on bodies and answers, on body love and the flip-side of hope

This is an introductory post...a topic I've covered it has evolved (or I have).  I want to write a much more substantial post in the future.  But I also want to get some of this "on paper" ("on screen"???) ...and out of my head.


Element One:
I believe that learning to love and accept (but mostly love) our bodies is a crucial component of finding joy and becoming an adult...esp for those with food and body issues in their past.  Learning, truly learning, to love your body is one step towards wisdom.  For me, this means appreciating my body for all it can do.  And it COULD do crazy things (I'll talk about my half marathon till my final day).   But now..

How can I love a body that only seems intent on making me suffer?  That threw (visible) hives at an already awkward junior high student who had to bring a whole box of tissues to school b/c she went through that many?  Then the endo. Then the back.  Not to mention the low functioning immune system.  How do I love this??

ASIDE - Of course, people have it MUCH worse.  But that doesn't actually take away the problem.  I'm good enough at guilt so please don't leave me with more (i.e How can you complain about back pain when people are dying?)

Element Two:
I don't tend to   get excited about things, which is weird and a bit sad.  But I also don't tend to get anxious.  So the terror-level fear I'm feeling about the surgery in May is unusual for me.  I have thought I needed revision surgery for years now.  It has been where I thought we'd end up, even as i plodded through non-surgical options.  I've been waiting; now I am formally waiting since it is formally happening.  This is it.  The Answer is coming in lat May

But....

What if....

it isn't?

What if this doesn't work?  What if my pain is still there?  Or worse?

Synthesis:
I've had trouble with food lately.  Mini-binges (see:me on BED, eating disorder group on BED, same group on formal inclusion in diagnostic manual).  And with working out, I've ricocheted from feeling unable to move because i can't get motivated to feeling unable to move because i way overdid it.

It took time till I connected the dots.

I know I need to stay positive.  I DO believe it will work.  But the "whatifs" (I imagine scrawny little furballs) are whisperring in my ears

37 Years of Gratitude

No, it's not my birthday.  A blogger I admire, Melanie from Melanie in the Middle, recently posted 45 things that make her grateful, an idea she got from a woman who posted 42 in honor of her birthday age. I thought I'd take a stab. The number is based on age so i suppose i'll be honest and do the full 37.

1. My husband -- for more reasons than I can say
2. Friends -- I rarely see most of them, but simply knowing they exist and that when i do see them it will feel like not a moment had passedl
3. My family  --  for many reasons but mostly for being an ever-present support network.
4. Authors, publishers, and others who make books,especially those still making actual books (sales of hard-copy books are growing, at least in Australia) -- I've loved books since I was a young girl and refuse to make the e-transition.  More broadly, there's nothing quite like a book you can fall into and the odd feeling of fictitious friends.  Oddly, I find the best and worst are marked by the same difficulty finishing....the latter because it's hard to pick up, the former b/c you don't want to put it down and say goodbye.
5. Our cat Smoky -- she came to us in a sad way and we're both terribly allergic (stock tip: Claritin D sales steady/growing in central PA),but she manages to make me/us smile everyday.  She shows so much love and is a pretty atypical gal.
6. Our resting-in-peace frogs --  I am grateful for having had them in my life.  They really were my first pets in many ways since the fish aren't all that interactive
7. Our two new frogs - Currently the size of nickels!
8. The fishies -- Okay, they don't feel like the other pets, but they are soothing to watch and I've still shed tears when we lost some favorites.  
9. Good TV -- Shows that pull you in.  From HGTV and Lifetime that provide mindless entertainment that make "treadmill time" pass to great dramas and comedies with characters that feel real and that often bring up issues that challenge my thought process.
10. Wine - A good red not only makes my taste buds happy, but can unknot the muscles that tighten because they compensate for my "bad" spots.  
11. Blankets - I'm totally a "Linus," dragging blankets everywhere including on longer car trips.
12. Teddy Bill -- A gift from our first Valentine's, merely two weeks since we'd met.  I'm not sure that I've spent a night w/o him since, a kind nurse even had him resting on my bed when I awoke from my last surgery.  He's been squeezed hard or held lightly, depending on pain levels (when it gets too bad, i go from wanting to squeeze to all-but-limp.
13. Sunshine - Its magic is under-appreciated...think sun shining through rustling needs and warming up your arms on those "just right" days
14. My Y Class -- I was terrified to attend and scare out-of-my-mind to actually teach.  But it has been good for me both physically and mentally.
15. Daisies - My favorite flower for its simple beauty.
16. Daffodils - This one daffodil in my neighbor's yard mean spring has arrived,
17. My treadmill - Okay, mine drives me nutty b/c it has broken multiple times, but it was one of the wisest purchases I've made
18. Modern medicine - I wouldn't have survived in another age.  Also, while I feel very torn-up about them at times (I joke about them to hide it), pain meds really do make it possible for me to live at least something of a life.
19. Alone time that can be shared -- There's a beauty to finding the person who you can feel alone with (even if it means I'm ending a sentence with a preposition since I like that wording).   It's an introvert thing...we recharge when we are alone, but I can also do so with my husband in the room
20. Ice cream - Self-explanatory.
21. Cheese - Same
22. Jelly beans -- I'm an addict.
23. Cereal -- Yeah, another addiction.  At least this one's fortified!!
24. My books (as distinguished from books in general) -- The only things I hoard.  I'll lend them out to trusted friends, but I always ask for them back.  I'd love to be someone who donated used books so they can be loved again, but I love having my piled-high shelves!  
25. Warm scarves -- Not a fashion statement, I just find it makes a huge difference when I wear my peacoat instead of my big puffer and I find wearing one (I only have one, basic wool scarf) oddly soothing.
26. PJs - 'Nuff said.
27. Scrubs - I still have some that my Dad grabbed for me and they make awesome PJ/lounge pants.
28. Nice plates -- Ok, I may be struggling a bit!  Still, I love our coordinated white square plates and how clean the lines look in the cabinet.  I was tempted to photograph them when we first filled the shelves with the new ones.
29. A warm house on a snow-filled day -- Too easy to forget that there are many without that luxury.
30. The Tempurpedic mattress - The husband bought a feather topper but it's now doubled over on his side b/c I prefer the mattress itself (I suppose that's our low-tech Sleep Number system).  It has the perfect amount of give to it, esp important when you're frequently forced to spend the day there.  A worth-it splurge.
31. The Inn -- The site of our lovely brunch wedding.  I fell in love when we drove up and have enjoyed several totally relaxing stays.  There are very expensive rooms but also totally reasonable ones.  While "perfect" is always an exaggeration, they nailed the "feel" for our wedding and I know future stays will be all the more special because of the memories.
32. Kind neighbors -- They make a street into a neighborhood and I've been lucky to have some stars.  I call our neighborhood a "cup of sugar community" -- you could show up on many doorsteps and "borrow" a needed supply.
33. A beautiful landscape -- The variety is too essential to this "item" to tie it down.  Rolling hills, changing leaves, a roaring ocean, perfect clouds, waterfalls...  And Central PA which is much more beautiful than people might imagine.  
34. Naps -- I couldn't survive my life without them.  I don't always actually sleep, but lying down and being quiet is essential to surviving chronic pain.
35. Hot showers -- Often the best part of my day!
36. Laptops - They make the world so much more accessible for someone stuck in bed or at the table.  I can't picture being "tied" to a desktop.
37. The online world -- I've found tremendous support online and people who really understand some of the difficult areas of my life.  I've found true friends, some of whom I've never seen in person but who have helped me through the hard moments and celebrated the good ones.  And I get to share my story in the hopes that it helps someone else which gives purpose to the pain.

