On the radio, whoa-oh-oh-oh

Does anyone else remember that groovy disco song by Donna Summer? Circa 1979? If so, I hereby apologize for the earworm. If not, here’s a link so you can join in the repetitive dance magic.

Why are we talking about the radio??

Well, today was quite an unexpected frolic in the world of self-published bookdom. I was interviewed about my book by a local radio station! Say what?!? I gotta admit, that was NOT on my “let’s write a book” bingo card. And it sort of came out of nowhere. I remain amazed. And grateful.

A couple months ago, I was minding my own business on my heating pad when an email appeared in my book’s dedicated account. The email address appears in I’m FINE.’s final paragraph, inviting people to reach out and know they have a friend if they want to talk about the messiness of life with chronic pain. Much to my delight, I have actually heard from a handful of folks! Including Susan.

Susan has scoliosis. Her husband read an article about my book, bought her a copy, and she’s now an enthusiastic fan. God bless her!

Susan also has a demanding job. She is the president of a non-profit community radio station in the Portland, Oregon metro. The station has a Book Talk show hosted by Patty. Without me having a clue, Susan lobbied Patty to interview me for her show. So that’s how this happened at about 2:00 this afternoon.

Apparently I was animated?

I tried really hard not to be nervous. I prayed in my car in the station’s parking lot before going in. I focused on being authentic, acknowledging my newbiness to the associate program director (Connor) and unabashedly snapping a few photos as proof and social media fodder.

Having spent trillions of hours (ok, fine, about 60) recording my audiobook, the headphones and fancy microphone thankfully didn’t freak me out. I was calmly sipping water and focusing on my steady breathing when suddenly, Connor counted down with his fingers and indicated to Patty that we were now recording.

Have you ever seen that Brady Bunch episode where Cindy is on a kids' television quiz show? And she’s all confident and self-assured until the red light illuminates on the TV camera, at which point she freezes? Yeah. The sense of “YOU’RE ON!!” is pretty freaky! Although my incapacitation wasn’t nearly as bad as Cindy’s, I did have a fleeting moment of wondering if Rob was telepathically yelling “BATON ROUGE! BATON ROUGE!” from the other side of town.

Fortunately, I had listened to several of Patty’s prior interviews so when she started her introduction, I was calmed by the familiarity and settled down, unlike Cindy.

How did the interview go? I have no idea.

Patty asked about my book, why I wrote it, the writing process, feedback I’ve received, unintended audiences, coping mechanisms for living with pain, the emotions of chronic pain, silverware. Yes, we covered a lot of ground in just 26 minutes!

But I can’t tell you much else. It was a blur. A blur of excitement, gratitude, anxiety, wonder, and focus. With each question, I had to quickly decide how far and deep and wide to go with my answer, knowing we had limited time and wanting to get to the point quickly but thoroughly. Predictably, I had much better answers when I returned to my car after saying goodbye to Patty and Connor.

The interview was recorded, so it will air later with a link provided on the station’s website. So for better or worse, at some point soonish, I will get to hear how it really went. I’m both excited and terrified.

Patty said it was good interview and was “super fun” so that’s encouraging. And Connor was inspired afterward to share his own chronic pain story – one that involves footballs and mountain slopes (not at the same time but still a much more impressive story than “I coughed.”). I consider it a gift that my conversation with Patty made Connor feel comfortable enough to reveal he, too, wears a mask.

I gave Connor my card – with my email address – and invited him to please reach out if he wants to commiserate about living with chronic pain. I really hope he does. Because that’s the whole point.

 

 

Painful reminders

Two weeks ago, I was sweaty from being outside so I wanted to take a mid-afternoon shower. How decadent! With apparently too much enthusiasm, I lifted one leg to extricate it from my pair of lightweight yoga pants (which have never seen even one minute of yoga in their lives). In an instant, I regretted living on the edge like that, recklessly taking off pants. Because the muscles in my lower back – specifically on the right side – seized up in a bad and familiar way.

I pleaded, “No! No! Nooooo!” as the rest of the clothes in my closet stared at me unflinchingly, seemingly telling me I should have known better than to take off pants without holding onto something. In the background of my pleas was a horrifying sound. In the immediate vicinity of my right lumbar region, it sounded like Velcro was ripping apart. That was not a sound I had ever heard my back make. It thankfully wasn’t that horrible popping sound my ACL made when I tore it 9 years ago. But super-duper terrifying nonetheless.

Naturally, I was home alone when my back betrayed me yet again. And I would be for the next 6 hours (Rob was flying home from an extremely quick trip to California). I tried to remember to breathe, I hobbled around, I convinced myself I wasn’t going to die in the short term, I applied my favorite ice pack, and I made spaghetti (my comfort food) as I waited to see what my body would do next.

Over the following days – gratefully with Rob’s help – my trusty walker was retrieved from the garage, plans were canceled, visits and church services were experienced from a reclining position, and I groggily greeted each morning in the after-fog of nightly muscle relaxants. I focused on ice and anti-inflammatories for the first 2 days, then switched to heat and pain relievers with the knowledge of far too much experience. I also repeatedly reminded myself that – like always – I would be pretty much back to my version of normal in just 7 to 10 days.

Except I wasn’t. I’m not. Not yet. And it’s been really deflating.

Don’t get me wrong – I am WORLDS better than where I was when the searing pain radiated throughout my lower back two weeks ago. My walker is back in the garage, I can dress myself, I can drive. So I am definitely getting there.

