Monday, December 17, 2012

trying to understand what is impossible to understand

I confess....I'm hesitant to even attempt this post.  I'll never say it right, I'll never not want to say more after I hit "Publish," I'll never avoid contradictions.  And I know I'll be even more rambly than normal since I'm not sure where I'm going or how I'll get there.

I'm trying to wrap my mind around the events in Newtown, Connecticut.  I suppose that's the nature of such things...there's no way to understand events that defy understanding. 

I do think there's a media element at play in mass shootings.  So many of the perpetrators of such events in recent decades spoke or wrote about "going out in a blaze of glory."  They wanted to be known, to be remembered, even if it isn't in the way most of us would elect for ourselves.  And they got what they want.  And that's wrong.  We need to look at how we report these stories.  We need to look at who we remember.  We need to stop flashing the names and stories and manifestos of these criminals on the 24/7 news coverage.  We need to say the victims names ten times for every time we mention the perpetrators. 

And yet...I clicked on the link about the neighbors shaking their heads out how the quiet boy next door turned violent.  I (we??) want to know who committed these acts.  We could talk about this without using names.  We could focus on the "who" instead of the "Who," looking at the underlying factors rather than the actual identity.  Perhaps it's "should" rather than "could."  But even if most media outlets signed a pledge to avoid identifying these killers, there'd be someone who did.  And we'd look.  I say I want to know about the shooter to try to comprehend the cause....which, again, defied comprehension....but I can't say if I/we would truly be sated with less.

Still, I hope we can at least commit to looking more at the victims.  There's so much to learn from them.  The loss of children reminds us to value our youth, to remember the beauty in being six years old.  There's also the heroism of the adults.  The amazing part about that heroism is that it wasn't planned.  The teacher who hid her students before standing face-to-face with the gunman and telling him they were elsewhere didn't have time to plot or plan.  She just did.  As good often does, as heroes often do.  I believe, I need to believe, that most people's reflexes lean towards good.  The greatest evils seem to be planned and yet, while there are many who plan bravery like our military members and first responders, so much bravery is spontaneous.  I find that comforting. 

While I didn't read much about the gunman (again, I can't deny giving in to some curiosity), I've also heard murmuring of mental health issues.  I think the state of healthcare in general is shameful.  We have amazing capabilities, but only for the very few.  Access is even more shameful when it comes to mental health.  And even more people fall through the cracks.  We need early intervention.  We need to give teachers and schools more tools to help them identify issues early and take their concerns seriously (though certainly avoid turning to a position of blame) because they are on the front lines and they see children without the filter of a parent's love.  We need to offer treatments, up to and including residential programs, and ensure they aren't reserved for those with limitless economic resources.  I do believe most mental health issues are diseases and that we need to treat them rather than demonizing them.  Treating the disease can prevent it from leading to evil. 

I'm avoiding the other issue knocking around my head.  I think we need more gun control.  But that'd be a whole post in itself.  I'm also going to resist the urge to add more each time I have a'd never end if I did.  I've rambled a bit, I've thought a lot more.  It isn't a process with an end so I'll artificially hit "Publish" soon and resist adding more each time I realize the things I forgot to write.  Instead, I want to say the names of those lost on Friday (including the first victim, shot in her home, but not including the shooter himself). 
  • Charlotte Bacon, 6;
  • Daniel Barden, 7;
  • Rachel Davino, 29;
  • Olivia Engel, 6
  • Josephine Gay, 7;
  • Ana Marquez-Greene, 6;
  • Dawn Lafferty Hochsprung, 47
  • Dylan Hockley, 6;
  • Madeleine Hsu, 6;
  • Catherine Hubbard, 6;
  • Chase Kowalski, 7;
  • Nancy Lanza, 54
  • Jesse Lewis, 6;
  • James Mattioli, 6;
  • Grace McDonnell, 7;
  • Anne Marie Murphy, 52;
  • Emilie Parker, 6;
  • Jack Pinto, 6;
  • Noah Pozner, 6;
  • Caroline Previdi, 6;
  • Jessica Rekos, 6;
  • Avielle Richman, 6;
  • Lauren Rousseau, 30;
  • Mary Sherlach, 56;
  • Victoria Soto, 27;
  • Benjamin Wheeler, 6;
  • Allison Wyatt, 6.

Friday, December 14, 2012

Winner!!! And a Quick Update....

I confess....I had to do it twice, because my first random number generator result gave the "win" to the TLC Book Tours editor.  So, I did it again and the winner of my first ever giveaway is (of course, it needs a bullet-point!):
  • Tricia from Iowa!
Congrats, Tricia, and thanks to everyone who entered (I was so worried I'd have NO replies at all and feel silly)! 

Life isn't conducive to a post right now, and it is an odd segue, but I'll update my last one and say my "mother-un-law" is progressing well and the doc says she's beating expectations after her surgery on Thursday.  She's tired and hurting, and right now swears she wouldn't have done the operation if she knew what it would entail, but I know this time will pass and she'll feel better every day.  Thursday was also a certain Rambler's birthday and I told her that I was willing to take a "hospital birthday" so long as she got well and it proved a success. 

I know that believing one will win the battle isn't the ONLY component, but both she and my Uncle prove it can be a major asset!

Wednesday, December 12, 2012

Bravery, Tenacity, Hope -- Lessons in Being a Patient

I confess...I want to share some healing thoughts and express how much I admire the determination and bravery of two people facing serious medical battles.

According to the doctors, the seizure my Uncle had a few years back was almost a good thing.  At least initially, they didn't think the two were directly related, but it alerted them to a mass in his brain.  He's battled brain cancer for the past three years, including a lot of treatments that leave him foggy and struggling physically.  He recently walked his daughter down the aisle at her lovely wedding.  He was struggling though and the docs debated whether it was worth trying another operation.  They went ahead with it and found the cancer had gotten much worse than they imagined. 

But, still, he's fighting.  They weren't sure he'd return to himself after the recent operation, but he's exceeded every expectation.  He's fighting to walk and to communicate.  He faces a tough battle, but he's working hard and committed to making the best of every moment.  He wants to live every moment of his life.

Another fighter -- I've coined the term "mother-un-law."  While I mostly use it to amuse myself, I think it is more accurate than just saying "my boyfriend's mother" since it isn't like MM and I are in the same level of boyfriend/girlfriend relationship as two sixteen year olds might be.  She introduces me as her future daughter-in-law (which does sometimes lead to an awkward moment of folks congratulating us on a still-to-come event).  MM's mom has battled a range of medical issues for many years and has faced several hospitalizations.  She recently experienced some shortness of breath and other issues that led them to do a cardiac test on Monday.  It showed significant blockages and suddenly it went from a quick in-and-out test to admitting her and planning a triple bypass.

We'd been planning on having her come visit for two weeks near Christmas but she'll face surgery tomorrow (Thurs 12/13), two days in the ICU, two weeks in the hospital, and four weeks or so in a rehab setting.  Of course, it took her by surprise and it took a bit to sink in, but she quickly committed to a great result.  She told the doctor she's going to make it home for Christmas...a goal that is probably tough to meet, but one that shows her tenacity and her commitment to beating yet another health demon.  She's a fighter and, while I'm sure she has moments of fear, she manages to keep a positive outlook.