a little late...reflecting on our wedding day....

Let's talk about a party.  I'm not sure which beginning to begin with but this post is way overdue.

I'd start with waking up but despite being under the covers by 10, I doubt I got much sleep.  I finally gave in sometime around 6 and climbed out to straighten a few things and let my hair lady into the room.  I'd been honored to have one bridesmaid stay with me and the other two arrived earlier than I had any right to ask (but I asked anyway!)...my mom had probably been up for hours too.

Prepping went way too fast.  My hair and makeup ladies helped make my loved ones even more beautiful and made me feel pampered.  A minor hiccup felt major when we couldn't get my mother-in-law-to-be to the room but they helped solve that too (a side room off the Inn lobby).  My officiant amazed me with his understanding of brides (well, he HAS done 2,000+ weddings and isn't called the Marrying Mayor for nothing) when he knocked and just passed word through the busyness that he was there, the groom was too, he had the papers he needed (including my uber-detailed schedule and thoughts), and he'd see me at the end of the aisle.  Somehow it was suddenly on the later end and, being me, I ran across the parking lot in "wedding hair/makeup" and my PJs (late isn't me, but PJs definitely are)....running past a good dozen guests and letting them know it never happened.

More blur....and then I was standing on my step-dad's arm and two staff members were waiting my okay.  I remember giving a subtle nod and the doors opening.  I must have moved, but that's all a blur (thanks for getting me there, Jim!) until I was holding Bill's hands and looking into his "allergy eyes" (or so he says).  We'd decided that we'd exchange matching vows but also read a previously-undisclosed message to each other.  I'm told I was brave for trusting him but that never occurred to me.  My words, however, had gone through a million iterations in my head before spilling onto the page the week before.  I'm not sure how I managed to read them, or how anyone understood through my tears, but I did and they did.  I listened to Bill and was glad I went first...I told the officiant I wanted to kiss him then and he kindly told me to take his hands instead.  And then, it was done.  Well, not really, but that's all I recall till we got the nod....the first kiss was practice, the second was perfect.

Pictures, appetizers, announcements....and the man I never knew to dream of singing to me as we danced.   And then the FOOD.  Worthy of its own post but we know I'd never get to it.  We'd picked a brunch for a myriad of reasons including money and convenience (just about everyone had a two hour-ish ride so going in and out was an option for those who wanted it), but also because we love the mixed meal.  We weren't disappointed with the spread that stretched from bacon to raw oysters (with lox, quiche, and house-made pastries in the middle!).

There's more I could say but I can't imagine more detail without MUCH more detail. But I must take the moment to thank all our guests.  I was beyond honored to have such a wide range of people join us, from friends I made at age 8 to college classmates to people I'd only grown to know and love in recent years.  From family, blood (who've been there through so much) and marriage, to friends-like-family and sisters of my heart.  Thank you.  Thank you.  Thank you.  For the generosity but so much more for your presence.  I'm truly blessed (and there's no better word, even for someone who had never been religious).

Of course, the best "guest" is the one I get to sleep next to every night.

on dwelling, social anxiety, and looking in

There are moments in life that I dwell on and replay in my mind.  In some cases, it is truly about the moment itself.  In these cases, I am often left wondering how a different response on my part might have led to a different result whether that's a momentary difference or a life-altering one.  In other cases, it isn't really about the moment itself but about what it represents in my mind.  These are moments that stand for a bigger pattern or bigger issue and for one reason or another my mind has chosen that moment to represent the larger whole.

One such moment occurred when word traveled back to one of the hosts that I was upset over not being invited to a gathering.  The gathering has several hosts and I considered a couple of them friends.  The others weren't friends, but I kinda assumed there was a shared neutrality...not friends, not people I'd avoid.  A member of the former group stopped me and said he heard I'd been hurt.  He blamed the lack of an invitation on the belief that inviting me meant inviting another person and said the "neutral" folks didn't want to invite her.  He extended an invite and apologized on behalf of the two I considered friends for the hurt.

I didn't believe it for a moment and didn't go.  Life proved me right and it was me, not the other gal, who wasn't wanted (she didn't say it, but I am certain she received the same talk but with a change in parties and it became clear in time she was very much wanted).  I can't say how the conversation had truly gone down and whether I was wrong about the "friends" or it was just the "neutrals" who didn't want me to attend.  

I have often said that people don't have to like me.  That's true.  But the moment above is partly a dwelling point because I am often on the outside looking in and I can't say I don't get caught up wondering what it is that leaves me there.  The moment also left me with the familiar question of whether or not the people I deemed friends also preferred I leave them alone.  That one bothers me a lot.  It leaves me in the rather pathetic position of needing reassurance that I'm wanted....which I know doesn't help my popularity.  I've pulled away from relationships because of that fear.  