But I’m still not a fan of sitting for more than about 15 minutes, I can only stare at soap when I drop it in the shower (twice now; it’s a frequent occurrence when my pain is ramped up), and I am not ready to wear jeans yet. Determined not to develop an irrational fear of pants (the last time my back seized up like this, I was putting pants ON), I’ve forced myself to at least wear shorts. While I am enjoying rediscovering the dresses in my closet, the 80+ temps are only going to last for a few more weeks. I’m going to have to be courageous and wear pants eventually.

Yes, I could use body wash -- and I do
have some as back-up. But it comes
with its own challenges which make
bar soap a better option for me.
Usually.

Well, actually, I HAVE worn pants! After several nights of waking up every time I wanted to switch positions in bed and being sort of stuck by the friction of the sheets and my pjs, inspiration directed me to Amazon.  A Prime Day later, I had some surprisingly cheap but effective satiny pajama bottoms that have revolutionized my sleep. Apparently, now anytime I want to roll over to my other side, I just slip and slide over there. I don’t know for sure because…I am blissfully asleep! Why has it taken me over 25 years to figure out this sleep hack?!? Not to mention, I feel sort of girly and slinky wearing satin pajamas! Ah, the (eventual) wisdom of 56.

Beyond the satin jammies, the past two weeks have brought other revelations. Like, I hadn’t really appreciated how GOOD my back has been doing lately, given its standard state of titaniummed fusion. Yes, I live my life with lots of modifications and accommodations. But I am still able to do quite a lot. And I have mostly accepted the stuff I can’t do. The past two weeks have been filled with new and seemingly endless can’ts and it was hard to not wallow a bit.

I am now mostly at the point of being OK as long as I don’t want to sit for more than a quick drive to the store. I made the mistake a few days ago of sitting at my computer desk, tapping away at the keyboard with frustration as I discovered some shortcomings with a local credit union. I sat at a desk and got stressed – and paid for it dearly as soon as I tried to stand up. As I clung to the railing to get downstairs one slow step at a time, I suddenly remembered…this is why I don’t have a job. I’ll be honest, there are days when I desperately wish I could work and wonder if maybe I could handle having a job after all. At unfortunate times like these – these days of being a daredevil by wearing pants – I am smacked back to the reality of my life and the gratitude that I can take the time I need to recover without impacting an employer or coworkers.

Friends have kindly been checking on me, as I’ve not really had the energy to try to hide the pain. Or…I’ve been uncharacteristically quiet. Either way, I’ve been touched by the concern and sort of confused how best to answer. Overall, I’m doing ok. I’m getting better. I’m reinfused with appreciation for my usual daily existence. And I’m working up the courage to wear pants.

Oh, and that Velcro ripping noise? The one I thought was a back muscle tearing? Yeah, pretty sure it was actually my knee. The knee that makes crackling noises going down stairs – and has done so for enough years that I don’t really listen to it anymore. Ah, 56.

 

 

They’ve got my back

There is no medicine more powerful than empathy. There is true, unique healing that comes from the depth of understanding of someone who has been down the same path as you. Been there, done that, have the road scars to prove it. The commiseration of shared experiences is the foundation of empathy. “I know how you feel because I’ve been there, too.”

Sympathy – the expression of sorrow and sadness and compassion and imagining how it must feel – can be a wonderful embodiment of love and friendship, but it is not quite the same as empathy. “I am so sorry for your pain. I can only imagine how much this must hurt.” Sympathy is more at a distance while empathy is full in with sleeves rolled up and hands in the muck.

When I went through my back surgeries in 2000 and 2002, I had nobody to commiserate with. I was barely in my 30s; “spinal fusion” was not a road anyone I knew had even considered traveling, let alone heard of. Everyone in my world was more focused on career growth and stock options and day care pick-ups.

The internet existed back then but social media didn’t so there really wasn’t any way for me to meet folks empathetic to my back brace, walker, zipper scar, tingly feet, and terror that the pain might never go completely away.

The closest I got to an empathetic moment was one day in my surgeon’s waiting room. Another post-op patient and I were chatting, both standing up because sitting still hurt. While we were talking, my fellow commiserator accidentally dropped the cap to his water bottle. We both stood there and stared at it on the floor, wondering how we might pick it up (post-op bending was much frowned upon, assuming it was physically possible at all). He and I then looked at each other and burst into laughter – FINALLY someone understood how even the simplest tasks could be such impossible mountains!

A friendship never formed, sadly. The guy was nearly twice my age and I didn’t know how to have older friends back then. Instead, the cap stayed on the floor and we exchanged a knowing smile when one of us was called into the exam room.

Fast-forward to 2008. Rob and I had left California and were trying to figure out our new life in the trees and dampness of Woodhaven. Facebook was well on the scene and I had been part of its cyberfamily for about a year. I hadn’t had anymore back surgeries but it was clear the two I did have didn’t fix everything. Chronic pain, inability to work, and insomnia had taken up residence in our new home despite never having been invited.

One night, during one particularly long and frustrating cycle of no sleep, I meandered my way to a Facebook group for people who had had surgeries similar to mine. The group existed to chat and compare notes and commiserate. I immediately joined, thrilled to have finally found a tribe of “Me, too’s!”

There was obviously a pent-up demand because the group became quite large in just a matter of months. Then the people who started the group got all dramatic. Pain can do that. With the drama and the nearly 100 members, the group stopped being the haven of understanding that it had once been. Entertaining, yes. Helpful, not so much.

Another woman felt similarly and with a few emails and keystrokes, eight of us broke off and formed our own group. Yeah, maybe it was a little bit of “FINE! We’re just going to take our toys and go home!” but the eight of us had bonded and were growing weary of the silliness that the anonymity of social media can elicit in large groups.

