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.

on the new housemate

We got a cat. (Note: By far not the most important matter mentioned  just the only one currently mewing at my feet)

But, of course, that means little to some of you since, while I know my biggest group of readers follow me from Facebook I must allow myself the deception that someone reading this sought it out otherwise. So I'll add detail.

MM and I are quiet different.  Career Military/Pacifist.  Graduated for-profit college in early 30s/Graduated at 21 from a top liberal arts school.and didn't stop there.  Conservative/Liberal.  There are more, but you get the point.  One thing we do have in common, HORRID allergies, especially to all furry four-legged sorts.  He is also the only other person I've encountered who will shout dog when one appears on tv in case the companions missed it.  And perhaps we both really want to pet the tv in hopes it will somehow transmit to the actual dog.

But we've long said we'd never venture beyond the aquarium dwellers: fish and two aquatic frogs.

And...

There was an "AND."  A big "AND."

Well, to take the "just say it" approach, MM's Mom died.  There's not much one can add here; there never really is.  She'd been sick for over a decade, with on and off hospital stays so it both was unexpected and a surprise.  But she'd certainly not expected this turn when she brought a new (adult) cat home at the start of the summer.  Well, the four sisters declined (dogs in home, just plain uninterested) and, while I was made sure he considered the health aspects, my MM's a sentimental guy.  So we got a cat.

Day ONE sucked, but the generic Claritin D has helped (buy stock!).

And, while I tend to be a dog person, this is a lap cat.  She talks up a storm, She love to eat, but would pick a day without food over a day without companionship.

So, we have cat.  And we;re both suitably drugged.  And both in love,

on wholeness and invisibility -- more rambles on life with pain

I spend a lot of time thinking about the impact of chronic pain, how it touches every facet of life.  Heck, that recurrent thought is itself one of the side effects...I see it impacting my life and, although some might counsel doing so, just ignoring those impacts is impossible.  If you dig into the online pain community, you'll find many references to Spoonies.  The Spoon Theory is one woman's attempt to explain chronic illness to a healthy person, with a focus on the pure exhaustion.  It's worth a glance if you've never come upon it.

I also think about how these constant impacts can occur with very few outward signs, particularly with respect to strangers we might see at the grocery store or crossing the street.  I've said this before, but I look like a fit 30-something woman so no one expects me to move like an unhealthy 80 year-old (I know women near 80 who move a LOT better than i do!).  Aside from people not understanding why I'm fighting to get the soda in my cart at the store and why I need the handrail-side of the stairs, there is no way to explain, in the moment, how the pain (and meds) invade my brain and steal my words so I might grasp for the word "penny" when digging for one I know I have in my wallet.  Ironically, I can't very well explain the loss of words when my words are lost...long-term companions will get an explanation eventually, but the cashier I'm standing before and the angry guy behind me just see a fool.  And, to be a bit prideful, this is especially hard b/c I'm generally a smart cookie, especially when it comes to communicating.  It is common for tots to either walk or talk early and then be a bit later with the other.  I talked early and quickly got the hang of combining words....I think I walked even later (and less) because I could just SAY what I needed instead of getting it.  Not being able to "say" is frustrating/crushing/humiliating.  And that' just a single example....it goes on and on...

 

There are days I want to wear a big flashing neon light that says "Severe pain on-board" in the hopes it will explain some of my actions and, frankly, get me a little extra help (I could write pages about help offers, non-offers, the visibility of the issue at said time, etc.).  Yet, there are other days when I want nothing more than to look "normal".  (likely a grammar error, but I stand by it...grammar is about clarity and the outside period advances clarity).   The newest challenge for the latter days is that I hit the length of disability needed to be Medicare eligible which feels so awkward, even if the only people who I need to reveal it to (ummm, besides the Internet) are at doc offices and pharmacies and many of those people know that Medicare is for more than just the elderly.  Still, this has hit hard; the need to say Medicare and have it mean me is almost outside of my comprehension. 