I know I have some social tics.  I didn't learn certain social traits early and then (and I hope this sentence makes sense outside my head) not knowing them kept me from learning them later.  I was a dedicated student and I did well but it took a LOT of work and that took time.  I never felt I fit in because I felt like I wasn't up to the caliber of my classmates, yet I know I gave off an aura of thinking highly of my academic self.  I somehow missed being in the social group of my honors classmates and I really never met anyone else.  This all adds up to missing some vital social growth.  

Sometimes it feels like I'm on the outside before I even have a chance to be socially awkward.  When I do get a moment, I do see some repeat "issues" and yet haven't learned the fix.  I am apt to respond to a story with a story of my own and I'm not sure that's always wise but I'm also not sure what else to do.  I have trouble extending social invitations because I worry about pressuring someone into my company and I am aware that not asking makes me less likely to be asked.  While I fear it sounds like a major cop-out, the continuous health problems don't help matters...until I am quite comfortable with someone, socializing takes energy I don't always have.  I talk about health too much...I learned to hide the physical pain for work purposes, but I couldn't keep it up after hours.  

The moment I opened with popped in my mind today and I felt a need to "blog it out."  I'm not sure I did so successfully, I don't know that there's much clarity in these ramblings.  While writing about an emotionally charged subject, like reliving certain moments, isn't fun, I believe doing so helps me process.  Maybe one day it'll lead to some more clarity, either in a light-bulb moment or in a gradual parting of the clouds.  I'm not looking to get reassurance or pity or anything of the sort.  However, as with blogging honestly about pain and certain demons, I'll hit "Publish" in part because I hope one person will stumble upon these words and feel at least the smallest bit of reassurance that they aren't alone in the world and that they aren't the only one wondering how they always end up looking in.  

I won't re-read this, which is totally selfish because sometimes immediate editing also means a bit of sad dwelling, so I apologize if it is hard to follow or if typos abound.  And if anyone happens to recognize the opening moment, please know that while I dwell on it, I don't hold any anger about it...it is a tangible moment that taps into many intangible ones and dwelling on the moment isn't really about dwelling on the moment at all.  

a moment to grieve

I keep thinking I'll find the time to blog again and it keeps not happening.  My father was always really interested in my writing....heck, he wanted to read my ghost-blogging stuff too but 'fessing up kinda defeats that whole "ghost" idea....  Since he loved the idea of the blog, he deserves a post. 

We had a complicated relationship, but it grew and prospered as I became an adult.  I still called him "Daddy," even if I drew looks.  He wanted nothing more than for those he loved to be happy.  He also wanted to help people...which is, sadly, all-too-rare in his chosen field of neurosurgery.  His staff always had kind words for him...I believe that the way people treat those who are "lower on the office food chain" is one of the best measures of a person.

He passed away very suddenly on Tuesday November 5.  He was 66.  He'd done three miles that day and then felt ill.  One moment he was here, the next he was gone.  I didn't get to say good bye and that saddens me.  The last time we talked, he'd woken me from a nap and I was groggy and asked if we could start aiming for a different time of day (he had an uncanny ability to wake me!).  But I know he knew I loved him.  I also know he loved me and the other members of our family, be they of blood or of heart. 

Goodbye Daddy.  I love you.

on wood chips, grocery stores, and farmland

 "---- Area School District Property"

(Side Note: The treadmill has been broken for much of the summer, they "fixed" it and it'd be good for a bit and then stop again. After three failed repairs, the new treadmill comes tomorrow. Walking outside is much harder on my body, as in crying at night after many walks, but I'm stubborn.   I "write" while I walk, especially when I can't watch TV and read magazines.  Still, I've been struggling with energy and neglecting the blog.  My pain-fogged mind has meant my ghost-blogging takes a lot more time and saps all of my writing energy.  All of which means I've "written" this post half a dozen times, but never committed it to actual writing). 

The signs appeared early this summer and have been the topic of discussion here in the Rambling Man (I am highly amused by that combination of "Rambling Blogger" and "Military Man") household.  They've been the subject of even more mental ramblings and a good bit of thought about what may follow.

I moved to Lower Bucks County when I was eight, the summer before 4th grade.  My mom had married my step-father not long before and the relocation to southeast PA was for his new job.  We'd been in New York....a nicer part of the Bronx than people tend to first picture on hearing the word, but still within the NYC boroughs.  The move was to an area that mixed suburbia, small town, and rural living.  Our development (where my mom & step-dad still live) had farms on two sides and one diagonal.  When my mother asked how I'd remember where to get off the school bus, I proudly said it was the stop next to the wood chip piles.  She cautioned that the wood chips might not always be there.  I replied: "But Mom, we're in the country now!" 

While the wood chips were there as long as I needed them (and I switched to another bus stop anyway....the complex decisions of youth...), her prognostication (I'll collect my 50 cents) proved correct and the pile eventually disappeared.  It happened gradually, starting with two very large homes on one edge of one of the fields (we watched them go up from the bus stops).  In time, the farms bordering our neighborhood were all gone, replaced by houses, houses, and more houses.  They added some small roads within the developments, but they all dumped onto the same "main" roads which resulted in back-ups that made the town seem even more crowded than it was. 

When people in Central PA hear we grew up in Lower Bucks, they almost inevitably mention the traffic.  A friend who is also a transplant to Central PA from Lower Bucks (a classmate of mine but one I didn't know...the sole high school was bursting at the seams by the time we graduated) reported that one person asked how she was finding the quiet environs out here after growing up out there.  She replied, quite accurately, that the Central PA of today is not all that different from the way it was in Lower Bucks when we were kids.  MM likes to recall riding his 4-wheeler into "town"...home to a few retail establishments, including a Woolworth's style store, a small video rental place, and a grocery store that somehow sill hangs on despite much larger competitors.  Both MM and I prefer the quieter life of that time, hence enjoying Central PA today (as memorialized in my little series for a freebie paper). 