So on July 4, 2010, we declared our independence and Got Your Back was formed. Secretly, privately, quietly. Don’t try bothering searching for it. If we’ve done our job right, you’ll never find it. Thank you for your barriers, Mark Zuckerberg!

Our tribal flag

A few more people were added over the next couple of years, bringing the total to 12. Well aware of how dramatically things changed with the large group before, we agreed as a group to cap it. No more members. People could leave but nobody else could join.

While again that might sound like playground neener neeners, it was really meant to protect the deep trust that was developing amongst this group of strangers with a common thread. We were starting to share some very personal thoughts and fears in those secret Facebook posts. Bringing in new people changed the dynamic and caused some of us to pull back a bit until we learned we could trust the newbie. While this happens in any group, it seems particularly tricky online. No voices, no tones, no body language. Just typed words and occasional photos to learn a person and her heart.

And so we have been 12 women sharing the experience of chronic back pain for almost five years. Yes, oddly without planning it, we are all women. The youngest is in her 20s, the oldest in her 60s. We are scattered all over the US and one is in Canada. Some are married, some have kids, some have grandkids. One has given birth during our time as a group and we all feel like honorary aunties to the adorable Ellie. Many of us have a deep faith in God, prompting me to wonder what the connection might be between a life of pain and a hope for and belief in something so much better down the road.

Over the five years, we have vented, whined, cried, celebrated, and rejoiced together. We have asked for advice and we have given advice. We have compared notes and we have compared MRIs. We have celebrated births and graduations and successful surgeries. We have bemoaned failed medications and insurance policies and scary trips to the ER. We have asked for prayers and we have prayed intensely. We have shared our lives. All at a distance.

So the trip to Hershey, Pennsylvania a few weeks ago wasn’t just to roll around in chocolate all weekend. Although that IS highly recommended and worth a return visit. The true purpose of the trip was to meet some of these dear friends in person for the first time. We had hoped to get as many of the 12 as possible to join in the gathering; unfortunately as life and pain would have it, just four of us were there. But wow, what a weekend.

I had already met one of the women (Joyce) in person several years ago when she had a family wedding to attend on the west coast. Since that first meeting, Joyce and I have become real friends, not just Facebook friends, despite the many miles between Washington and Virginia. So I knew that it was very possible that meeting Donna and Barb would be similarly easy and seamless and powerful.

But I have also watched enough episodes of “Catfish” to know that online personas and real life don’t always match. Not to mention, I am sure I am not the only person who has a blast chatting away on Facebook with someone only for it to feel all weird and awkward and almost forced when trying to continue the conversation face-to-face. Right? I’m not the only one?

So I was prepared for the awkward but hoping for the seamless when Rob and I first entered the Hershey Theater…our rendezvous with Donna and Barb.

Huge smiles, bigger hugs, and “YOU LOOK JUST LIKE YOUR PICTURES!” echoed off the marble in the theater’s lobby. Within moments, it was clear we were old friends, had been for years, and will be for years more. It was fantastic.

But not just that. The entire weekend was weirdly wonderful. We were four women and three husbands meeting for the first time but feeling like we had been sharing lives and stories for years. Some conversations started new, others picked up where they had left off on Facebook just days before.

It was also strange to be in a group with that empathy thing going on all over the place. We are all so used to wearing a mask and plugging along and dealing with the pain later. And so we did. Except that we all know what that looks like so we watched out for each other and cared for each other and changed plans for each other. We had each other’s back.

We agreed how refreshing and unfamiliar it was not to have to explain or make polite excuses for not doing an activity or wanting to sit in a particular chair. A simple “I’m done” or “I can’t” was all that was needed. Instead of explanations, there was understanding. Instead of disappointment, there was commiseration. Instead of distance, the bonds of friendship grew closer.

If you read my travelblog, you know we left very little chocolate unsampled in Hershey. The four of us agreed that we had a blast …and probably did a little too much. All of us were in deep recovery mode for days after, none regretting the bonus pain one bit.

We also agreed that this Got Your Back Get Together was the first but not the last. I already feel closer to Barb and Donna simply for having hugged them and heard their voices. I want to feel that same surge of bonding with Sharon and Lisa and Sara and the rest. So while the next gathering might be a little more low-keyed…I’m thinking a spa weekend sounds fun…I know for certain that it will be a gathering of old friends simply meeting for the first time.

Despite appearances, we did not coordinate our outfits.  Freaky, huh?

Pop goes the fragile

Over the years, I have noticed I have several "early warning systems" to tell me I am overdoing it and need to stoprightnow.

The first is achy pains that go down the backs of my legs. Not sciatica, just tender, crampy muscles. It sort of feels like working out at the gym too aggressively but is different enough that it's clearly not a "good hurt." This pain is what I felt as my first spinal fusion was starting to fail, so it definitely gets my attention even 14 years later.

Charging ahead at full speed for too long can also result in ridiculously frequent back spasms. Knots of jabby pain with bonus shocks of tingly nerves dancing all over my lower back. It is actually hot to the touch and I've often wondered if it is visible, sort of like a baby kicking inside the womb but totally not like that at all.

The dancing spasms is the pain that has literally brought me to my knees, made me burst into tears, and caused me to gasp and grab whatever is nearby for fear of losing my balance from the surprise of it all. Thankfully, it is typically pretty rare and doesn't terrify the crap out of me like it used to.

And then there is the emotional fragility. When I have been ignoring and stuffing my pain for too long, it starts to build up to an explosion of frustration and exhaustion. I've recently come to describe this condition as living with a "Jack-in-the-Box Brain." And by this I mean the toy, not the fast food joint with an advertising target I am quickly aging out of.