Anyway, Sunday night ramble done.  Reply if you wish.  I may soon solicit input for a future post and hope I'd be able to get enough.....prob will have to turn to my FB to get enough....

Hope you all have a lovely week.  Thank you for visiting....there's been an atrocious pain spike for a few days and it does help to know some folks out there are watching (and maybe learning) from my rambles.  

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.

The Note: Disturbing Example of Poor Writing Skills from Local Student

Really, I blog quite often.  Unfortunately, it is in my head and somehow that doesn't make it magically appear here.  I also do six posts a week for my ghost-writing gig and that's taken a lot out of me these days.  This AM was one of the times I stared at words for long stretches with no idea what to do with them and had trouble rephrasing parts of a news story.

This story has been sitting in my head (and, partly, in a drawer) since May 28.  It was while my treadmill was broken and I had to walk outside (MUCH harder on my back).  I was walking across the street from our high school and it was just starting to drizzle.  I spotted a folded up piece of paper and felt compelled to snoop.  It turned out to be a note.  A love note.  There was more rain on the way so I knew putting it back wouldn't do much good....if the recipient even found it, the note would be destroyed.  I feel guilty, but I kept it.

Part of me thinks the note is cute, with the sender marking the anniversary of sitting next to the recipient in Spanish class and realizing he (well, I'm going with "he"....I'll get to that) was in love with the recipient.  A bigger part of me alternated between amused and pretty darn upset.  The author is either a junior or senior and, even granting that a note doesn't always require perfect grammar, the poor writing quality is disturbing.  A few examples:

•  "Remeber" instead of "remember"....multiple times
• Refers to being told to "site" instead of "sit"
• "I new I loved you.  I new, I wanted you"
• "For ever" instead of "forever"....twice
• "Allways"
• Mentions wearing a "flanel"
• "I remeber what you where wearing to" 

It is also a bit confusing (yes, I've spent too much time pondering this letter!) since the author signs it "Your Boy" while referring to the recipient saying "(Female name)...will you site with me today?"  Given my views, I'd be all in favor of a teen being comfortable being transgendered in high school.  However, it is probably more likely that the author is a male and the quote is just another error.

I still feel a bit guilty having the letter.  I'd have put it back where I found it if it wasn't clear it would be destroyed by rain anyway.  But, I admit, I've also gotten an odd level of enjoyment from watching a few people read it and take in the errors.  I've read it several times and I'm still shaking my head as I write this. 

It really does upset me that this is the product of my local schools.  I had a similar reaction to some of the papers submitted by the X's college students.  I feel like we've done a disservice to this student.  I've certainly heard about worse stories, including the number of people who manage to graduate while being functionally illiterate.  Still, I can't imagine a future employer reading something written by the note's author, even a simple note written in a job that doesn't demand a lot of writing. 

I know many wonderful and committed teachers and imagine this has to be more of a system-wide issue than about specific educators.  I want to bring the note to a school board meeting.  I either want to demand my tax money back or demand we invest more funds specifically aimed at literacy-related skills.  I may be biased given my love of both, but I feel that there are few skills as crucial as reading and writing.  Shaking my head isn't fixing anything, I know this.  I need to find a way to do more (though it may need to wait till I have more mental energy). 

Side note: I know the grammar in my blog is FAR from perfect. I admit I don't always proofread. Still, I hope any errors don't distract from the content and don't rise to the level found in the note. 

meanderings

The Background
In a show of stubbornness, I've often devoted the hour or so I can manage out of bed each day to the treadmill.  The treadmill provides a safety net since I don't run the risk of getting stranded far from home if the pain beats my will.  The docs have essentially said that the walking isn't likely to cause greater injury, although they all seem surprised that I keep at it.  Honestly, it helps me stay sane.  The endorphins help during the walk and I just try to put the inevitable bounce-back of pain out of my mind.  It helps balance things out....the pain of my body and the old body image demons in my brain.

