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.