Somewhere along this pain path, I realized I have a very impressive ability to compartmentalize things...especially and most frequently back pain things. I can put my pain in a box in my brain with plans to deal with it later. Much like Dory in "Finding Nemo" my motto is often "just keep stuffing, just keep stuffing" while I go about the many fun and spirit-feeding things my life has to offer.

I realized the stark reality of this not long ago when a friend who also has many-years-of-back-pain commented that pain makes it so hard to enjoy even the simple things in life. While that seems like it should be Truth, the comment actually made me stop in my tracks because it makes no sense to me.

When I am fully engaged in a conversation, a dinner, a walk, weeding, exploring, adventuring, living...my pain goes right into my Jack-in-the-Box Brain. I thoroughly enjoy whatever I am doing and any little stabs or jabs or aches or cramps get flicked like gnats into the box to be dealt with later. I see them, I feel them, I know they are there...but I refuse to let them be anything more than a momentary annoyance so I can get back to the business of living life.

But the thing with a jack-in-the-box is that it is designed to build up pressure and then explode in happy, scary, clowny fun. And except for the whimsical hair, make-up, and wardrobe, that's where I find myself at the moment.

I am emotionally raw. I am exhausted. The pressure is almost at its max. I have been frantically stuffing for three months and it is about to explode all over my couch and bed and heating pad and Kleenex box. I know it is coming; perhaps I should just invite it out. Because I have people to see and places to go and much stuffing ahead that must be done. Maybe just one more crank of the handle so my Jack-in-the-Box Brain can release its contents to make room for more.

Canning my back out

After a few summers of living here, I came to understand that September hurts.

I won't go into a lot of detail since it is a Big Secret, but summer in the Pacific Northwest is sort of ok, I guess. We get some sunshine and warm weather here and there that are the payoff for the long months of rain and grey skies the rest of the year.

What this means in practice is that I do a lot of stuff during the summer that I shouldn't do. Stuff that helps me feel productive outside in the happy, glowy, sunshine because somehow hanging out in my zero-gravity fancy-pants recliner patio chair with a cold beverage and magazines seems somehow lazy. So there's some weeding and gardening and playing with water that I might do. I love every minute but I pay for it with back pain. Lots of it.

I try to take breaks and space out my outdoor activities and build in lots of walks. Nevertheless, the frequent limit-pushing accumulates and by the time September is here, I am in a mess of hurt.  At least I know it's coming, though, so I don't tail spin in panic like I used to. That's progress, right?

This year has been a little worse, unfortunately, because we have had the best growing season of the ten we've been here. Our garden is exploding with produce. Corn, onions, peppers, lettuce. Wild blackberries keep reappearing on bushes despite all of my picking. Today we actually gave away some tomatoes. In California, we pushed our tomatoes-aplenty on anyone who slowed down long enough to be accosted. At Woodhaven, I have hoarded each year's meager harvest with greed and absolutely no shame.

This garden bounty and my questionable need to feel "productive" have resulted in several rounds of this in the past couple of weeks, oddly coinciding with a back that is just a touch grumpy:

Corn is severely under-represented in this photo.  Oh so much corn in the freezer.
Let it also be noted that Rob has helped A TON in the making of this photo.
Oh, and a food processor. Why it took me 46 years to finally own one is the definition of a "brain fart."

The jars jars and more jars have also resulted in me starting to wonder if I need better pain meds and if my TENS unit is really working and thinking maybe winter isn't such a bad season after all. Mmmmm, fleece.

So yeah, I'm hurting. A lot. I've been trying to ignore it, like I do. As I said to a friend recently, denial is so handy! Until it's not.

I was hanging out in my doctor's office recently -- for a sinus thingy because I was still blissfully ignoring anything notable about my back -- and I spotted a cool little pain chart taped up on a cabinet.

Now, I've been around the block with pain charts. The 10 point pain scale is ubiquitous yet feels largely useless. It typically looks like this:

Don't those goofy faces make you feel better already? Except that last one; he really needs an ice cream cone with lots of sprinkles.

Years ago, after finally deciding my lumbar pain wasn't ever going to go away completely, I sort of recalibrated the Smiley Face Pain Scale. In my head, I typically live life around a 4 but try to make it look like a 2. I've been told I do a pretty damn good job of it, too. Yay me.

But entirely like that metaphorical frog placed in a pot of tepid water and slowly brought to a boil, I have gotten used to my 4 pain. Knowing this, when talking to doctors and other people with clipboards and prescription pads, I have sensed that were I not living in the pot of bubbling water all the time, I am probably hanging out more at a 6. That's been my gut feel with only a sad little face with droopy eyelids to back me up.

Until I saw this.

Click on the photo to see a larger version.

This is the pain chart I stared at while crinkling on the butcher paper in my doctor's office a few weeks ago. It is by far the best pain scale I have ever come across (well, except this one which is hysterical and worthy of a t-shirt). As I read each description, I almost cried with the joy of finally being understood. Even the use of "twinge" is perfect.

And so with this much improved pain scale, I confirmed my gut. Yep, I indeed live at 6 to 6.5. Right now, I'm approaching a 7.5. I have been at a 9 three times in my life. Very vivid, indelible, really sucky moments. Before I saw this scale, I had pegged them as 10s. I am very grateful now I've never gotten a perfect score.

None of this changes my pain level, of course. Only rest and sleep and heat and meds and acupuncture and kittens can do that. But the discovery of a well considered and useful pain scale does give my spirit some peace to know that my gut has been right. And that there is actually a pain scale out there that seems to have been constructed with the help of people in, you know, pain. Imagine that.

Signs that insomnia is winning

Sleep is a precious, precious thing.  I wish I had appreciated that when I was kid and hated naps.  Or when I was an over-worked college student and had a remarkable (and now longed-for) ability to take 15-minute power naps between classes and work.