This week, the treadmill broke.  There may have been tears.  Miraculously, there were nine days remaining on the labor side of the warranty (the motor is lifetime).  Thankfully, our call in sets the date on this end, so we're covered even if it takes a bit to get the part and then get the tech out. 

It was with a great deal of trepidation that I decided to take my walk outside.  I am afraid of getting "stuck" but the mental need to exercise is stronger (esp since there's a dress shopping trip at the end of the month). 

The Meandering
I've meandered through Bellefonte twice so far.  I'm reminded how lucky we are to live in a town that loves its parks.  I can think of four separate parks in our town, all within a few miles.  Although not the closest, I also appreciate that the "Down, Around, and Back" loop (well, more accurately a "lollipop" shape) through one of the parks is almost precisely two miles.  My head (which appreciates the numerical feedback of the 'mill and demanded I find an "app" to give me numbers outside) likes that.  Another park is closer, but has a nasty hill that pushes to the side of "too much pain". 

In addition to parks, we also have multiple cemeteries...which seem to me both very similar to parks and very different all at once.  I noticed that the most interesting of Bellefonte's homes face onto the main town cemetery (the one not tied to a church).  The homes alongside the town cemetery have colors and shapes that make them notably unique.  I suppose that makes sense, only certain people would be comfortable with the location and that group probably tends to include some of the more eccentric types.  And you might as well construct the home your heart desires when you already know there will be a special challenge if you ever sell.

The cemetery itself is remarkable.  Apparently they offer tours, although I've never noticed any mention of the tours beyond a sign by the cemetery entrance.  There are stones from the turn of this century and the turn of the last, with one spot having a 2012 memorial next to one from 1912.  Apparently there are much older memorials as well, with the cemetery dating to 1795.  Skimming headstones as I walked by reminded me how recently it was that the loss of infants and children was a more common reality.  One family stone included the spouses and two children, both who passed before their second birthday.  Many of the women's names were followed by "his wife," although fewer men were noted as "her husband."  Though there was one stone that marked three losses, with the titles "Wife, Husband, Wife" above the names. 

This didn't feel nearly as depressing as it might sound.  It was a lot to ponder though (and more complex than my "treadmill fodder" of  Gray's Anatomy or Four Weddings).  I also appreciated the economic diversity I saw.  I passed some tucked away homes with large lots and more rooms than I could imagine.  I also passed some rundown apartments and townhomes, places that clearly don't have a hired gardener to weed around the beat-up parking lots.  An impressive mix, especially since I never wandered more than two or three miles from home.

I've managed two outside meanderings.  And physically paid the price for the added work of an outdoor walk.  My head is pressuring me to keep this up, my body is not so sure (again, no reason to think it'll cause damage so not a long-term danger).  I've hurt at night.  A lot.  But I've enjoyed the new view.

the beauty of the race

A story --

Once upon a time, when my body was friendlier than it is these days, I ran a race on a whim.  I'd called myself a "gym rat" -- I didn't quite feel worthy of the term "runner" since I was a pure treadmill gal.  But I'd acquired some decent mileage and, without telling anyone other than the X since he was driving me, I signed up for a half-marathon.  It was a smaller race, so there weren't really any spectators and towards the end we were spread out enough that I couldn't always see another runner.  It was in September but turned out to be a freak 90 degree day with high humidity and there were constant "rolling hills," making it clear why one should run outside at least once before embarking on 13.1 miles. 

A key lesson I learned that day was that running any sort of distance requires both physical and mental stamina.  I didn't wear a watch and they only marked the distance at the mile points.  I did eventually take some walk breaks, but it took a lot of will not to stop entirely.  I'm fairly certain they didn't bother marking mile 13, either that or I simply missed it, and few curves meant I couldn't see the person ahead of me nor could I see the finish.  I was tired and hot. 