But, we wonder if time will catch us.  Less than two years ago, our small grocery store was replaced by a sprawling supermarket (same regional chain, much different store).  We didn't see the need, especially since it took away the option of walking there and added a bit more traffic near out street) although we have grown accustomed to the big store.  Aside from on the few inevitable days where it smells like farmland (more accurately, fertilizer), we like having farms nearby.  The big expanse of land in the picture above is just a stone's throw away...our yard backs into another yard, the farm is right across the street from that house.  We can see the land from our kitchen window and both appreciate the solitary tree in the midst of the fields (okay, there are two...but from some viewpoints you only see the one and I think that's much cooler).  The signs, showing the recent purchase of the land from the farmers, seem like....well, a sign.

From what I've read, the school district purchased the land with an eye towards building a track and adding in more athletic fields.  This has me characteristically torn.  I favor public education and know, despite never being involved myself, that athletics can be an important part of schooling (though still think the district needs to work a bit more on literacy and writing skills).  I think it is a bit sad that the baseball team's field is adjacent to the high school but the softball team is housed behind the nearby junior high...it isn't far at all, but it bothers me in principle (especially since it seems like the softball team does better).  Still, I prefer "my" farm (not the typical case of NIMBY...or, more precisely, Not in My Back Yard-neighbor's-front-yard).  MM worries about traffic and noise (it's garbled, resembling a Charlie Brown adult, but we can hear the PA during football games as it is), noting the proximity to the farmland was a big element in favor of choosing the house.

There's other farmland nearby.  We'll still be a quiet little town (at least when there aren't trials and CNN vans).  It is just a few athletic fields, not a big housing development or shopping area.  But, it is the end of one more farm.  And I wonder if it's the start of time catching up with us (and if maybe I should have seen the grocery store as the first sign).  And I still miss my wood chips....

wherein i ponder...and over-ponder (aka the one about the hairbrush)

I can't say how long it has been for certain, but it was definitely high school at the latest.  I'm change averse, but this one takes it to the extreme.  I've tried to change, but it hasn't worked in the past.  Yesterday, I tried again and I think it took.  I may finally have actually purchased a new hairbrush.

It's odd to be this reflective over something so simple, but it really has been a long time.  It went to college with me.  It went to law school.  It's travelled from ATL to BOS, back to my childhood home near PHL, and now out to SCE (the less well-known airport code for State College, PA).  It prepped for dates with the wrong guys and for a party where I stumbled upon the right one.  It has seen countless hours of fighting with my hair, which has often been the unfair target of a complex affair with the image in the mirror. 

I've bought new brushes in the past, when I simply felt like I should or when I felt like was somehow inappropriate because it didn't look like other women's brushes.  I remember trying as far back as my senior year in college.  It never took and the new brush wound up a gym bag spare, if it was lucky.  But this week, I suddenly felt like the brush wasn't "working" and I bought a new one yesterday, because I actually wanted it.  I spent way too long in the hair aisle, although I will defend it as something of a big decision for any woman and I did pick one fairly different.  And, while it is only 24 hours later, I love it.

I like to find meaning in things.  But, and there's a contradiction in writing this statement, perhaps this change doesn't have any deep meaning.  I'm not tossing my old brush.  It's seen a lot and we have a long history, it is a mere object but the history imbues it with meaning.  But maybe buying a new one doesn't, maybe I simply bought a hairbrush.

Rambler Raves (pssstt....i save the best for last)

Apologies for the silence...I really intended to step up my blogging efforts but that just hasn't happened.  I'm dealing with some uncertainty on the back front (that phrase amuse me) and the pain's been rough.  It often saps my mental capacity and it has been taking longer to do my ghost-writing law blog posts so I have been neglecting this little corner.  I'd say I intend to rectify that, but I'm nervous about even making promises to myself.

Anyway, a simpler post today, making good use of my beloved bullet points and sharing some of the things your Rambler is loving these days:

• I have a love/hate relationship with my hair.  I got it cut recently and she took a bit more than usual and threw in a few more layers.  I'm finding it really tough to control and relying on my recently acquired flat iron when I need to look decent.  However, I'm loving Treseemme's Cashmere Touch Hyrdating Serum.  Left alone, my hair can feel kinda course and rough, but a few pumps of this product makes my hair feel nice and soft.
• I'm a new convert to Greek Yogurt.  No real brand rave here, I pick a lower calorie version which isn't always truly the best health option, but I have become a fan of the thicker texture and added protein boost.
• On a less healthy note, Jelly Belly Belly Flops rock.  They need to be ordered but they are still a major cost saver compared to the regular packs, especially given my addiction to them.  You get the leftovers that are misshapen or otherwise imperfect.  They warn that it may include some of the icky flavors from their specialty Harry Potter themed packs, but I've only had a few that tasted funky.  Most are from the typical 40 flavor pouches.
• On the "stuff normal folks don't talk about" front, I am a horrible teeth grinder.  One dentist said I was "impressive" after I chewed right through two temporary crowns, one metal.  After chewing through an expensive dentist-ordered night guard, I tried drugstore types.  I never found the "boil" ones comfortable and chewed through them pretty quickly.  The Sleep Right Guard has been MUCH better and much more durable.  I did actually trim it a bit to make it better for my small mouth but will try their "slim" option next (lasts longer, but not forever...I've had mine about a year and expect I have a couple months left).  It is one of the pricier drugstore options, but it definitely saved me money over time.  They do offer replacement if you chew through it or have other issues w/in a three or six month time frame (depends on specific style).
• I have an inability to not glance at clearance sections, including a small area in our local grocery store.  I picked up a Sweet Vanilla Fig body wash and lotion set for something like $6....the website lists it at $25.  Love the scent and the fact that it is from a small company that focuses on natural ingredients. 
• I'm moving slowly, but I am still enjoying reading for Harper....hoping to have the final pages of a book done and a new review up soon.
• And, the best rave of all, adapted from my recent Facebook status, posted during a mini-getaway with MM -- Best hotel upgrade yet... Checked in with a boyfriend,  checking out with a fiancé!  Love you more, mister. I couldn't have even imagined finding a partner as wonderful as you. Thanks for giving me the honor of saying "YES! "

Playin' With the Calendar -- January 32, 2013

The word "irony" is overused.  And this is not a true case of irony.  But I'm still tempted to call it ironic...  (P.S. I will come fix this soon.  I am writing as my sleepytime meds are starting to work...still awake, but prone to beinga bit :off:)

I'd just left Pain Shrink.  I'd pretty much used the whole hour just updating him on the mess that was January.  Actually, I started with a bit of the holidays since I'd seen him last before Christmas when MM and I went up to his mom and tried to make her a holiday despite her being in the rehab center following her triple bypass.  Pain Shrink remarked that he'd heard of plenty of bad months, but very few that had as many hits as January did for us (I'd actually cancelled a prior appt because we were out of town for one of the funerals). 