There's a lot to learn here, a lot to admire.  I've heard more than one doctor say that commitment to healing is a key part of success, especially in very serious cases.  While I do consider myself a fighter, I'm definitely not the most positive person.  Admiration of my Uncle and MM's Mom won't immediately change that, but they are still such great role models.  I know all patients could benefit from just a fraction of their bravery. 

P.S.  Not related at all, and a bit awkward to add, but do remember my first giveaway ends 12/14.  I may be a bit delayed, but the winner should be up by Saturday night if I can't get online on Friday. 

Friday, December 7, 2012

Review & Giveaway (My First!): Confessions of Joan The Tall (Joan Cusack Handler)

I confess...I get excited when I get to be part of blogger-based events.  This is my second time as part of a "TLC Book Tours" and I want to welcome anyone who stumbled on my little corner of the internet from the group. 

This coming-of-age memoir is written in the voice of the author at age 11.  It takes the form of a journal and often feels more "spoken" than written (although, in true tween-style, Joan capitalizes and underlines for feeling and emphasis).  Joan is trying to reconcile Catholic teachings and traditions with the expanding social world of an adolescent.  She worries a lot about sin and her soul as well as about pleasing her father, whom she idolizes.  Joan's well-meaning mother tries to help her fit in socially, often through clothes.  Joan also has three siblings: a teen sister whose popularity Joan envies, a close-in-age brother who torments her, and a younger brother who is less-developed and seems to be the child at the "before" end of the adolescent spectrum.  Joan struggles a lot socially, in part because of her 5'11.5" frame and also because of a number of health woes (some likely tied to stress).

When I was approached to review this book, I asked the "tour" organizer if the book would resonate with someone who is not only not Catholic but who was raised without any real formal religion.  She confirmed that they wanted a broad range of readers.  While nothing closed the book off, I do think it would resonate more with a reader who shared the Catholic (or at least religious) upbringing.  I couldn't really relate to Joan's worrying about the fate of her soul and her concern about sin.  I do understand the desire to "be good," but it definitely went beyond my experience.  While I enjoy reading about people who lead different lives, the book really did depend on relating to the narrator and the difference made it less engrossing and made me less excited to pick up the book and return to Joan's world.

That said, there were certainly plenty of concerns I could relate to in Joan's year and also plenty of places where she made me smile.  I was never tall, but I think every adolescent feels like they stick out physically and worries over any form of difference.  I felt for Joan in her social stumblings and desire to fit in.  When the experience resonated, I could feel the particular angst of adolescence.  I also felt Joan's joy in simple triumphs and in the few moments when self-confidence began to peek through the doubt.  Joan's voice stayed consistent and genuine, more true to the age than most writers are able to stay. 

This wasn't a complete "win" for me, I'd give it three stars, but I'm glad I got to "meet" Joan and spend time with her.  I think this book would be ideal for someone who came from a very religious background and remembers reconciling that with the concerns of adolescence.  I could also see it being an interesting read for a mother and daughter to share as the girl moves into her teen years. 
The folks at TLC Book Tours have given me the nod to offer a copy of Confessions of Joan the Tall to one of my readers.  To enter, please comment on this post with your first name and your state.  If you aren't someone I know offline, I'd love to also know how you stumbled on the blog. 

I'll announce a winner (using a random number generator to pick) on Friday December 14th.  Check back here to see if you win (or leave your email address in the text of the comment and I'll notify you if you win...I can't always seem to get Blogger to tell me commenter email addresses). 

For the full list of blog tour stops and more information on the book and its author, see the TLC Book Tours website.

Tuesday, December 4, 2012

Sharing the Journey - Endo Syptoms & Diagnosis

I confess....when I started this blog, I certainly knew I was likely to ramble on about many a random topic (hence the name!).  I did, however, expect to have a few frequent threads including thoughts on health and fitness.  Life took a turn and the gym-rat has been in hibernation for quite some time, while health has taken even more of my mind with the back pain journey. 

I expected, however, to talk a lot more about dealing with endometriosis.   While I joke that the back pain "cured" the endo, it is still a part of my world in many ways.  I promised myself long ago that I'd talk openly about endo in the hopes of helping at least one other woman either feel less alone or helping find her way to a diagnosis.  This post is about the latter...about the symptoms I ignored and the process of getting to a formal diagnosis.  And, yes, it'll have some more detail than some folks might like to hear, but I think that detail is what could help someone recognize the symptoms in her own life. 
  • Signs & Symptoms
I was never one of those girls who wanted their period.  It always sounded like a hassle.  I wasn't happy the day it came and I definitely didn't enjoy sharing the "news" with my mom.  She was excited for both of us....and called EVERYONE...okay, maybe it just FELT like everyone, but I didn't really want to spread the word.  I was 13. 

My mom had "warned" me that it'd likely be heavy.  It wasn't so "bad" at first, but it got heavier with time.  And even in the early days it was more than I think is typical, although I've definitely heard stories of women with "worse" (these are the words that feel right, I keep using the quotes because I dislike the negativity, but I'm going to stop since endo IS negative....even if menstruation is natural and normal).  My periods always lasted 6 or 7 days.  I made a change to tampons because pads gave me a rash and there were times when I'd have leakage problems after less than an hour, even with the higher absorbency options.  Nighttime was pretty awful and I was often too worried about needing to change to sleep much.  Sometimes I'd set an alarm to go off every two hours so I could at least nap between bathroom trips.  My OB bill (my favorite, in part b/c I could easily carry a large number without having to bring a tote bag) was insane. 

And then there's the cramps....a word that doesn't even cover the pain I eventually had.  My mom had said that "we" were lucky and didn't get pain....and I didn't at first.  It built gradually, almost sneaking up on me.  I can't recall when it first hit, but I remember trying Midol at some point in college.  It got bad around age 20, seven years after I hit puberty.  Around that time, I'd have at least one day when the OTC meds didn't help at all and I had trouble functioning.  In grad school, it became my norm to end up in the fetal position for a good chunk of the first few days.  Eventually, the pain not only got worse but stopped being confined to a couple of days a month, first starting a few days before my period and lasting the duration.  Then, in a fairly sudden leap from there, it never stopped.  And one day I passed out from the pain at work.  I fell out of my chair and my secretary put me in a cab.  And I finally spoke up.

Before I move on, I'll add a short mention of the "least spoken" side.  Sex can hurt (and treatment via continuous birth control can severely hurt libido).  At times, I'd have severe cramping for days after.  I'm happy to "talk" more about this side via email to any women with questions but want to limit what I write out of respect for others in my life.
  • Diagnosis
Once I "spoke up", endo was mentioned fairly quickly (which isn't always the case...).  I just knew that was the right diagnosis the first time I read about it.  However, endo can only be diagnosed via surgery so it isn't the first thing they check for when a woman is experiencing severe pelvic pain.  I went between my GP and GYN for months doing tests, especially because the pain wasn't confined to my period (I think that's a bit unusual, but not unheard of).  I had a lot of different tests, including a number looking at gastrointestinal issues.  Despite the fact that I'd waited so long to speak up (or maybe because my journey had already been long), I wanted a label and a reason "NOW" once I did.  I remember going in for a pelvic ultrasound and feeling conflicted...I wanted an ANSWER so a "negative result" was hard to hear even though I knew it was a really good thing since some of the potential diagnoses would have been pretty severe (i.e. uterine cancer).