And then, I spotted her.  She was sitting on the curb, with her own number still attached (there was also a 5K and 10K, but I'm pretty certain she'd done the half).  She met my gaze, smiled, and shouted "You got it!"  And I welled up with tears...and I still do when I recall the moment...as I ran by her and spotted the finish line and the small crowd, as well as more than a dozen other folks who cheered and shouted final-step-encouragements...I'd have guessed it was for someone else if I hadn't been the only one passing by (I finished smack dab in the middle of the pack, 2h1m55s...I'd have shaved off those pesky 2m if they had course clocks).

The point --

There's a quote that circulates after tragic events from Fred Rogers (whom I've sometimes found a bit creepy but have had to admit is simply a truly good man): 

“When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping.”

Often in the wake of tragedies we remark upon how bad times bring out the best in people.  We saw people helping strangers after Hurricane Sandy, even opening their homes to those who'd lost their own.  And we've heard stories again in the wake of the bombings in Boston, people giving food and clothing to runners, even a story of a man giving a stranger his finisher's medal because the woman was diverted just a short distance away from the end. 

Like many others, I've often remarked on how it is a bit sad that it takes tragedy for us to come together.  But, this isn't always true.  One of the beautiful things about the Boston marathon, and many other distance races, is the role of the spectators, strangers who cheer on the runners.  And not just the elites, but the "average" (to the degree that anyone who can finish 26.2 is average) folks...the ones approaching the finish after 4 plus hours on the course.  Spectators are known to even call out runner's numbers, just to make one specific stranger feel encouraged. 

There's such beauty in that.  It is a reminder of good, the good that's quietly in most people.  I can't fathom targeting that good, that beauty.  My heart goes out to those hurt and the families of those killed and even to the runners who were robbed of what should have been a beautiful day (and I wonder how many feel guilty secretly being angry they couldn't finish...they were robbed too and should feel justified in their own hurt).  May it bring them some small comfort to know that the good will continue, that the good outnumber the wicked, and that the spectators will continue to cheer and the runners will continue to run (or walk while running in their heart). 


An added note  -- For those unfamiliar with the details of the Boston Marathon, an added note.  Boston is not a general entry event.  There are two ways one can take part.  The first is to "qualify" which means completing a prior marathon in a set time, a standard that varies based on age and gender, but one that requires a pretty strong finish (for me, a 35yo female, the 2013 time was 3h40min...I'd get an extra 5min at age 36).  The other way people are able to participate is running for charity.  Many of those, and their supporters and the other spectators cheering them on, were likely the ones in the vicinity at the time of the explosions. 

Endo Awareness 2013: Week Four - The Things That Get You Through

It's the final week of Blogging for Endometriosis 2013.  I've enjoyed the chance to contemplate my experiences and share them with the endo community and with people who may be new to this battle (patients, partners, parents, pals....). 

This weeks' focus is on the tips and tools for staying sane and generally being an endo warrior.  There are plenty of material items that can help.  Just a sample:

• Heating pads - Pelvic Pain Solutions offers some microwavable pads shaped for the pelvic region with a belt that allows you to use it while going about your day or simply keeps it from sliding off if you are in bed. They are more natural than most products.  The boyfriend thinks it smells a bit like popcorn.
• Pain patches - A similar idea.  I actually love capsaicin patches for both my back issues and endo....though they do mean it when they warn not to shower too close to wearing it and I'd add don't get sweaty too close to wearing/removing it.
• Bed (a comfy one that feels like you) - Sometimes you just need to lie down (often in the fetal position).  The right pillows and blankets just help you relax.
• Stuffed animals - When I mention that I often hold Teddy MM (really called Teddy "insert fiance's name here") when the pain surges, I find so many women relate.  It helps to hold something really tight, tighter than would be ideal with an actual person.
• Books/TV/DVD - Sometimes you need distraction.  Sometimes it has to be fairly low effort and brainless. 
• Medications - Are they ideal? No.  Would a cure be a million times better? YES!  But pain medication helps women with endo (or anyone with chronic pain) cope.  They allow you to function or simply allow you to sleep.  Medication is a personal choice between a patient and a doctor (though patients shouldn't hesitate to change providers if their views on meds don't match).  Yes, people abuse pain meds.  They also have a purpose.  People can be physically dependent without being addicted....the fact that a patient may have withdrawal issues and may need regular doses does not mean she's an "addict" or an abuser.  I don't think it is a decision that anyone else can judge. 