We actually booked an appointment in two weeks rather than the usual three or four since we hadn't gotten to cover much about pain (and January raised a lot of issues...plus the pain has been and remains pretty awful).  I decided, actually with his blessing, to stop for a bottle of wine.  I also realized I had forgotten to send an email and, at a light, pulled out a paper where I'd noted some mileage information on the car.  I wanted to send an email from my phone and to do so from the lot before I forgot.  I wanted to clarify that Betty (my 2000 Acura) was actually getting under 7,500 miles annually now that Fred (the Buick) is also in our household/on my plan. 

So, vented on January, prepped to send an email to my State Farm agent, and turned in to hit the wine store around 4:30 on Feb 1.  And, in what wasn't true "irony" but I still want to call ironic, my car got hit by a woman backing out of a spot.  Oddly, I'd noticed a guy a little further up and wasn't sure he was looking so I was going even slower than usual parking lot aisle speed.  I did not, however, see the woman on the passenger side until it was too late and she was coming at me. 

The woman was nice and apologized immediately (yes, they tell you not to do that, but frankly I appreciated it and we both knew it was clearly her fault).  Her car had a bit of damage.  Betty has a bit more...it is a bad enough dent that it became an outright hole in the front-most panel (just a bit off from the bumper) and a broken light.  The lady asked if I wanted to report it or deal with it privately.  I said I thought we needed to call the cops but that I didn't have the number and didn't want to call 911 if we could avoid it.  She had the number so placed the call.  Oddly, at that moment, my phone rang with MM's tone.  I told him I'd been in a nasty fender bender but was okay.  He asked where I was.  I said he didn't need to come but told him I was near the Wal-Mart (yes, it shares a lot with the wine store) .  He was actually right at the intersection/enterance to the store.  So he came, mostly just kept me company.  I did warn the other folks (female driver, male passenger) that my boyfriend was coming since he was nearby and said it wasn't at all b/c either of us was upset and they'd been perfectly nice...probably should have mentioned he'd be in uniform (looks like a general Air Force uniform, no real distinction for the Guard).

No one was hurt.  I did feel jolted a bit and ALL of me tightened so that includes the painful laces.  I made sure not to mention the preexisting medical mess....she didn't need worry about being dragged into some horrid fight (since I have no doubt some people would go after it all and try to blame the whole injury on her and find a coattail to ride on for paying for injury treatment.

Anyway, we waited.  Cop came and took my statement and then hers (without the other driver present so don't truly know what she said but she seemed to be an honest lady).  Told us to exchange info (we had already, it was too cold to stand outside so we did mostly wait in our cars but got the info done).  Basically said that we should call our insurance folks and they'll deal with the rest.  He noted some insurance companies tell the driver to obtain the police report....if you do that, they charge you 10-15 bucks.  The officer said he personally would argue that the insurance co should get it, more for the principle than for the $15.

So, yeah.  I did make a loop before continuing to the wine store....just felt weird to go right from the incident.  talked to my State Farm folks.  if she's honest, i don't even pay the $500 deductible.  And there is a shop that is on their Preferred List that also works for us.  I'll call tomorrow (Monday) ad then leave it to get an estimate.  Hopefully I won't need to be involved in any of the discussions of cost because the insurer get billed directly.  Likely going to do the rental car.  I pay 20%, they pay 80%, I'm allowed to do the intermediate but will go economy and it won't be a big cost for having access to a car (we have two others, Bill will be taking the Buick, I am NOT driving the Vette in the current weather). 

So, let's just decide that was January 32nd.  Saturday, a nice quiet home day, is the start of the new and improved month of February.

making sense of loss

They say bad news comes in threes.  I hope that means we're done.  January has been one for the record books.  I'm trying to process it, to make sense of the senseless, and to find lessons in it all.  I wrote about confronting loss back in the summer, after standing with MM as his father passed.  I wrote then about the meaning in final moments, and those thoughts are running rampant again.

One

The bad news started with a cousin MM hadn't seen since childhood, whom he recently found was also a friend of his closest friend.  He'd been ill with pancreatic cancer for some time.  He passed away at the same time that people were gathering for a benefit for his care.  He was in his early thirties.

I didn't know this young man, so my thoughts are a bit more general and may be wholly irrelevant.  But, I've long heard, including from Dr Dad, that patients who pass away after a long illness know when it is okay to go.  Some will wait for family to arrive, others wait till a member who couldn't handle the moment is out of the room.  I wonder if this young man felt a certain type of peace drawn from the knowledge that he was loved by many.  And if he also wanted to know people were together and safe.  There's a beauty in all that.  In wanting peace and to feel loved in the last moments.  And wanting your loved ones to feel the same.  They are moments we should seek out before our last.

Two

A brother-in-law, at times truly a brother, of MM's.  He was actually the first person MM introduced me to (I got a "you did good" review in a text).  His death was unexpected.  He was in his mid-40s.  He left behind three children and one step-daughter, ranging in age from mid-twenties to merely nine.

I don't think I'll ever lose the image of the nine year old girl running barefoot from her door, jumping into MM's arms, in tears, and saying "I miss my Daddy."  That moment is part of what I'll take away from this loss.  MM hadn't seen the niece in some time but there was an immediate connection.  That sense of connecting, and reconnecting, permeated the days spent with the family and friends.  It reminded me that death can bring people together.  And that we shouldn't wait for a sad event to make those connections. 