After eliminating some "easier to diagnose" possibilities, we scheduled the surgery.  A pelvic laproscopy is a relatively minor surgery, but it is still surgery.  I wasn't too worried about it though, I was really just glad to be moving ahead.  I actually "failed" my first pre-op check...they do a check-up before doing non-emergency surgeries and will postpone if you are ill (I ended up failing quite spectacularly since I developed walking pneumonia with the first hints showing the day I went for the pre-op appointment).  When the surgery finally came about, I was more nervous about the answer than the procedure.  When I woke up, other told me that they did find endo and the doc called me after I got home to confirm (he was gone when I woke but we had a follow-up planned and he did call that night).

In many ways, endo is a frustrating diagnosis since it is a chronic and incurable condition.  However, for me at least, just having a name can help someone feel a little less lost and a little more "recognized" she isn't insane or just complaining too much.  For me, taking the pill continuously (i.e. no inactive week, no period) has been a big help, but it is far from a cure.  I do still have pain, sometimes severe.  I've had two more laproscopies since the first one...they also try to remove painful tissue growths, so it is used to treat in addition to being used to diagnose. 
  • Moving Ahead
While I know what I experienced...what I still experience...isn't "normal" (like I assumed at first), I also know I'm not alone. It is part of my daily life, at least in the daily pill, but I have learned to live with it and it is MUCH more under control. .  Endo can be disabilitating, but it isn't always and identifying it is a key step to living with it (and, hopefully, keeping the symptoms at bay). 

I've met some great women, many online, who inspire me and who make me feel understood.  If I can be that for someone else, then there will be a positive to my journey.  Please do email me (brand new, blog-focused email address in the right-hand column) if I can answer a question or just provide support. 

  • P.S. 
I started this post on Monday, finished Tues around one (it is now Tues 11PM).  I started to get some cramping in the afternoon, wondered if it was just on my mind so feeling it more (sometimes it hides under the back pain...just not my focus point but does sometime hurt).  I found myself feeling weepy.  Later, I got spotting.  Turns out -- when I assembled my weekly pill case, I somehow missed the BCP (maybe the 2nd time this has happened & I accidentally missed more than a day).  I wonder if my body already felt "different" since, even when I'd only missed one pill (Sunday night's), I felt the NEED to do an endo post. 

Took the Tues pill this evening (saving Su & M...more than once i've dropped and lost a pill so good to have extras of the tiny things!).  Didn't double-up since that makes me feel ill and there's really no need (since normal use has a week off every month, two days in like a year isn't an issue in "regular" functioning of the pill).  Already a good bit of cramping but I think I headed it off.  Plus, I assume the regimen for my back pain is helping with the potential pelvic pain.  In a way, it IS good to know things still function...I know bleeding on the pill is NOT a real period, but it still seems like a positive sign that the spotting hit when it should...shouldn't go beyond that (and I did get much lighter on the "ordinary" pill regime, it also helped confine the duration of cramping, but the pain was still too high).

Monday, December 3, 2012

Gettin' Fancy

I confess....this is just a mini-post to mention that I've added an email address for my blog.  I had a comment a little while back where the person had looked to contact me.  I have no doubt someone could find me if they really wanted to, but prefer not to just post my normal email address outright.  There's a new "Contact" box on the right, but my new blog-focused email is: (yes, it took a zillion and a half tries to find a variation that wasn't taken!). 

Now I just need to get used to checking it!

Friday, November 30, 2012

Bullet-Point, Junior: Doc Update, New Toys (Roomba & Tempurpedic), & OnDemand Add (Shark Tank)

I confess...a few little things running through the Rambler's head....

  • Doc update -- I'm not up for going in-depth, but I saw a new neurosurgeon this week.  He's ordering a CAT scan which I can have done here in the State College area and then he'll call to talk a bit (he's in Philly).  He did mention a follow-up surgery that would go in through the back and use more hardware.  Of course, he said a lot of the "I can't say it'll help" stuff, which I know he kinda needs t do.  He did all but call my results "weird" and definitely said it was really unusual (and utterly random, along the same "who knows why" lines).
  • MM and I had been talking about it for a while but kinda randomly ended up in a mattress store a few weeks ago.  Our new Tempurpedeic arrived on Wednesday.  It definitely doesn't feel quite as heavenly as the store one yet but they say it can take some "breaking in" (people mention jumping up and down on them as part of the process!).  Hopefully it'll prove a good buy.  Love that they gave us a military discount (which we asked about) and an "owie"-discount (or "medical discount", which we didn't ask about and they offered since I did have my brace and we mentioned the issues I've had).
  • We also got some early holiday gifts during out Thanksgiving travels.  Totally in love with our I-Robot Roomba.  Alternatively called "R2D2" and "the puppy," it's a really good addition to our home, especially since I really can't contribute much to housecleaning. 
  • An addition to my OnDemand rotation is Shark Tank, an ABC show where inventors pitch products to investors.   Love that it is easy to watch out of order, hence being a good OnDemand fit.  Interesting side note from a quick browse: those who appear have to give five percent equity to Mark Burnett Productions. 
  • They time the holidays quite well to follow after election ads end.

Sunday, November 25, 2012

Thank "You", Love "Us" -- For My Support Team and Every Person Who Battlles Alongside the Chronic Pain Patient

I confess...I have lots of posts rattling around my head about life with chronic pain.  I feel like a one-trick pony at times (okay, two tricks...I post book reviews too...), but it is a pretty dominant force in my life.  I also truly believe that it is important to talk and be open about illness and hold on to a hope that an entry makes just one person feel less alone.

It is a bit belated, but I'd like to ramble about what it means to have good, supportive folks in your life.  Before I do, I feel compelled to "drop a footnote" or two (and to then note this clearly isn't an actual footnote).  First, every person is unique and has a unique experience of illness.  I do believe that there are a lot of things that apply to many of "us" so I often write from what I think is common, oft-shared ground.  My posts may just refer to a generic pain/illness patient, and I may throw in a lot of "we"s, but I do know not every patient would agree with every thought.  Second, I know that there are degrees of chronic ailments.  My chronic pain is tough, and I'm quite prepared by now to label it fairly severe without questioning if I'm too sensitive (which is a post itself since it took work to dismiss the inner and outer voices calling me a "wimp"), but it isn't fatal.  There are people with much tougher burdens, much harder roads.  I can fall into a lot of guilt about complaining when there are people facing greater fights, but I try to remember (and to remind others) that the fact that some may have it worse doesn't mean the struggles of a pain patient are any less.  

With all that said...

This is a post for all those people who support all of the long-term patients.  It is for every person who has ever sat in the "visitor's chair" in a doctor's office or been unable to go along but heard a loved one report on yet another frustrating medical visit.  It is for everyone who has sent healing thoughts (or prayers if they practice that form of faith).  It is for everyone who watches and sees and supports and loves.... 

As patients, "we" may often dwell on the troubles of our bodies, it is hard not to be overwhelmed by pain and illness, but we still see our blessings.  We appreciate and we are thankful for all of the people who give us love and support on our difficult journeys.  We see it in the "big" supporters, the front-line troops, like partners and families and the closest of friends.  And we see it in the rest of our team, like the friend who sends a hug in response to a "rough day" update on Facebook and the neighbor who carries up a trashcan or offers a hand with groceries. 