These items help.  The right people help too.  Those of use who are lucky enough to have supportive partners appreciate them more than we can ever express.  Same for friends and family who listen or offer to help with errands etc. 

There's also the world of Endo Sisters.  You might find one in person, but many of us have found them online.  There are blogs and communities where you can find women who just plain "get it."  This is invaluable and I might go so far as to call finding a community a "must" for newly diagnosed women (I wish there were more aimed at partners of women with endo).  In many of these places, you can ask the most embarrassing, personal questions and receive actual answers and support (look for CLOSED groups on FB....the posts there will not appear on your timeline or in newsfeeds).  The majority of endo sufferers also fight other ailments and you'll find support on those too (meaning no one will chastise you for going off-topic).  Beyond the advice, these women provide motivation.  They show you that there are FIGHTERS out there, BRAVE women who make the most of the life they've been given.  I admire so many of them and I am proud to call them Sisters and friends.  Thank you all for supporting me (a special thanks to one Canadian endo sister whom I've "known" for many years). 

Endo Months Week 3 - Social Impact

The Week 3 topic for the Blogging for Endometeriosis Awareness 2013 campaign is the social impact that endo has had on your life. For the first time in the campaign, I find myself staring at a blank page.   This is not because I don't have stories to share, I'm just not sure where to start. Once again, my thoughts about endo overlap with my thoughts about my back problems and my comments apply to chronic illness in general. 

When I started dating the man I refer to as MM (for "Military Man"), I felt the need to give him a few bits of information about me. These tidbits were more accurately characterized as warnings. I wanted him to know what he was getting in to and give him the chance to bail guilt-free before things got too emotionally involved. Ironically, I wasn't really able to warn him about the back issues that have really dominated the past couple of years. However, the warnings included the fact that I had endo and that the pain was a significant issue in my life. He replied that he grew up with four older sisters, felt pretty adept when it came to "girl issues," and was "not scared yet."  While I was pretty sure this went beyond his sibling-based experience, it still made me smile.  And it wasn't all that long till he faced a flare and he fared well....and I made sure to reiterate the "bail guilt-free, but do it now" message a few times in the early goings (and the middle-goings too when the back became life-altering).

The truth is that this warning was motivated by experience. I had ended a marriage not long before (well, mentally/emotionally ended, the legal process took longer), a relationship of eight years. I don't want to say that endo caused the dissolution. That's far too simple and sounds far too accusatory. Ultimately, it was a matter of incompatability. But the fact that I was not "healthy" added to the mix. It meant I was tired a lot and being social has always been a bit difficult for me since, as a textbook introvert, socializing often takes energy from me rather than adding it to me.  X wanted a more active social life, not only was I not sure I wanted that (don't get me wrong, I like to go out and play, but I'm still mostly a homebody) but also knew that I really didn't have it in me.

I also need a bit more caretaking from my partner than I'd like to admit and that wasn't the relationship X envisioned. He had seen me through the diagnosis and the three endo surgeries (for me, these were relatively simple surgeries), but he hadn't really contemplated how it would impact our lives. In one particularly frank discussion in the days following the decision to end it, X admitted that he'd pondered breaking up when I first fell ill, but he didn't want to be "that guy" and leave a sick partner. I do understand this. However, and this is why I told MM so many details upfront, I ended up wishing he had left then, especially before the "I do"s.   Illness impacts a life in many, many ways. It also impacts relationships, especially romantic partnerships. I do not think less of anyone for saying they aren't equipped for having a chronically ill partner, but I urge anyone to be honest upfront. If you are looking at a relationship with a woman with endo or with a partner with any other chronic illness, you owe it to yourself and your potential partner to be honest and to give it a lot of thought. It is better to say no early than to do so after a long involvement.