In a similar but distinct vein, this loss served as an image of how I think such times should go.  There was a lot to do in the days proceeding the funeral, the wrapping up that needs to be done when a loss is unexpected.  The memorial was a time for mourning and sadness, a noting of the passing.  When we returned to the family home, they played the same slide-show that had been at the memorial for a while.  I missed the moment when the change was made, but at some point that switched and a Just Dance game was flipped on.  I got a medical excuse but most others played, including people who hadn't connected in many years.  People laughed and had fun, both playing and watching.  This felt so right to me.  The loved ones mourned.  And then they lived on.  They reconnected and celebrated togetherness.  I'd want that one day.  To be remembered but also to have everyone live and smile and laugh.  Funerals are about loss but, in my mind at least, they can also be about life.

Three

This one was from my side.  My uncle was into vitamins and fitness before the days of GNC Vita-Packs and before everyone's key rings were adorned with gym membership cards.  He had a seizure one day and, although they weren't sure there was a direct link, it led to the scans that revealed brain cancer.  It was a vicious form, one people didn't tend to live with for long.  He fought an impressive three and a half years, including walking his daughter down the aisle in November and making sure his son was able to fly home from Arizona to say goodbye.  He'd gone downhill in the past year but never stopped fighting.  A final surgery in late November marked the shift towards the end.  He was in his mid-60s.

I'd grown up seeing this branch of my family about four or five times a year.  My Uncle was always all smiles.  At the service, we heard again and again how he'd touched people.  He'd always praised everyone, from his family to the staff at the cancer center.  And they all came to say goodbye. His son's childhood friends commented that my Uncle often seemed more interested in their lives as young people than their own fathers.   He found a way to pull out a positive trait and compliment each person in a very personal manner rather than a more superficial way.  He was a teacher and a therapist by trade and carried similar traits beyond the office.

I've been thinking about all that in recent days.  He lived for connection and dedicated himself to making people feel seen and appreciated.  Hearing people speak reminded me of how important that is and how real and meaningful it is to touch people in small moments.  I've always said I didn't need to be remembered in history books and have concrete proof of my days, that I only need to know my life touched other lives and that I gave something to even one person.  This loss made that belief even clearer.  I can only hope to be remembered as well as my Uncle was, as well as he is. 

My cousin said to me that he was tired of people saying they were sorry for the loss or how he was too young.  He said he preferred to hear how the people had been touched by his father, the difference his life had made.  That's the insight I'll finish on, the need to remember and celebrate lives and connections and the many ways in which we love and are loved in return.

P.S.  Perhaps it isn't right to add, but we also lost a fish last night, one of the first group we'd bought.  Thanks for living with us and bringing us smiles, Fork. 

a whirlwind of grief and other emotions

It has been a long year.  Already.  Or maybe it is still November.  I'm not quite sure.  This won't rank among the most interesting of rambles for folks who don't know me well, but I feel a need to record this period of time.

Life has been a bit of a blur since my cousin's wedding in mid-November.  That was the first time in a while I'd seen my uncle and he'd definitely gone downhill healthwise.  He fought to walk her down the aisle and the father/daughter dance caused a mix of tears. 

Thanksgiving (with the same family branch) was not long after, followed by my trip to a new surgeon....still facing delays in getting the tests I need to move ahead on that front.  Once again, I was reminded that being interesting and unique is not a positive in the world of spine surgery. 

At the same time I was seeing the doc, MM had seen his mom and found her struggling healthwise.  On the heels of that visit, she had a cardiac test that led to the immediate scheduling of a triple bypass in mid-December.  MM left from her house for a week-long work trip and came home for only a day or so before we headed back out to his mom's.   The surgery had shifted our holiday plans from her coming to visit to us staying at her house and checking her out of a rehab hospital (a hard place to visit, let alone stay) for day visits.  She's done very well, beating all the doctor's expectations, but is was a tough fight for her and hard for her son to watch.  Amid the holiday visit, my lacking immune system showed its face again and the trip out there also included a short but nasty virus...I am so glad I didn't share that with MM's mom (I was really worried since she was at risk for infections and other problems). 

We came home to a snow-filled driveway and we passed into 2013 with more winter weather.  In the early days of the year, MM heard from a friend en route to a cancer benefit that, in a "small world" moment, turned out to be for a cousin MM hadn't seen since childhood.  The cousin passed away while people gathered for a benefit for his care.  Then came the call that MM's brother-in-law had died suddenly.  We packed quickly and hit the road.  We stayed at my mom's for several days (it is in the same area as the relevant family members) while MM helped his sister with both emotional and practical issues, including preparing to close out the man's landscaping business which was in need of a lot of attention.  I just focused on being there for MM since he'd lost someone very important to him and pitching in where I could.  We both kept watchful eyes on the grieving children (a nine year-old, two college aged, and a step-daughter in her mid-twenties). 

Amidst this all, my uncle has fallen sicker.  He's been batting brain cancer for three years and there has been a downhill turn in the past months.  It has been tough on my mom (and, of course, my aunt and cousins, including the newlyweds),  At one point, it looked like we might have to extend our visit to include another funeral (MM had gone to the cousin's on Friday since we were in town, we both went to the brother-in-law's on Monday evening).  We debated having me stay and MM come back home until I called with news (the four-hour trip is tough for me), but they extended the projection a bit and we decided we couldn't stay in static waiting mode.  We both came home last night (Tues).  We know the next call will come soon and we'll both go back to help my mom and then see the rest of my family in New Jersey (the NYC suburbs). 

The recent weeks have taken a toll on both of us.  I feel like it has been a lifetime since November....I heard strangers extend New Years wishes over the weekend and was totally thrown to realize that was still appropriate.  I'm a physical mess (and still waiting on the insurance company to approve my CAT scan).  The emotional toll's been more on MM's side and I've been in the support role, but that's shifting.  I'm glad I've been able to be there for him and that I have him there for me.  Being an Us is helpful in these times. 

I'm trying to rest up during this lull and hold on to a period of normalcy.  I think we'll need to reboot 2013 once we get through the next few weeks. 