The inability to sleep entered my life when my back pain did.  Indeed, chronic pain and insomnia are best buds.  I learned once that there are two main types of insomnia.  One is the type where you can go to sleep but not stay there.  The other is when you can't get to sleep in the first place.  The first type is almost always associated with chronic health issues. The second is more psychologically driven.  I felt some validation in identifying mine as the first type.

I have cycles of good sleep and cycles of bad.  My worst cycle ever lasted about four months. Four months without a solid night's sleep is a solid ingredient for self-diagnosed insanity. On the other hand, our office was extremely tidy and I had very impressive scores on Bejeweled.

Thankfully, these days the bad sleep cycles usually only last a week or two (God bless you, SleepNumber Bed).  And thankfully, my lifestyle is such that I don't have any major responsibilities, like kids or a job, or needs to operate forklifts or pilot airplanes.  So I can typically slog through a few nights with lousy sleep without too much disruption to those around me.  It's still annoying, though.

I'm in one of those bad cycles right now.  As the sun rises earlier and earlier here above the 45th parallel, the need to go to bed earlier is more pressing since there is really no sleeping past sunrise.  My earlier bed time is sort of working but not really.  And yes, I have blackout shades.  Eh.

As I dragged through my day yesterday, I started a list of signs that I'm currently losing the sleep battle. And by starting a list, I mean an actual list.  On a piece of paper.  Because one of the first signs of prolonged sleep deprivation is the utter loss of short term memory.  So here are my 10 Signs That Insomnia is Winning:

• Chewing gum makes you dizzy

• You pull up to a drive-thru mail box and have to get out of your car because you dropped an envelope while trying to stuff it in the admittedly enormous slot

• You have to check your rear-view mirror repeatedly because you can't remember what you saw the last time you looked back there...2 seconds ago

• Horribly complicated questions like "How are you today?" and "What do you want for dinner?" overwhelm you to the point of tears

• It takes far too much motor skills to put on earrings

• Writing emails takes forever because not only can't you type anymore, you are now questioning how exactly to spell words like "that"

• It takes four trips up and down the stairs in your house to locate the piece of paper you brought with you on the first trip

• You use a calculator to add two single-digit numbers.  Because, you know, 9s are hard.

• While draining pasta, you repeatedly remind yourself to save the pasta and ditch the water

• You are certain you had 10 signs of insomnia's victory but it turns out you really only had 9

Om not sure this is helping

Despite over 14 years of living with this back pain thing, I seem to still be looking for that magic solution that will take a good chunk of the pain away. I pat myself on my tender back for not thinking something on QVC will cure me entirely.

I've tried shoes (Sketcher Shape-Ups = BAD).
I've tried mattresses (Sleep Number = GOOD).
I've tried ointments (Icy Hot, Arnica, Salonpas, essential oils = EH).
I've tried pillows and cushions (vibratey thing at the Fair = BAD; expensive wedge for under my knees = GOOD).
I've tried therapies (acupuncture = GOOD; hypnosis = EH; massage = eye-crossingly BAD).
I've tried exercises (Tai Chi = BAD; elliptical machine = GOOD).

I have wondered if meditation might help; you know, something to help calm my head and be the antidote to the venom that often spews in there when I am in heightened pain. I have dutifully purchased books and DVDs and asked people for guidance and suggestions. But I just can't seem to get motivated to give meditation an honest go.

I know a lot of people meditate as a part of yoga. I tried yoga once, back in the '90s. It was one of those videotapes by Rodney Yee. He had credibility because he was on Oprah and I was on pain meds. It was a yoga practice specifically designed for people with back issues. At least that's how I interpreted the description. I tried it one day and put the tape in the Goodwill pile the next. I guess Rodney wanted to help strengthen healthy backs, not modify poses to help compromised ones. So I crossed yoga off the list forever more. Until January.

The class is called "Therapeutic Yoga for Neck/Shoulder/Back/Knee Issues" and is described as "...providing adaptations and modifications of the poses for those dealing with developmental, structural, and chronic/acute issues related to the spine and musculature. Designed for adults and seniors wanting to balance spinal alignment, reduce tension in the muscles, joints, and ligaments..."

It sounded perfect! Perhaps get some gentle stretching while learning how to quiet my head. It meets on Friday afternoons for 10 weeks. I have three classes left.

I am trying very hard not to judge all yoga classes and instructors by this experience, but I have to admit I am disappointed. I keep hoping the class will be more beneficial but each week I leave counting the number of sessions I have left.

My biggest disappointment is that although the class was described as being one for people with chronic pain issues, the instructor seems to be oblivious to this fact.

Much to everyone's surprise, this class includes a lot of lecturing. So we spend quite a bit of time sitting on thin mats on a wooden dance floor listening to the instructor describe movements, discuss yoga philosophy, and share spiritual insights. Several of us have rebelled and move to padded folding chairs when it seems like we will be listening for a spell.

After the first class, Barbara asked how we were all doing. One person noted he was pretty sore. Lots of heads nodded.

"Sore? Really? Who else is sore from last week?"

Every single hand went up. Naturally. This is a class of 15 people (now down to about 8) who have daily pain. We are sore, a lot. Try something new and we expect to be even more so. None of us were surprised we hurt. None except the instructor, who is trained to help pained people.

Last week Barbara was talking about the large therapy balls that are used in gym and physical therapy programs. I use one as a chair if I have to sit at a desk. Barbara asked if anyone had ever sat on one of the balls. Again every single hand went up. Because, well, we all have chronic pain and have been in physical therapy any number of times. Barbara was amazed. Huh?