MM and I are now engaged. He's been an amazing partner and a wonderful support through some hard moments in the chronic illness journey.  I tout the five hours by my side in the recovery room, bu it is really the day-to-day that is most impressive and most appreciated.  That said, as we look towards the big next step, I hope that one day we get more of the "in health" side of the game!

While I'd like to end on that witty (at least in my mind!) note, I have another thought I want to share. Chronic illness, including endo, can become all-consuming.  It makes it hard to invest the energy in forming new frienships and nurturing old ones.

I have been mulling this a lot recently, regretting that I've let some friendships lapse. I can cite a lack of energy, tied to chronic health ailments, and plenty of other causes.  But I also need to take more ownership.  Even if visiting is tough, I have times when I could write a note or make a call (I am not a phone person).   I have one particular friend in mind, a woman I've known for many years who has done more than her share in our friendship.   She's visited and offered to host and she left more than one message in some of the rougher days.  The connection has fizzled...and it is my fault. I am sorry and I owe this friend a more than just a reference in a blog entry she may not read.

Any relationship with someone who suffers from a chronic illness requires special care and understanding.  "We" only have so much we can handle (see the Spoon Theory for a helpful discussion of this concept) and we need to focus on social relationships that are positive.  I could write plenty of advice on being a friend to or partner of a "sick" person.  However, the "patient" also needs to do her share, especially in the phases that are more about every day management than the days just after a diagnosis or the time around a procedure.  Illness makes social relationships hard and, to use a favorite concept, I think this can be an explanation. But, and perhaps this will be a bit controversial to say in the Endo Month blog campaign, that doesn't always make it an excuse.

Endo Month Week 2 - The Mental Impact

This week's topic for the Blogging for Endometriosis Awareness Campaign is the mental impact that endo has on your life.  Again, I do want to provide a link to my post from last year, although I won't promise that this won't hit some of the same territory. 

As I've pondered this topic (I still push myself to do daily walks and I've "written" countless blog posts during that time, most of which never make it to the blog), I've considered how to distinguish between the mental impact of chronic pain and endo.  I've also considered whether a distinction is possible for me and whether or not it is productive.  I've decided to start with a broad pondering of the mental impact of chronic pain followed by some more specific thoughts on endometriosis.  I can't promise they won't overlap....in fact, I can pretty well promise that they will.

The truth is, endo has always been primarily about pain for me.  And the mental impact of chronic pain is enormous.  The following list is FAR from comprehensive, but provides a glimpse into the impact that chronic pain has had on my mind and my psyche:

• Chronic pain is EXHAUSTING.  I sleep a lot, because of the pain medicines, because my sleep is often interrupted by pain, and because the pain simply wears me out.  This is true even in my current "semi bed-ridden life."  It was also true before the back issues, when endo pain would flare at least a couple times a week even with the hormonal treatments (i.e. continuous birth control).  I learned how to "put on my game face" and get through work and other obligations, but it was exhausting.  By Friday night, I wasn't good for much beyond pizza, wine, and a DVD....which had its own impact on my relationships. 
• Chronic pain is also MENTALLY EXHAUSTING.  The pain pushes everything else out of my head.  I can't concentrate.  Some days, I've been pretty well tongue-tied by pain, especially on the phone (talking on the phone has always required more effort/energy for me).  Struggling to find my words is incredibly frustrating for me.  At it's worst, the pain has been so mentally exhausting that I just end up staring at the ceiling for hours on end....even the simplest of television shows requires more than I have.
• Chronic pain is EMBARRASSING.  I talk about pain.  Probably too much.  Which seems to be in contradiction with this comment.  I talk about it because I need support, because it explains a lot about my behavior (note: explanations are NOT excuses, a topic I've rambled about before), and because I hope to one day make at least one pain sufferer feel less alone.  Still, it is embarrassing to move like an 80 year old when you are in your 30s and to be a prisoner of your body.
• Chronic pain makes for a COMPLICATED BODY/SELF RELATIONSHIP.  I didn't need this to be complicated anymore, having struggled with body image issues (along with eating and exercise issues).  Even putting those issues aside, it is hard to feel truly "at home" in one's body when that body is the source of chronic pain.  I previously rambled along a similar line using the term emBODYment.
• Chronic pain can lead to GUILT.  Pain Shrink says he's spent countless hours counselling pain patients on guilt.  This often includes feeling guilty complaining about or even just being impacted by pain when other people face "more serious" ailments (ex. feeling pain while a relative battles cancer). 
• Chronic pain leads to DOUBT.  Most days, the vast majority in fact, I know my pain is VERY real and that it is indeed often crippling.  Most days, the vast majority in fact, I know I use pain medicine responsibly and as intended.  But doubt is contagious and seeing and hearing it so often from people who cannot see behind the "you look healthy" exterior, wears on you and sometimes you feel it too. 
• Chronic pain STEALS.  It steals my mind.  It steals my relationships when I can't nurture them.  It steals my days when I can't get out of bed.  It steals my joy of reading when I can't focus well enough to get through even a page.  It steals my hope, when it feels like it has been so bad for so long that I can't imagine anything different and stall waking-up because I fear (sometimes "know" is more accurate) the day will only hold more pain.