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"...like 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).

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: ramblingblogger@gmail.com (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!

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!).

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 notice....in 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....

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 head....like 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 awful...my 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 coverage....no 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 this..my 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).

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 nest...it 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!

Being in the Room -- Brief Hours Recounted and a Wish for a Loved One Departed

I confess...it's been a long few days.  I try not to talk too much about "other people's stuff" here and to focus on my own story and my own thoughts. I may be okay to live openly in the e-universe, but I can't presume others are as well.  This post will be a bit of an aberration.  It may also be hard to read.

We left Central PA on Friday when we got a call that MM's father was struggling.  He has been ill for some time, beating one diagnostic estimate by many years.  The past month, however, has been a downhill journey and this is our second visit in a very short period.  He was home the first visit and had some home health help, but required overnight care from a relative.  Towards the end of that stay, after some long nights for MM on the other side of parental care, he was moved to the hospice wing of the hospital.

We came back out last Friday for MM to attend a family meeting with the hospice team.  The care provided by the hospice team was amazing.  They were kind and gentle to the patient and also very available for the family.  They had a nicely stocked kitchen for families to use, either for themselves or to bring something in to the patient.  It was definitely a danger zone for this Rambler with graham crackers, cookies, ice cream, and PB, but a lovely touch when you realize the long hours families may spend in the hospice care wing.

His voice has been quiet and raspy, usually difficult to hear, through the weekend.  On Monday, it was suddenly clear.  We'd been warned that there would be a fleeting moment of improvement before the final time, but it is tough to not see that moment and hope.  On Tuesday, they called to report "a change in condition."   MM's sisters were there early and we brought his mom around 1.  He couldn't speak and his breath rattled.  He tugged hard at his wife's hand.  When the sisters left on an errand, his struggling got worse.  They gave him medicine to relax.  He got out the word "help" a few times, along with "I love you" to his family.  He let us know he wanted to see the digital picture frame and MM held it for him. I wavered between being unobtrusive and helping, when others couldn't speak through the tears, to tell him it was okay to go and that soon the pain would be gone.  As his breathing slowed, MM and his mom held his hand.  I tried to hold them as best I could.

I won't detail the time that followed.  Needless to say, it was hard.  I stepped away a few times to give them privacy.  A sister later said I needn't worry, that I was part of the family too (which made me teary again).  I'd been trying to bring water since I knew they couldn't focus on self-care.  A mention was made of ginger ale, a favorite of the father's that they suddenly craved.  The family kitchen had run out of the mini-cans they'd had for days and a volunteer told MM, who'd gone looking, that they didn't have more.  I offered MM a two-liter of Sierra Mist from the fridge, but he said specificity mattered.  I ran off with my purse -- somehow relieved by having a task, a way to help just a small bit.  I returned with four 20oz bottles from the cafeteria.  They laughed at my packed-full paper bag as I told them I'd bought the place out.  Okay, not quite true...I got one per person other than me...but it gave a moment of smiles and laughter which I think helped as much as the hydration.  Later, I helped by offering what I view as one of my personal gifts, putting together words for the first draft of an obituary notice -- at once brief but also long enough to honor the passing. 

Some other time, I'll talk about the complexity of feeling pain when in the presence of something much worse...that had characterized the earlier days and the prior visit.  Right now, I'll say that I'd never before witnessed someone's last moments.  It is an odd feeling.  I tried to speak when others couldn't and assure him it was okay to rest.  I knew he had a strong religious background so spoke to him of that and handed a prayer card to MM to read with his Mom.  I told him he'd soon be free of the pain that he'd faced for a long time.  I know he believed he would find a better place beyond this one, and that he hadn't wanted further efforts when the time came.  We all tried to offer comfort, but I still saw a fear unlike any other. 

Being in that room was hard, even when I knew it was harder for everyone else.  In no way do I think my emotions were as important as the family's, but I'll admit I felt helpless.  I wanted to help, but I simply couldn't.  I wanted to make it better for MM and his family, but it wasn't a feeling I could fix.  We (MM, his mom, 2 sisters, a minister for part of the time) talked for a few hours in the room, with moments of tears but also moments of smiles.  That seemed right.  I think a passing should be marked by sadness but also celebration of memories and of loved ones moving forward.   

Beyond that, I also realized something else....being in that room, being present at the moment between here and "there", helps bring a measure of a comfort in a time of great fear.  Perhaps more notably, being in the room, at that moment, is an honor. 

I don't know what lies beyond this world.  Still, I wish him peace, the knowledge that he was loved, and the comfort of knowing his family will mourn but will do so together.  And also that they will be okay, they will survive and move on to live their lives with his memory inside them.

emBODYment

I confess...I am pondering emBODYment..and playing with words to make them work for me.  This is really long...feel free to skip the update and go to the second section if you so desire...

UPDATE

I had a second round of diagnostic injections a couple weeks ago.  The second doctor at the pain clinic had been on leave and I pretty much wanted to throw her a Welcome Back party when the appointment folks said she had returned.  I knew it would be a better fit when she actually talked to me before the procedure and tried to make me feel less nervous.  After being belittled for being scared the previous time I had needles poked in my spine, I took this as a good sign.  I had about an hour after the injection where my pain dropped significantly.  I put it at a 2 on the ever-popular 1-10 pain scale...I can't recall the last time I hit a 2.  It only seemed to last as long as the anesthetic though, instead of having additional relief from the other meds in the cocktail.

I was able to schedule the follow-up with Lady Pan Doc.  She never once made me feel attacked, which was amazing after feeling so belittled every time I saw the prior Pain Don.  She said that the results really weren't what they would hope and that it indicated that it didn't make sense to move to ablation of the nerves.  She suggested she approved of the pain meds I'm on (SUCH a change from being called a wimp and told to just deal w/ a daily level 8-9 pain unmedicated).  I mentioned I really didn't want to need to use them for the next 50 years and she said I took the next words out of her mouth.  I also said that the maintenance meds did help but I was still pretty bed-bound and I wasn't ready to concede that I'm going to spend the next 50 years in this state.  She was completely understanding.

