too if there's a delay or I need them to re-send stuff too (more proof that you need to be nice to folks...the CVS people were super-kind and I think it helped that they know me and that I'm polite).

So...I'll have to suck it up a bit and pay a crazy premium until I find something else.  Not sure how all the continuing treatments will play in...there's been mention of a second surgery too given the total mess that is my back.  It'll be $880 per month.  I'm getting some help on that...and appreciate that help on the stress....but the whole thing makes me mad.  HOW DARE it be LEGAL to REVOKE insurance without any notification.  I won't bother thinking through X's role...whether he knew, whether he should have known...I can't ever know much there and have had folks argue both sides to me.  But I do know that it is not fair that the company's actions were all legal.  I know I am not someone who can risk being without one should HAVE to risk that but I've always made sure I didn't have even a short gap because my body has never been kind. 

I have long favored health care reform...I don't know how to do it, I don't pretend I can evaluate policy, but I know it needs to be fixed to help people protect their health without risking bankruptcy.  I know it needs to include a lot of financial reform too.  I know personal accountability also matters a lot.

And now I know it all even more. 

(again, sorry this is horridly rambly....i wish it were better since i do hope people see brain isn't fully restarted but i still need to get it out there).

P.S.  I want to get my head on straighter and my words back in shape but may put together a Change.Org petition when I do about forbidding revocation without notice.  No change in what makes revocation permissible....that'd add controversy...just a rule requiring 30 days notice before recocation, esp when it is not due to any action by the insured.  Maybe also require the insured get notice about options, even if it is a crazy premium increase, so they can make a choice before revocation rather than have to deal with it after (or be able to look at alternatives to avoid a gap...which would help make options real by preventing someone from incurring bills w/o knowing the policy has been revoked....kinda forces you to continue the old plan if you need those covered since a new plan isn't likely to give any sort of retroactive benefits).