There are some mental impacts that, for me, are more specific to endometriosis (although they could apply to other diseases of the female body)....

• Endo complicates one's relationship with WOMANHOOD.  This ties back to my comment about pain complicating the relationship with one's body.  I've never felt supremely tied to womanhood, a trait I admire in women who are at home with their bodies in a certain way.  Endo makes this even tougher -- it is a disease of the female body.  It is hard to feel in touch with womanhood while cursing the existence of uterine tissue and hormonal flows (and, per a gyn, you do still have fluctuations even on CBCPs).
• Note: Another blogger made an interesting and important point that I want to add (please respect that I felt this important enough to add but that I do not want to turn this post into a debate about gender and sexuality...let's talk about it sometime, but not now), we talk about endo as a women's disease but saying it is a disease of the female body is more respectful of transpeople.  While I am not correcting my language to show this, I do note that it must be horrific to identify as male and have a disease of the female body.
• Endo means EXPLAINING, a process that adds to the physical exhaustion of pain and illness.  There are still many people who've never heard the word or who just don't know what it means.  No, it is not "just bad cramps"...I don't question that some women have very painful cramps (though I bet some have undiagnosed endo)...but calling endo "bad cramps" ignores the severity of the pain and the other issues that arise with endo.  Yes, it is a real illness.  Yes, it can be debilitating and disabling (it isn't constantly disabling for me, but at times it has been debilitating).  Yes, it can cause infertility, and for many that is the most significant manifestation, but not every endo patient will have fertility issues (it depends on where the tissue growths are located). 
• Endo means living in the world of INVISIBLE ILLNESSES.  It means getting all the "but you don't look sick" comments.  It means no one offering a helping hand at the grocery store.  In my train commuting days, it meant sometimes being in horrific pain but, with no visible disability, there was no reason why anyone would offer me a seat.  I may not have needed it in the same way as someone with a more physical disability (ex. someone using a walker), but somedays it was VERY hard to stay upright and steady when it feels like there's a knife in your lower abdomen.  Asking is hard, even though most people are kind, there's a fear of facing the doubters.  I try to remember my own experience with invisible illness when someone who "looks fine" steps out of a car in a handicapped spot. 
• Endo also means dealing with other symptoms, like HEAVY FLOW (and, as noted above, infertility....which isn't a struggle I've faced so I can't discuss it firsthand, but I know from hearing other women's stories that infertility has a very significant mental impact).  I had very little mental stamina after the first few days of my period because I was so tired, afraid to sleep more than two hours in a row without changing my protection.  This also meant fearing long trips and constantly needing to keep an eye out so I'd know where the restroom was at all times.  The pill, even taken traditionally with the placebo week once a month, helped this a lot. 