We know that illness or chronic pain affects more than just the patient.  We know our limitations can become our loved one's limitations too when it means we can't just leap (even figuratively!) at the suggestion of a day trip or even a dinner out.  We know people give things up for us.  We know that our support team choose to take this as part of the "package" and we do understand that there are moments when the "work" of taking on our battles is hard and when "you" get frustrated with what it all entails.  And that's okay...we "get" it and it makes us appreciate you even more for choosing to be our teammates and stay with us through the fight.  You can be honest about thit being hard, we know it is.  And we hope you have support in being our support....whether through venting to your own "team," reading the stories of other "pain patient supporters," or even a more formal support professional.

We appreciate all the gestures, both big and small.  While the big ones may get the most attention, it is the little ones that really and truly help us on our journeys.  A simple hand to help us up from a seat or across unstable ground.  Or a gentle hand on our arm to let us know we aren't alone when you see the pain take over and "win" despite our attempt to fight it (and the fact that you know us well enough to see when a pain spike strikes).  We may not say it every day.  We'd run out of words if we said it every time we felt appreciation for all you do.

An important note that is at once a simple thought and a very complex one -- We know you can't "fix" it.  We know you want to and that this can be especially taxing on parents and partners (I'll even go gender-specific and say men are taught to be problem-solvers and many are frustrated at not being able to solve a girlfriend/wife's pain).  We know many of you would take it for us if you could and would sacrifice greatly if it meant a cure.  Know that we love you for wanting to solve it but know we don't expect you to do so.  We know you know it too, and that knowing you can't fix it might be the hardest thing about being a support person.  But please know this too, whether you are a partner, a family member, a friend, or another ally -- you DO help.  Every single day....even the worst ones when we can't see beyond the moment and when it feels like the pain or the illness is winning and will never cease...we see you and we love you for being there (even from afar).

Thank "you" -- Love, "us"

Monday, November 19, 2012

Medical Update #3475

I confess....I estimated on the number of medical updates I've made.  I've got all these thoughts for other blog posts, but I feel pretty low energy of late.  I also feel like this blog helps me keep a bit of a journal of this medical saga that might help me someday and that might also help someone else feel a bit less alone if they recognize elements of their own fight.  Even with the world's best support team, chronic pain is a lonely world. 

Things have been pretty status quo.  I can't say I'm "used" to the pain, but it just feels like it has been my reality for a long time and there's not much "new" in that world.   I wear a brace for the most part when I'm out of bed which helps me feel a bit more stable but the pain is still rough.  The brace is big and bulky and sometimes it feels embarrassing, especially after catching a glimpse of the back view in a 3-way mirror at a store.  I do feel like it is useful to have at times, such as when I'm at the grocery store, as a bit of a warning to the world (though very few people seem to think to offer help to the poor girl with the obvious back issue).  I changed the wording of that parenthetical a few times...truth it that the right phrase is "obvious disability"....or "obvious partial disability"...but that's a blow to the ego to write even if I know it is the current truth (and hope beyond hope that it is a "temporary" categorization).

My body definitely protests if I push too hard....I'll go from in pain to feeling very nauseous and a bit dizzy, not unlike a bad bout of motion sickness.  Long periods in the car are a particular struggle since sitting puts a lot of pressure on the low back and it is harder in the car where your ability to readjust is more limited.  It was also a fight to make it through a family wedding recently (but it was a lovely wedding and I'm glad I could be a part of it!).  I'm pretty sure I looked like I had too much to drink, even though I had maybe three glasses of wine in a four hour span. My eyes look "off" in a picture from later in the night but I swear I needed a bed and hot shower more than anything else.  It's odd how pain forms on one's face....sometimes I shake like a leaf and people think I'm cold and other times I look a bit "vacant" because I just can't focus beyond the physical struggle. 

The light on the horizon -- I've got an appointment to see a new spine doc on 11/27. He's in Philly with Thomas Jefferson and came with recommendations from a few different sources.  So, crossing my fingers that this doc holds out some hope and helps me see a plan.  I'm expecting it to be another surgery and I'm honestly beyond fine with that -- even setting a date will feel like I've got some wheels in motion.  Lately it too often feels like this is just where I'm at and where I'm going to be and that's not a good feeling.  Send good thoughts at 2PM on the post-Turkey Tuesday (or maybe closer to 3 if the doc's the type to run late!).

Friday, November 16, 2012

Slow 'n' Steady Reader -- Buried on Avenue B (de Jonge) & The Orchadist (Coplin)

I confess....I feel like a slowpoke lately, and I don't recall ever letting my "to read" pile getting over two books, but I'm still reading when my mind beats out my body and lets me focus.

A Harper read (free in exchange for an honest review) and another venture into detective/mystery lit.  I do enjoy them from time t time, but will admit to being a bit of a harder sell than some since it isn't my go-to genre.  This is apparently the second in a series, although (as I find common and a benefit to the genre) it isn't at all a drawback to have missed the first installment.  The main character is a flawed female detective with a focus on murder investigations.  A rumor leads her to dig up part of a community garden, to the chagrin of leadership in her squad, and the unexpected result sends her hunting not only a killer but an unidentified victim.

This sits between a 2 and a 2.5 star read (of 5).  I found myself intrigued about the victim but the story just dragged and got a bit too confused at times.  There were also too many coincidences, a definite personal pet peeve.  At times I found the detective character interesting but then she'd lose my interest and I felt like there were elements that got dropped.  I picked in up with interest in the early-going but was more than ready for it to end. 
Sometimes it is dangerous for a book to sit in my pile a bit, especially one that interests me.  Too much expectation has hurt many a book or a movie.  This one (also from Harper, copy in exchange for an honest review), however, stood up to my expectation and earned a solid 4.5 stars that I'm happy to round up.

Talmadge has lived alone since losing both his mother and sister by the time he was in his mid-teens.  He lives on a vast orchard, in the Pacific Northwest near the turn of the twentieth century.  His life takes a turn when he spots two young teens, both very pregnant, who first steal a couple apples at market and later begin to live on his land.  Slowly, Talmadge gains their trust and becomes involved in their world including their flight from an abusive brothel owner with a special interest in one of the girls.  As is the case with some books, I'm hesitant to say much more since it is a wonderful story to watch unfold.

I loved this book.  It is gives a wonderful set of characters including Talmadge, the girls, a Native American mute, and an herbalist/midwife.  Additionally, it is a novel of place, with a great sense of both time and location.  The language is lovely and kept me held throughout.  The only hesitation on the last half-star is that I felt unsure about some of the turns it took in the latter part....not a true complaint, and I wouldn't say it is out of character, but it still just felt a bit "off" to me.  I think part was that I wanted to focus on a character other than the one who dominated the progress of the late plot. 

Still, a wonderful read.  Recommended for book lovers who love to fall into a setting and the characters that inhabit the fictional world.  Lovely prose.  I'd love to see more but one can feel that eight years that went into it and I'll happily wait for such art. 