A couple of weeks ago, one woman was having trouble bending at her hips, even while sitting. Barbara asked if the woman knew why she was having trouble.

"My gall bladder. I have gall bladder problems."

According to Barbara, the woman's troubles were much deeper than that. Barbara used this as a teaching moment to share with us how pain needs to be healed from within. It turns out the gall bladder does not contain bile. No. It contains repressed anger. And so the classmate, according to Barbara, needs to spend some time addressing her anger issues and then she will be able to bend at her hips.

The woman missed last week's class. She was in the hospital, presumably having her repressed anger removed.

I totally agree that there are psychological components to pain; indeed, that is why I want to learn how to meditate so that I can better calm and address those parts. However, Barbara's comments left the impression that essentially a lot of our pain is in our heads. A later discourse on lower back pain really being the fear of not being good enough was interesting but truly, I have x-rays and MRIs that would suggest other fundamental sources.

I am not discounting Barbara's premise of the mind-body connection. I am just questioning the way she presented it to a room filled with people with aches, pains, surgical scars, and titanium implants.

I had really hoped I would find peace and deep breathing and connection at this yoga class. I have not. I am grateful, though, that I have discovered that my body can do more than I thought it could. With gentleness and patience, it has worked with me instead of against me and has taught me it is stronger and more flexible than I realized. I am not sure if I am going to give yoga another try with a different instructor, or if twice is enough.

Any thoughts on alternative uses for a snazzy new yoga mat?

I'm pretty sure this is good enough.

Counting Spoons on a Whim

It was an innocent phone call. And a lovely invitation. But it left me sad, frustrated, and on the verge of tears when I hung up.

My friend simply called to invite me to "Movie Night" at her house tonight. A few women gathering to watch a movie of substance or optimism, or ideally both. I attended several weeks ago and enjoyed "The Best Exotic Marigold Hotel" even if it solidified my commitment never to travel to India.

But that night, as much as I enjoyed the movie and the socializing, my back screamed. I tried to get comfortable in the most back-friendly chair in the house. I even had my TENS unit pulsating, sending scrambling messages to my brain to confuse the pain language. But the fact remained that when I got home I was in significantly more pain than before I left.

And I was mad. Mad that I can't even enjoy an evening watching a movie with friends. Not without displacing all of them to folding chairs while I lounge on the sofa. Me, the youngest of the group by at least a decade.

So those maddeningly high-maintenance thoughts swirled when today's invitation came. And coupled with them was frustration with the spontaneity of the invitation. Now, I will be the first to admit that I do not like spontaneity. I like a plan. I like to know what is coming and what is expected of me. For the longest time, I assumed this was simply a part of my Type-A, control-freak personality and something that I needed to work on. But tonight I realized that my frustration goes beyond that.

I really did want to be able to say yes to the movie tonight. But the reality is, I need warning. Like by 10am, if not days earlier. Because I live my life counting spoons. I only have so many spoons (a metaphor for energy -- see The Spoon Theory) to dole out each day. I need to know what is coming so I can make sure I have enough spoons to see me through. And to be sure I have timed out pain medication to be maximized at just the right time. So calling me at 3:30pm for a 5:00pm activity, as romantically impulsive and exciting as I want it to be, is annoyingly unrealistic in my spoon-conscious world. Tonight I had just enough spoons left to watch Rob make me dinner, cry into a few tissues, and then collapse on the couch.

I so wish I could be spur-of-the-moment and shift gears at the ring of the phone. But that is not how my head or my body is wired. Instead of being grateful for the invitation, I was left feeling sad and weary of having to say no yet again to a loving, well-intention offer. And taking refuge on the couch, wishing for more spoons.

Llife Llessons from a Llama

An acquaintance of mine was in a really serious car accident back in October. She amazingly didn't bleed much but lots of bones were munched. I kept updated on her condition through mutual acquaintances, feeling a little awkward about contacting her directly to ask.

Around Thanksgiving I finally decided to visit her in the hospital, unannounced. That was a little weird for me; I rarely show up at anyone's door without warning. But I remembered how long and lonely days in the hospital can get and the uplifting impact of an unexpected but familiar face appearing from behind the privacy curtain. And that memory was from only one week in the hospital; I couldn't imagine being confined for two months.

Laurie and I had a great chat that day. I stayed way longer than I anticipated, our visit ending only because her mom showed up and I didn't want to intrude. I took Laurie a book, the first in a fictional series about San Francisco in the 1970s. It had provided a crazy, highly entertaining escape when I had to spend a lot of time in bed so I hoped it might do the same for her. The book and the visit resulted in a fun email correspondence that started to morph our acquaintanceship into a friendship.

I visited Laurie again about a month and a half later, this time in a rehab facility where she was very busy learning how to walk again. I knew right where to go since I had visited the facility several times in the past with Rojo the Therapy Llama.

I again stayed much longer than planned; the conversation was so fun and I was just dumbfounded to see Laurie doing so well. And I wasn't the only one -- doctors, nurses, friends, family, and Laurie herself have been awestruck by the speed of her recovery. As I've gotten to know Laurie better, I would say I have now witnessed the healing power of commitment, determination, introspection, communication, intercessory prayer, and optimism.

Last weekend when I was in a social situation with my friend Laurie, she shared with a small group an observation she had made during her nearly 4 months in care facilities. She said that nearly all of her friends and family who visited her were clearly uncomfortable in the setting. They were distracted and ooked out by all the medical equipment and "sick people" and all the contraptions necessary to deal with what are normally very private matters. Laurie said there had been just two people who visited her who were at ease and were present, who were not distracted by the environment and instead were able to comfortably connect with her as a person and not as a patient. Her words and her eyes thanked and humbled me. She said the other person was a friend who had gone through chemo several times and thus was excessively familiar with hospitals.