There's more.  And I'll think of more as soon as I hit "publish" but editing can be never-ending and, unless I feel something is too big to leave off, I'll just trust that "there's more" is good enough.  Actually, THAT is a big one...a major mental lesson of both endo and chronic pain in general....sometimes you need to accept "good enough" because some days that's your very best.

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. 

Taking the Lead

I confess...I don't "do" resolutions.  I've grumbled on that before and feel no need to elaborate,  This isn't a true resolution, but it is a goal.  It is a goal I'd love to meet in 2013 but that might take a bit longer.  So, what is this goal (or maybe "hope" is a better word)?

Initially I had a long-winded ramble here about the past month and a half, but it isn't necessary.  In truth, it has been a stretch of "busy for me" weeks that might seem normal to someone else.  Some of the days might even qualify as simple, with the major tasks being a trip to the store and a couple hours of cookie baking.  I've lived a normal life, but not the life I'm currently able to lead.  And I'm hurting.  More than the normal hurting.  It is abundantly clear that I cannot live that life.  My life, for now, means spending most days in bed, conserving energy in order to have a decent dinner date with MM, and saying no to trips I'd like to (and should) make.

I've come to realize that the entire experience has one underlying theme (NB: I struggled b/w theme and mantra) -- My body takes the lead. 

When I consider an invitation, I start by considering my body and whether it could handle the plan.  This doesn't reject ALL plans that it can't handle, but those have to have a strong reason like a wedding or a serious health incident.  Even then, my body influences how I go about the event, planning rest and medication schedules.  I also need to plan a rest period (even beyond my normal rest mode) after the event ends -- it's typically a one-to-one ratio with one total rest day for each day I lived a semi-normal life. 

My goal? For my body to follow, to support, to permit.  I aspire to one day let my mind, my soul, my spirit, my true "Me" take the lead.  I hope to be me-driven, not body-driven.  It'll take time, probably another round of surgery followed by both TLC (a challenge in itself) and a lot of work.  But I WILL get there. 

trying to understand what is impossible to understand

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

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

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

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

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

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

I'm avoiding the other issue knocking around my head.  I think we need more gun control.  But that'd be a whole post in itself.  I'm also going to resist the urge to add more each time I have a thought....it'd never end if I did.  I've rambled a bit, I've thought a lot more.  It isn't a process with an end so I'll artificially hit "Publish" soon and resist adding more each time I realize the things I forgot to write.  Instead, I want to say the names of those lost on Friday (including the first victim, shot in her home, but not including the shooter himself). 

• Charlotte Bacon, 6;
• Daniel Barden, 7;
• Rachel Davino, 29;
• Olivia Engel, 6
• Josephine Gay, 7;
• Ana Marquez-Greene, 6;
• Dawn Lafferty Hochsprung, 47
• Dylan Hockley, 6;
• Madeleine Hsu, 6;
• Catherine Hubbard, 6;
• Chase Kowalski, 7;
• Nancy Lanza, 54
• Jesse Lewis, 6;
• James Mattioli, 6;
• Grace McDonnell, 7;
• Anne Marie Murphy, 52;
• Emilie Parker, 6;
• Jack Pinto, 6;
• Noah Pozner, 6;
• Caroline Previdi, 6;
• Jessica Rekos, 6;
• Avielle Richman, 6;
• Lauren Rousseau, 30;
• Mary Sherlach, 56;
• Victoria Soto, 27;
• Benjamin Wheeler, 6;
• Allison Wyatt, 6.

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

I confess....I had to do it twice, because my first random number generator result gave the "win" to the TLC Book Tours editor.  So, I did it again and the winner of my first ever giveaway is (of course, it needs a bullet-point!):

• Tricia from Iowa!

Congrats, Tricia, and thanks to everyone who entered (I was so worried I'd have NO replies at all and feel silly)! 

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

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

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

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

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

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

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

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

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


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

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"

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. 

"health" information, or lack thereof

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

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

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

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

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

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

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

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

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