Wednesday, November 7, 2012

on politics and community

I confess....once upon a time, I did my share of political work including manning the phones and pamphlet-dropping from door-to-door.  I think politics can bring out a great energy in people who feel passionately about a candidate or an issue.  There's an element of the process that is the epitome of American citizenship.  There's spirit, belief, and hope. 

And, then, there's the rest.  The vitriol on both sides seems to get worse with each passing year.  The "other" candidate and the folks supporting him (intended as gender-neutral) are labelled with the same words that once composed schoolyard taunts.  It starts from the top, with ads that we all know are more closely associated with the campaigns than fundraising-centered separations would suggest.  And it passes down, including to people I greatly admire and whose passion I applaud but who seem to forget their manners.  I know studies show negative campaiging does get results, but I also know I'm not the only one who stops listening when it moves from constructive difference to name-calling and bullying

There is a lot that divides us.  Absolutely.  But I really do believe most people, and most candidates, do have good intentions.  We have different ways of getting there, but we all want our country and our society to succeed.  I'm not blind to the fact that some positions do involve, for lack of a more productive word, hate.  I absolutely see the anger this evokes in those labelled as "other"...and it is an anger I feel with them.  Still, somehow, I still do think the beliefs stem from someplace genuine, a place that truly believe theirs is the path to a better future.

I felt moments of hope in the wake of the tragic storm when even politicians cast politics aside for the greater good.  Chris Christie gained a lot of admiration in my book for refusing to focus on the election when his citizens were suffering.  Watching neighbors share electric outlets and marathoners take disappointment and turn to charity gave me hope.  I knew it would be short-lived given the timing of things, but I hope it comes back.  And I truly hope that one day we'll find a way to capture that camaraderie and sense of community without needing a tragedy to inspire it.

Friday, November 2, 2012

sending dry thoughts....

I confess...still in awe of the power of a storm.  I had ideas in my head to write about, but they can come later.  I've often noted this part of the country gets a little bit of everything in terms of weather, but it usually doesn't get as severe as it can in other parts of the nation.  We get heat waves, but not like the Southwest.  We get snow, but not like parts of the Midwest.  And we've gotten the remnants of some hurricanes, but not like places in the South/Southeast.  Until now. 

We're in Central PA.  It was a nasty storm but nothing unheard of and no lasting effects.  We got a little bit of spotty water in the basement...probably more than in other storms but nothing more than wet spots and nothing damaged.

My cousin is getting married on 11/11.  She and her fiance live in Hoboken.  Per my Mom, the National Guard helped them get out and they went to my Aunt/Uncle's place.  That house didn't have power, but it was dry.  Luckily, it seems much of the wedding stuff was stored there rather than the bride' apartment.  My Aunt and Uncle stayed in a hotel for at least a night or two.  They got power last night.  I haven't heard about  how the wedding site fared, but imagine it is up and running since everything seems to be going forward as planned.

I also heard extra voices when I called home this morning.  My step-sister's family had no power in Princeton so went to stay there (Bucks County, southeast PA).  The two adults are trying to take care of some things today, two younger kids (one early teens, other around age 7) are with my Mom and step-dad (older girl stayed w/ a friend instead).  Definitely sounded louder than normal there.

So, everyone is safe and getting through, even if there's crowding here and there.  Hoping all of my readers and their loved ones are safe and sound. 

Wednesday, October 31, 2012

blogging and bullet-pointing

I confess.....I'm hoping to start posting more.  I enjoy it and hope some folks enjoy reading it, but I've struggled with energy and focus of late.  It takes a lot to get through my ghost-blog posts I do for some extra cash and I feel exhausted by even a little bit of writing etc.  But I know I rise to goals so I'm going to post more....not ready to commit to a schedule (though I have a cute idea for a three times a week plan), but just a general goal.  I also plan to play with the formatting a bit.

I do want to create an email address for the blog too.  I have no doubt folks could find me if they really wanted to but prefer not to use my name or "real" email address.  I'll add it in here when I have it set and will also put it on a sidebar or some other part of the template.
I don't want to follow that with a particular pondering, but I can't consider this a real post as it so.....

  • I'm moving slowly through The Orchardist.  It is excellent.  The setting is a rural part of the Pacific Midwest right around the turn of the twentieth century.  I'll share more when I review it, but it has an epic quality, an amazing sense of place, and interesting characters. 
  • I wandered into a bottle of Wen.  I kinda like it but it is pricey and goes fast.  I do not have anything except for the cleansing conditioner so I don't know how the products complement each other.  I do need an extra anti-frizz cream if I blow--dry shortly after showering (vs the days I don't go out so tuck up wet and only dry when I get cold).  I'd love to try to full set if the Wen folks insist.....:P
  • I had been disappointed to not get a particular book after a couple tries in Goodreads giveaways.  On a whim, I emailed someone involved w/ press for the book noting that I do have experience in book reviewing and also telling a bit of my story (i.e. long term pain making work impossible so not really paying for books).  She didn't reply so I chalked it up to "worth a try" until last week when I opened the door one day and found the book on my stoop.  I sent a thank you note and look forward to reading it!
  • I also got a note here inviting me to do another TLC Book Tour.  I've done them before and think they are cool....basically they have a bunch of reviewers post on a schedule so one goes up each day for a given period. 
  • Working on getting in to someone good to look at my file and then hopefully do a successful revision surgery.  I've tried some additional pain control paths w/o much luck and have kinda accepted it will hurt till I get through operation #2.
  • TLC programing is evil.  I can't stop.  It started as treadmill fare (best stuff for walking is light, hold your attention, but not too serious or hard to follow since I'd def miss the important piece of evidence etc). but I catch more What Not to Wear and Four Weddings than I'll admit (kinda worn out on Say Yes to the Dress).  I hate to admit also failing to look away when I flipped channels during the treadmill time and hit Honey Boo Boo (annoying, but they show such love for their family and appear really sure of who they really are) and Breaking Amish (less into the drama, more the idea of new eyes on the world....though it sounds like it is pretty darn fake).

Wednesday, October 17, 2012

"health" information, or lack thereof

I confess....I want to rant a bit about what passes for information on the Internet.  At least I can promise the rant is NOT about politics!

I consider myself a pretty savvy consumer of health-related information.  I've absolutely used Internet sites to further understand health issues, especially given my multitude of medical issues and pharmacy frequent shopper status.  I understand that there are many reputable sites out there and many that simply are not trustworthy, often because they are advertising in disguise.

This can be especially true in the weight-related arena (though there are plenty of offline offenders too).  However, I feel like a site directly affiliated with a hospital should be information-positive.  So today's experience inspired a rant....

I know that there are many indicators of healthy weight and body composition.  I know any set of numbers is more about averages than individuals, hence the muscled athletes labeled obese by the BMI charts.  I've long heard that weight-hip ratio is a really important stat but really never taken out a tape measure simply because I have enough to obsess over.  However, a while back I needed the numbers to order a dress and decided to explore the results a bit.  My quick Google search on waist-hip ratio info gave many results that raised my radar and that I didn't bother clicking on.  I chose one with a direct tie to a hospital, though I frankly forget which one.

I could beat around the bush, but it's easier to just put the numbers out there.  My bust/waist/hip numbers were 34/28/34 (which, in the wonders of women's clothing, meant I needed a size 4, 8 and 0 all at once).  It didn't ask, but I'll be upfront for the sake of context here....I'm around 118-120lbs and 5'4".  According to the waist-hip calculator, I need to lose weight in order to protect my health.