She wasn't sure what the next move would be but then mentioned that she figured I had already tried a different medication avenue.  I had not, so we are trying a medicine that really targets nerve pain.  She noted that patients have reported increased appetite on the medicine...people have put on weight but she said it was not the medicine itself but the increased food intake.  Given my history, that makes me nervous and it felt like almost being asked "How bad do you want it (i.e. relief)?"  After four months in bed, having to save up energy for a couple hours upright a week for dinner out or to see friends, the answer is clearly that I want it bad enough to deal with the side effect (Side note: Of course, the day before the appt I had ordered a bridesmaid dress based on my current size...the fact that my measurements landed me in three different sizes so I needed help from the store owner might be fodder for a future thought burst.).

The medicine can also make you a bit fuzzy at first so it is another one I need to build up over a few weeks...one week at one dose, one week at two doses, and then move to the goal rate of three doses a day.  My online research has a lot of folks reporting good results with the medicine, though they noted they did have to wade through a transition time until they got used to it and the initial side effects faded.  After a minor SNAFU (b/c it would be too much to ask that it work easily) of the script being sent to the wrong pharmacy, I started it last night.  I am also getting some form of cream that I need to have mailed.  I'll try this routine for two months and then return (happily scheduled with Lady Pain Doc again and not the evil other doc).

I asked Lady Pain Doc if I may be looking at being on this new medicine for life.  She said that, if it worked, it would likely be a lifetime thing.  I'm not thrilled with that, but I'll do it if it gets me my life back.  On the good note, it would, hopefully, mean I can eventually stop the other pain meds which would be really great.

emBODYment

So, my new word. 

I think one of the challenges of chronic pain is the complex relationship it creates between the patient and her body.   I have never been particularly healthy.  As an infant, I got seriously ill after every round of immunizations and battled what was apparently a horrific case of diaper rash (Side Note: Apparently this required a diaper-free day and infant me greatly enjoyed the brush with nudism).  The migraines hit pretty young, but it was the mysterious hives that first really started the feeling of being trapped in a malfunctioning body rather than just having my body be a part of me.  The relationship grew more tenuous with the endo.  I think women should be able to embrace their bodies and their womanhood, but the endo makes that really difficult to pull off the "I am woman, hear my roar" mindset.

And then there's the eating and body image issues.  Those are really all about how one relates to one's physical being.  My struggles with those demons made it difficult to feel at peace with my body.  Binging was very much my soul and mind mistreating my body.  Over-exercising wasn't really any better.  I felt like my body was the primary element of "me".  I have definitely improved in this light, but there's still a tendency to look in the mirror and fight with my reflection.  This is especially true as I've lost the muscle tone that made me feel proud and helped me feel like I was in better harmony with myself. 

Now, the struggle of chronic pain.  Facing severe pain on a daily basis means feeling trapped inside a malfunctioning body.  It is impossible to forget that I am a creature with a body.  My body overwhelms my mind and soul.  The pain gets bad enough that my mind can't operate fully.  The mix of pain and medicine means there are times when I can't string a sentence together....a frustrating feeling for someone who likes to write.  I still do some ghost-writing for attorney blogs but there are days when I can't get the focus I need because I can't think beyond the pain.  Some days, I can fight.  Other days, the pain is just too much and I succumb and the pain wins. 

Chronic pain means being constantly emBODYed (and making up a version of a word to express it).  I know that I am more than just my body.  Knowing that is an accomplishment and an improvement from the worst periods of body image issues.  But still, dealing with chronic, severe pain makes never forgetting that I inhabit a body, that I am, inescapably, emBODYed.  Never being distinct from, or in charge of, my body is one of the biggest challenges of chronic pain.

b/c i don't read ALL the time

I confess....it has been a bad week.  An unexpected increase in my expenses and less than lovely interactions with the X.  A lot of tears, which means a horrid not-responsive-to-Imitrex migraine.  But I really don't want to talk about any of that.

I am the type to leave the TV on in the background during the day but I only have a handful of appointment shows.  Please don't talk during them....I definitely "nest" rather than "hunt" when it comes to watching them.  I've given up a number of shows this year (NCIS, Good Wife) for one reason...or no real reason at all.  Or b/c On Demand is mean (see not updating Parenthood).  I hate to admit this, but I think the shows give my week a bit of structure and more normalcy than I might have given the long-term unemployment.

My appointment shows:

• Once Upon a Time -- I normally am not a fairy-tale, fantasy gal but I've been hooked since Day One.  I have a Bad Girl crush on the Evil Queen/Regina.  Some of the acting (the darn kid) leaves me cold but others blow me away (Mr. Gold/Rumpelstiltsken, Regina/EQ).  I love the gradual flushing out of backstories using different focal tales.
• How I Met Your Mother -- I joined this train really late but there are enough reruns that I'm pretty sure I caught up in a summer.  I'll agree that it needs to move on and a lot of this season has been less than lovely (house party ep sucked) but then they throw in an episode like this week's and hook me again.
• Glee -- I keep debating dropping this one, which MM wouldn't mind (though it does give him an hour to go play his Xbox game w/o me asking him to spend time with me).  This one is more a habit at this point and I suspect I'll eventually abandon it and just read recaps to see what happened since I do still have mild curiosity.
• The Middle - IMO, the most under-rated and under-watched show on TV.  It is just a simple family show, never "edgy" and always something that kids and parents could both enjoy.  The characters are well-done and it never fails to bring me a little joy and warmth.  The Hecks bicker but always have each others backs (often in secret, esp the teen boy).  It is one of the few, maybe even the only, show I can think of that rings true and real.
• Community -- It's coming back next month!!  Pure opposite in some ways of The Middle since it definitely is quirky and uses a lot of storytelling devices.  I love the characters and the relationships.  I do find it has a few "misses" for me (I hated the beloved Paintball episodes) but the "hits" are simply amazing work.  Creative and always different.  And it has Abed.  I love Abed.

Five shows...Not so bad, right?  Just don't call during them.  Or speak unless it is directly show-related and no one on screen is speaking at the same time (my ears aren't good at competing noises).