I pondered Laurie's observation for a bit. Although they were intense and vivid, I only spent about two weeks total in the hospital for my back surgeries. I understand the feeling of helplessness and loneliness and frustration and imprisonment...but on a two-week scale, not a four-month scale. Instead, I think what has helped me feel rather blasé about the hospital setting is Rojo.

Because of that extraordinary llama and his equally amazing buddies, I go into rehab and care and dementia and senior facilities on a regular basis. Looking back, I do remember being a bit taken aback at first by some of the things and situations I saw, but I was thankfully distracted by making sure a fuzzy llama didn't bump into an IV pole or step on a feed line for an oxygen tank. Now I don't think twice about going into those facilities. Instead of seeing the equipment, I enjoy looking at the family photos. Instead of scrunching up my nose at the odors, I watch expectantly for the smiles and gazes of wonder as people interact with the fluffy and non-judgmental animal.

At the end of all of this pondering, I am left with gratitude for Rojo and what he has taught me about seeing the person through the distractions of their environment. And I am left with a renewed commitment to myself to visit acquaintances and friends who are rehabilitating. And I am left with a need to encourage anyone -- who, for whatever reason, has a measure of ease in hospitals -- to realize they have something very important to share simply by showing up. A new friend might just be depending on it.

A human being, not a human doing

I am really not one for making New Year's Resolutions. I kind of figure, if it's that important, I should just do it now and not wait for an arbitrary date on the calendar. I have also seen people reach too high with their self-promises and crash and end up feeling worse for the experience, often consoling themselves by digging deeper into the bad habit they were trying to ditch in the first place. It's not that I am not goal-oriented. I definitely am and always have been. I have just shifted my thinking on the topic over the years.

I was recently emailing with a friend who is new to the pain world and is trying to figure out how one sanely lives in it. She asked me how I deal with the holidays since they can bring up a melancholy reflection on what used to be and what dreams were once achievable before Pain and Limitations took hold. I pondered this for a bit, the fact that I quite enjoy the holidays now but remember when they were rather tough with disappointment.

I replied to her that I have been at this so long, this IS my life so I don't really yearn for what it used to be anymore. And that only comes with time. But I do know that I made a huge leap forward in letting go of the past when I changed my focus on my goals for my life.

I used to be very career oriented and had a lot of goals about things I wanted to do. Somewhere along the line, though, I shifted from having goals about what I want to DO to having goals about what I want to BE.

My goals now, which are strived for daily, are to BE optimistic and authentic and straight-forward and compassionate and available. I can work on and achieve these goals whether I am walking 3 miles in a park, tackling a new volunteer job at my church, or hanging out in my (increasingly appreciated) recliner with an ice pack. By focusing on BEing, I am not sidelined and thrown into a funk nearly as often or as deep as when I was focusing on DOing.

I think if I focus on BEing something, the DOing will come naturally. If my goal is to BE self-disciplined, the exercise and moderate eating and smart choices about how to care for my back will all flow from that. Not that I've added being self-disciplined to my list. Although it visits regularly, self-discipline might someday be a permanent resident on my Be List. Some random day, having nothing to do with the calendar.

The Pain Game

When it comes to pain, Rob keeps telling me that my brain is very powerful. I will admit, that has always felt like a compliment. It is something that I was proud of...that I seem to have the ability to out-think my pain a lot of the time. Another word for it would be denial. Or compartmentalizing. Whatever you want to call it, the punch line is that my tolerance for pain is really a function of my head, not my nerve endings.

So that's how I typically live life. I put my back pain in a box over there and I try to ignore it. When it tries to get my attention, I get busier to distract myself. I know people quietly wonder why I do so much, why I am so busy given my chronic pain. And I imagine some people wonder how valid my chronic pain actually is given all my activity. But the truth is, much like eating spicy food, I know the real pain will hit as soon as I am still. So I keep moving, even if that moving ultimately leads to more pain. It's the "I'll Deal With It Later" approach.

It's all a mental game, really, living life happily despite daily aches and spasms. And I thought I had it figured out. I knew how to play the game and I think I played it pretty well. But then some new pain wanted in and I was totally thrown for a loop.

Over a year ago, my right foot started hurting. Not a lot but enough to notice. And enough for me to ask my doctor about it at a back-related check-up. He said I was probably walking funny and suggested drug store shoe inserts. So I did that, and bought new shoes, and bought new versions of old shoes, and tried acupuncture and cupping (imagine a vacuum cleaner hose slowly moved back and forth across your foot) and ice and heat and rest and pain meds and an ankle brace. Aspirin and cupping helped for awhile. Our couch and the brace made it worse. As did my apparently very powerful brain.

The pain got a lot worse a few months ago and lots of panic-inducing Internet searches ensued. My world narrowed to the size of my foot. I was completely consumed by the pain and the fear of what it might mean. The fear kicked off a terrifying downward spiral that left me convinced I would never be able to walk again without pain. This was especially heart-wrenching since walking is my therapy, both physically and mentally.

I was on the verge of tears most minutes. I had a hard time focusing on anything besides my increasingly intense foot pain. When I forced myself to do things to get myself out of my head, I felt very fragile. I had been in this state before but it was years ago when the recovery from my first back surgery was going too slowly and then suddenly took a nose dive. I lived in this state for several months and as a result, I was probably depressed for about 5 years. And because of my very powerful brain, that's where I was heading again.