Okay.  I may be body-conscious, but I know that's not true.  That's not to say I'm at my healthiest.  I actually felt my best around the weight I am now, but I had a lot more muscle at the time.  I know the shift in composition is due to my physical issues, not any lack of motivation.  Actually, in a semi-relevant vein, the recent health results made me feel more assured of my instinct that I wasn't in the place for weight training work right now.  It very well might be accurate to say a shift in body composition would be health-positive, but it simply isn't right to say I need to shed pure pounds to be healthy. 

My ratio is partly a factor of what I can and cannot do right now but also, probably more accurately, a simple fact of genetics.  I just am not a curvy gal.  I get that the calculator ultimately looked at ratios, not actual numbers on the tape measure, but one would think a hospital site would either factor in both or make a more clear statement about what the results mean.  I've read enough to know that the genetic tendency to carry weight in certain areas can, regardless of numbers on the scale, predict health outcomes and it is not bad to be aware of that.  Still, it angers me when a site associated with a medical institution can't bother to explain that rather than make a blanket statement...especially when the ratio is partly about using something other than the scale to evaluate health.  I feel the same way when a BMI calculator fails to note that muscle mass can lead to less useful results.  With different information under my belt, it could have sent me into a body image tailspin.   

I'm a savvy health consumer, and treading on the Internet always requires some amount of information awareness (a topic we really should teach more in schools...I know my teachers did discuss source-awareness but it isn't taught enough).  Caveat emptor...or something like it...but it is ridiculous that someone who knows enough to look for a hospital-affiliated site might still come away with poor guidance.

P.S.  I'm going to work hard to not let myself feel somehow bad about the personal stats in this post....the rational side of me knows my rant is no less valid because I can wear a size small. 

Wednesday, October 10, 2012

the bullet points return!

I confess....I'm overdue for a bit of bullet-point rambling....
  • I'll be happy when the election is over and there are fewer divisive Facebook feeds.  I certainly could un-follow folks for the short-term so it really isn't anyone else's fault.  Politics does not always bring out the best in folks. Being in a "mixed" relationship is also tougher during the election season.  Gotta bite our tongues a lot and "obey the mat!"
  • REM sleep is a good thing.  My brain has decided to interrupt it a lot & that's challenging.
  • I've been wearing my brace and I can get out a bit on the weekends.  I do end up paying for it is I do more than 2 hours or so, and I definitely need to save the energy during the week to "spend" it on the weekend, but it is still good to play human occasionally.
  • On that note, my cousin's wedding is next month (11/11).  Looking forward to it but nervous about the long day.  I've been told there are couches in niches throughout where I can hide and may even be able to nap in the bride's dressing room if it gets to that point (though I'd rather leave the bride her space!).  I'm a bridesmaid so the dress is set & I got more reasonable shoes than I wore last wedding so I'm not as worried about falling on my butt!  There'll be flip-flops stashed in a tote for post-ceremony/post-photo needs.  Bride kindly said she wouldn't care at all if I wore them the whole time, but I can handle a short spell in the nice shoes,  Honestly, it'll be a bit of work either way (extra meds may be in that tote too) so may as well be photo-ready!
  • I've requested that our local supermarket carry my beloved Oatmeal Cookie Chunk.  Until then, Rocky Road-ish is my indulgence of choice.

  • PA wine stores have a limited stock since they are tightly state managed.  I was thrilled to find Renwood Barbera is a new addition.  I had it years ago & could never find it again.  I'm a fan of big reds so not everyone agrees with my picks, but I find this easy to drink & quite tasty. 

  • I do miss being able to do some more blogging (and feel an odd need to add random pics today), but I am sticking to the advice to mind my limits.  Some days that's just paying a bill, calling a doc about paperwork, & a bit of my own paperwork.  I need to just be okay with that.
  • I am still doing the ghost-blogging...writing six posts (three each for two firm) a week, 500+ words on a relevant news story w/ a spin on applicable law or some other applicable topic. Sometimes it is tough to find a topic, especially for the smaller market one since there are limited news stories to use as a starter, and sometimes it takes way longer than it should (normal - 90min, worst - nearly 5h), but I like that I can say I'm a writer. I have not been able to do more pieces for the local freebie paper since my contact was ousted as editor, but hopefully that will change in time.
  • MM needed his "fun car" inspected and had a few time issues.  I was beyond nervous, but I can now say I've been behind the wheel of a Corvette.  I suppose it is telling that my favorite part was the heads-up display (speed is displayed on the windshield).  I think folks were baffled by a black sports car staying under the speed limit!

  • How did I end up watching What Not to Wear?  It's mostly treadmill fare and all reruns.  How come no one makes over a wardrobe for a gal whose clothes are acceptable but who still could use some guidance on what flatters her frame?  I  can add in a story about having lost all my beloved muscle tone, esp missing my toned tris, to give it interest.
  • I got a "real phone"...texting, Internet, and all the like.  Love that I can deposit checks with it (using our secure home internet) since BOA is everywhere but in the State College region.  I had been good about using a guided relaxation app too for a while..fallen off that wagon but will get back on eventually since it was definitely good and Pain Shrink is a fan of such apps.
  • Lots of other stuff coming up....MM's family event, the aforementioned wedding, Turkey Day...deep breaths and a reminder that giving myself the rest I need is vital to making it through busy times.

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).

Friday, August 17, 2012

still reading!! Prisoner of Heaven & The Virgin Cure

Ever So Slow, But They WILL Get Posted --
Assorted playing with medicines, some causing problems that gummed up my brain and then got off it which fiddled with my brain an body more.  So my "to read for review" pile is big and there are a couple in the "read but not reviewed"....always a challenge when it gets delayed too much and I lose the initial "feel" of the book. 

But, I've got a bit of time...oddly post-Ambien, pre-it-kicking-in (1-2h) for me is ofter my clearest time of day.  So....

This is the third piece of a four book series that definitely isn't in a true linear fashion.  I'd read the first book (The Shadow of the Wind) but not the second (a prequel, The Angel's Game).  PoH occurs after Shadow but much of it tells a story that I think connects the plots and people of the to prior books and lets them overlap.  I may reference things that would be a spoiler to Shadow...I might for Angel's but can't that's the best warning I can give.

Daniel works in his father's bookshop.  He and his wife, Bea, live upstairs with their baby boy.  Fermin works in the store and has a much deeper relationship making him close to family (though more of how that came to be is in this book).  A man comes and buys a pricey book and asks Daniel to take it, with an inscription, to Fermin.  The eventually leads Fermin to share the story of his time in prision (in an era with a "thought police" piece of the culture).  He meets folks there and we also see how he gets from the prison to the time he met Daniel.

I very much enjoyed Shadow....I gave it 4 stars but didn't write any details.  I think it was kinda an easy one to "grab" me since a big feature is a huge, hidden library called the Cemetary of Forgotten Books.  The book he picks motivates much of his role in the book.  There's also a lot of intrigue and mystery about motives and connections...I didn't DISLIKE that, but it wasn't the draw.

