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!