This book is good.  It is a lot about how we become who we are with a prision holding some innocent folks, some thinkers/writers, and some who just plain did the crime.  There's a lot of questions of love and loyalty in there.  The past story, and remedying a situation it created, is crucial to moving Fermin ahead in his life and starting his marriage. 

But, still, it didn't truly grab me.  Not sure if I'd have read it w/o the Shadow experience (and know idea how it might have mattered if I read Angel's).  Taking it as its own book...3 stars.  It is intriguing with a push on the role of gov't and intellectualism.  I do like that stuff, but it really never captured me fully.  Still, regards and thanks to Harper for the copy!

This was one I was excited to be offered by Harper and hopped right on the request a review copy.  Part of that could be it might be one I'd feel odd buying...that's not "right" but it is honest....I think it was about the idea of marketing a book about a culture that marketed young girls (though, certainly worth knowing this stuff is in the country's past).  But I def wanted to read it given that I later followed-up and happy to see more become availale since I hadn't been able to snag one at first.

Moth is living with her mother in a rough, poor, slum in 1871.  She was pretty sure her mom would eventually sell her into service but thought she had a little longer and was just woken up and taken off at age twelve.  The woman she is taken to becomes increasingly abusive, with concern escalating that it might get worse.  She escapes with help of one friendly, kind person.

Moth ends up on the street.  She tries a little stealing and a lot of begging and eventually meets a girl who takes her to the home of Mrs Everett.  This is pretty much a training brothel.  The girls spend time learning the art of being a good date to a wealthy man, both in terms of being a partner at public events and in the home's sitting room.  The plan is for one man to eventually pay a large sum for the chance to take her virginity.  The girls dream that this will be about love, and that they'll find a man who'll eventually take them in (or at least after a few more "clients"...fee is lower for non-firsts). 

Not hard to imagine, the glamour of the clothes and social life draw her (and others in).  Also, not surprising from our view, it is never that simple.  One big risk, that gives the title, is that some believe that sex with a virgin will cure STDs (even though Mrs Everrett promises that is not a worry in her home). 

I liked this.  I do feel like there are a lot of places that I wanted more (the friend who helped her escape the prior job, some of the girls in the house).  Dr Sadie is a woman doc who tends to the girls at the house and tries to talk them out of it....I'd like much more of her, although we do get some shots of her life).  

Honestly, right now I'm feeling like a 4 but I am 90% sure I was at 3.5 (and maybe even 3) before.  So I'll go 3.5 and round up simply b/c it stuck with me a bit.  I think part of the lower initial rank was not feeling drawn to it nightly, but that's appeared to come on the far end.  Portrait of a tough time that's not nearly so distant as it sounds (and is still part of lives in some places...including, in various forms, in the U.S

Friday, August 3, 2012

checking in: weak, worn out, but okay...and a recommendation to others with chronic pain

I confess...things have been rough.  The pain has been insane.  Constant, take-your-breath-away, 9 of 10 on the pain scale if I dared move a muscle.  It has also been having rough cognitive effects.  I've always been able to count on words and being able to write but that's been tough this past week.  The ghost-writing is taking 5 hours to do what used to take 90 minutes and two hours just to reword two paragraphs from a news report.  On the worst days, I haven't been able to finish a sentence aloud without a struggle.  I won't admit how many times I'm hitting the backspace key.

Today's not as horrid in the words world so I wanted to visit the blog-o-sphere to confirm I haven't fallen off the planet.  But I'll need forgiveness for not being at my most eloquent.

I've mentioned it in passing, but I've been seeing a Pain Shrink at the pain management clinic.  I cannot recommend it highly enough to chronic pain patients.  I am not generally a talk therapy kind of girl.  It just doesn't work for me.  I spent some time in couples' therapy with X.  At one point the counselor noted therapy seemed to be similar to my workouts...I did it hoping for results but never truly loved the time itself...the word "endure" came up in there.  X suggested in a session that he thought I needed individual counseling to process some old wounds.  The counselor said that some people find therapy actually re-traumatizes them, making old issues resurface and making them worse instead of helping to heal.  I always understood it could be wonderful and helpful to the right person.  Just not for me.

Pain counseling is really different.  In part, I think it is because it is about problems in the here and now versus stuff in the past that I've muddled through for long enough in my own head.  It's also just helpful to have someone who "gets it."  People can be incredibly supportive...I couldn't ask for a better partner than my Military Man...but it just is hard for anyone to fully understand unless they've been there.  Or, I suppose, unless they are really trained as a specialist and have decades of experience under their belt.  Pain Shrink really only works with pain and rehabilitation (mostly from physical problems, though he's seen substance recovery too).  He's seen it and knows what chronic pain does to a person's mind and body.  He's possibly the most helpful member of my ever-growing pain team (adding a new doc soon...).

He stood at my side when I fought the first, evil Pain Doc. He told me I wasn't alone in finding him unsupportive and even cruel....that it wasn't me and I needn't accept his verdict that I'm too wimpy and need to just deal with being bed-ridden.  Before Lady Pain Doc returned from leave, he said he'd help me find another clinic if I needed to...that he'd try to help me get in since sometimes pain docs refuse to take a transfer, though he warned it would be a decent drive so wasn't ideal and encouraged me to hold out to see when Lady Pain Doc might return.

He reassured me that needing pain control meds was nothing to be ashamed of, that he'd seen people who fit the "drug seeking" label and that I was not one of them.

He's told me not to feel like I should be ashamed of needing to wallow sometimes.  Nor should I feel like my pain is less true than a life-threatening issue, that it was normal to feel like there's a pain hierarchy but I shouldn't get caught up in it and that my pain was still quite real.

He told me it's normal to have days when I can't fight.  He said there's nothing wrong with sometimes staring at the ceiling, unable to do much else, and wishing the ceiling would fall in.  He said that's entirely different from being suicidal (though said to call if it ever went in that direction).  He said it is normal to sometimes want to get away from a body that hurts all the time.

He said he's seen surgery wards that give everyone a teddy bear and encouraged me to hold Teddy Bill without shame when I am lying in bed and hurting.

There's more, but I'm running out of word-steam so I'll finish with one that kinda made me cry, even if it feels a bit too much like tooting my own horn (how sad that it is so hard to praise oneself).  It is something that I think every chronic pain patient should hear...

He told me people ask how he does his job, seeing people in horrible pain day in and day out.  He said he told them that they wouldn't believe how amazing pain patients are, even if we have weak moments and days when we falter.  He said he had nothing but admiration for his patients, including me.  He said he was in awe of the courage I show, especially when I've pushed past all my limits to be there to see a dear friend get married and to help MM through a difficult loss. 

I haven't felt that lately.  I've felt all fought out.  He said that was fine too.  Which sometimes you need to hear from someone other than your Mom, Dad, and boyfriend.  After all, he's seen it all, he has a PhD in it, so it must be okay to be weak sometimes, and frustrated, and tired.  It doesn't make me a wimp (contrary to what the first Pain Doc said).  It's okay if some times the pain wins.

Saturday, July 21, 2012

Bye Bye Birdie(s)

I confess...I really do want to blog more.  And I really do want to write about more than pain and books.  But I am just feeling drained of energy of late.  The latest attempt at remedying the pain doesn't seem to be the magic bullet.  Back to GP next week and Lady Pain Doc on 8/8.

Anyway...something different...perhaps only of interest to me and definitely a bit rambly, but a bright spot in our house...

Last year, a robin repeatedly tried to build a nest on the front porch light.  We pulled it down several times, always in the early-going, because it simply wasn't a workable nesting place.  She was pretty determined but eventually did fly off. 

I'd tried to tell Momma Robin that the back light might be a better choice and she listened this year.  She also had good timing.  We do use the back door to get to the grill a lot in the summer, but we've been away a lot so she got the jump on us.  Plus, we are both softies and couldn't take it down once it was fully built.  It was a bit of an odd looked like it was two-stories or like she'd built a second nest on top of the first.  Apparently they do sometimes do that, but not usually before they've raised a "clutch" (I've learned some Birdie Vocab...they have a couple "clutches" a year between May and July).

We returned from our last ten day trip, a trying and stressful trip when MM's father passed, to find one robin on alert.  She was watching us through the window, perched on a railing just outside the kitchen.  We opened the back door and were greeted with quite the squawking.  The Baby Birdies had hatched very recently..MM says there were four but I only ever spotted three.  They aren't the prettiest of things, half beak and half shrively body.  They still made us smile.  They were constantly chirping and looking for a visit from Momma or Poppa (apparently both parents feed nestlings...more Birdie Vocab).  I read that they were supposed to be wired to stay still unless they were about to be fed.  They didn't get that memo.

It was pretty cool to watch them evolve. The nest was a bit high, I could see them when they passed the rim but couldn't see inside.  MM often held up his phone above his head so we coud better peek into the nest.  They gradually grew wings and they did quiet down a bit in time. We checked on them a few times a day,   Momma Bird and Poppa Bird were vigilant protectors.  We were dive-bombed when we dared venture out the door and eyed when we stood near it.  One was always perched nearby and the youngins' were fed often.

I knew they only spent about two weeks in the nest and we could tell it was getting tight.  Momma seemed to ease up on the vigilance, perhaps an effort to get them to try their wings.  We worried they'd fall too far, the wrong direction was a big plummet down concrete basement stairs.  Everything said they could glide safely down, but we were still fretful watchers.  MM hooked up a plastic sheet to cover the stairway and stop a fall.  He called it the BRD ("Birdie Rescue Device")...I called it the trampoline. 

One got brave and hopped out yesterday afternoon, a bit before the others.  Birdie Research said this was the most dangerous period for them since they could really only hop and just flutter a small distance,  Birdie 1 was venturing a bit far, in the direction of an outdoor cat.  We'd read that it was a myth that Momma and Poppa would abandon a baby that had been touched so MM decided Birdie 1 needed a rescue.  I wasn't such a fan of the idea, but MM scooped Birdie 1 up to bring him closer to home.  He screeched and suddenly every adult robin within a few bocks radius arrived, screeching and flying in protective circles.  Birdie Research said each pair of parents was given it's own space and we really hadn't seen other robins nearby since the little ones arrived, but quite the flock arrived.  It definitely left me pondering about animal communication.  Is there a Birdie S.O.S.?

Birdie 2 fledged (Birdie Vocab!) last night and Birdie 3 left this morning.  MM asked to keep one but I told him that it was time for them to go.  I know they are nearby as they learn the ropes, but we haven't spotted them today.  I did see Poppa scanning for one mid-morning, a bit of food in his beak...apparently helping feed the fledglings for a little while longer is Poppa Robin's job.  

As evening rolled in today, MM took down the vacant nest.  Birdie Research suggested doing so.  It was already ridden with mites so clearly the necessary call. 

We'll push on through our Empty Nest syndrome   Bye Bye Birdies.  Come back and see us next year!

Friday, July 13, 2012

Book Time...A Beautiful 4.5 Star, Happily Rounded Up (Beautiful Ruins by Jess Walter) and a Three Star w/ an Intriguing Plot but Never Pulled Me In (Little Night by Lunna Rice)

I confess...I've been in a slow reading period, largely because circumstances have just left me rather worn out.  I feel like it has been eons since I wrote a review post and even a good while since I finished the first of this review duo.

It is hard to really explain this book, another one I read thanks to the lovely folks at Harper.  It bounces from a small coastal town in Italy to Hollywood and from 1962 to the present day.   The story opens with Pasquale, a young man trying to bring tourists to an inn that's located in a town that even most maps likely overlooked.  He intersects with a young starlet who comes amid the tumultuous filming of Cleopatra, as well as a young writer trying to make sense of the world after his time in WWII.  Other plotlines involve a crumbling legacy of a Hollywood director, a starlet who thinks she has been stricken with stomach cancer, and a former musician drawn in by the dream of returning to the stage.  And, yes, since most other reviewers seem to mention it so I feel compelled to follow suit, Richard Burton has a role and there's also a glimpse of Elizabeth Taylor.

The various plotlines, characters, and timeframes could have, in the hands of another writer, sparked confusion -- especially for someone like me who often struggles with the "who was that guy?" question during movies.  However, Walter manages to make characters vivid enough to stick in the reader's memory.  She paints beautiful images of place and very real, very fallible characters.  Some are more likeable than other, but all stay in the reader's memory.  It is not an easy read, nor a particularly quick one, but I think it is worth the effort.  While I tend to read for characters, I think it also has enough plot for a reader looking for a more in-depth story.  It is a lovely story, ultimately about what and whom we love.

I'd likely give it 4.5 stars, just because I'm stingy, but I'll round up to 5.  It is a book for readers and lovers of written words looking for a novel to fall deeply into and a journey that rewards the follower.

I won a copy of this book on Goodreads and had not previously read anything by the author.  The plot was intriguing and the story opened with Clare making a visit to her sister Anne.  The sisters, close in youth, have grown apart due to Anne's controlling and abusive husband.  Clare visits in order to try to convince Anne and her young children, nicknamed Grit and Gilly, to leave the situation.  She is making progress when the husband returns home and nearly chokes his wife before Clare stops him by hitting him with a burning log.  The husband claims he was attacked, Anne backs him up, and Clare spends two years in prison.  Many years pass, with the sisters estranged, when Clare is suddenly contacted by her niece, Grit, now 21 years old.  The novel explores both Grit and Clare's lives in modern day NYC as they attempt to understand their pasts and become a new family.  There are also flashbacks to Clare and Anne's childhood as well as the story of Clare's long-term relationship with Paul, whom she met in her teens.

I wavered on this book.  I didn't really expect it to be spectacular, a bias I'll admit I hold against the more prolific fiction writers of our times.  I did enjoy it, but it definitely ebbed and flowed.  I was interested in the childhood backstory, Clare's career involving NYC bird life, the growing relationship between Grit and Clare, and in Clare's relationship with Paul.  I was less interested in the developing mystery when Grit believes her mother is trying to reach out to her, Grit's film project,  and in some of Grit's own forays into NYC, including her own flirtation and a potential career opportunity.  As I write that, it becomes clear that, beyond her intersection with Clare (one of the high-pints for me), I wasn't all that compelled by Grit.

This is an okay book, just not something I'd feel compelled to share or revisit.  Three stars.  Perfectly fine, perhaps a decent plane read to keep you busy for a bit but one I'd gladly put down for a cup of Diet Sprite from the refreshments cart.