A couple of weeks ago, I finally let a few friends in. I finally spoke about my new pain and my incapacitating fear of it. They rallied around me, gave me incredible, faithful support, and within days the dark hole I was in was suddenly flooded with light. I have been spiraling upward ever since. I have an appointment with a specialist in a couple of weeks and I finally know I will in fact survive until then. And I walked in a parade with llamas a couple of days ago, mostly ignoring my foot pain because it was in a box over there and I was busy.

Game on.

Much rest for the weary

It really wasn’t my idea, but I sort of had no choice. After crying in public…twice…I finally had to admit that my back hurt and I was sick and tired of it.

And so for 6 days now, I have been resting. Really resting. Not the “I’ll watch a movie and do laundry and oh, look, squirrel!!” type of resting I usually claim to do. More the “I am BORED out of my mind!” type of resting that I hate. I hate it because it’s boring and unproductive and it doesn’t feel like a lot of life is being lived while lounging about in assorted pajamas for nearly a week, being responsible for nothing, sipping tea, and staring at my slippers.  I imagine that sounds quite relaxing. And I’m sure it would be if I had chosen to do it. But doing something cuz you have to and not because you want to takes all the fun out of it.

So what does one do for 6 days while trying to calm down an angry back and a broken spirit? Here’s my list:

• Waste time on Facebook, including stalking a gaggle of girls from grade school that freakishly showed up outta nowhere thanks to photo tags

• Take a dozen or so surveys from a consumer panel. I have now registered my opinions on: consumer electronics, soft drinks, outdoor gear (I was quickly disqualified), using the internet for shopping, casino gambling, questionable ways to manage one’s financial life (payday loans), garden chemicals, auto insurance, steakhouses, cell phone companies, and toilet paper (“Just to check, do you yourself use toilet paper?”)

• Eat three bowls of popcorn, plus one burned bowl taken out to the garage so that area can stink, too

• Serve as cat furniture

• Do a self-manicure (I long ago noted an inverse relationship between how my back feels and how my nails look)

• Sew a button on your husband’s favorite yard/work shirt that has long outlasted the department store from which it was purchased at least a decade ago

• Write a letter to a college pen pal…a real letter, with a stamp and everything

• Update Windows, Adobe, and Java software on your laptop to make those annoying pop-up reminders go away.

• Summarize your 2011 Medical Expenses spreadsheet in preparation for tackling your taxes soon. Increase the fun by running some geek numbers to discover that although your annual insurance premiums went down 6% from last year, your prescription costs were up 37%. Thanks, I think, Obamacare?

• Watch movies and praise the invention of instant Netflix streaming to a laptop. Now Playing this week:
• You Again -- a high school angst/ugly duckling/romantic comedy with Sigourney Weaver and Jamie Lee Curtis both looking hot enough to give hope to any woman in her 40s that the best years can indeed include Spanx and Oil of Olay products. 3 stars

• Fired! -- a documentary about being fired; lots of funny stories from famous and not famous people, including a revealing commentary from a former Human Resource manager. 3 stars

• The Pixar Story -- a documentary about the animation company, highly populated with Hawaiian shirts and razor scooters. 4 stars

• Little Black Book -- a romantic comedy without a happy ending and Holly Hunter proving she can rock skinny jeans. 3 stars

• Toy Story 2 -- a classic I hadn’t seen in awhile; nevertheless, Stinky Pete is still kinda creepy. 3 stars

• Happy Accidents -- a peculiar love story between Marisa Tomei and a guy from the year 2470 who distracted me the entire 115 minutes by reminding me of an angst-filled high school boyfriend. And yes, I just stalked him on Facebook. Eh. 2 stars (for both the movie and the boyfriend)

• The Life of Reilly -- a documentary about the Match Game comedian from the ‘70s, Charles Nelson Reilly...during which he didn’t talk about the game show at all. And yes, he’s dead (that’s very funny if you watch the movie). 3.5 stars if Netflix allowed decimals.

My view for the past 6 days.  Not all that bad, really.

A Spectacular Day in Acceptanceland

Rob grew up within spittin’ distance of Disneyland (well, if Walt allowed such ungentlemanly behavior). One of our early dates was to Disneyland. In fact, it was at the park’s gate where I first met my future father-in-law. He took a picture of me and Rob, presumably to show the rest of the family what Rob’s new girlfriend looked like. I never have seen that picture. Given Dad’s photo sharing track record, there’s a really good chance nobody else in the family has either.

Given the park’s proximity, many family visits over the years have included days hanging out with Mickey and the Gang. The last time I went was in August 1998. My sister-in-law and I spent a fantastically fun day leisurely browsing in all the shops that ride-hungry husbands, brothers, and friends rarely had patience for. I’m not sure Beth and I went on any rides at all that day. Had I known that was going to be my very last chance to ever go on the Matterhorn or Space Mountain, I’m sure I would have foregone the yeehaw westerny shops in Frontierland for one last wiggly jiggly spin around the Alps. But I was steeped in denial about my occasional back pain and youthfully naïve that it might develop into something much bigger than I never imagined. So we shopped our little hearts out. I still have the red Mickey Mouse sunglasses I bought that day.

Fast-forward almost 14 years, 2 back surgeries, and a fused spine later and we come to Tuesday, January 31, 2012. The day I finally gathered the guts to find out if Disneyland is still the Happiest Place on Earth when you can’t go on most of the rides. The day I purposefully tested that I am finally mature enough to be able to enjoy watching other people do things I can’t. Yes, I do that to some extent every day, but roller coasters are different. I LOVE roller coasters. Or at least I used to. I have no idea now. But you know what? I’m ok with that. Blissfully, happily, gratefully OK with that! Yes, it’s official. I’m a Grown Up!!

It was a magical day. I bounced in my seat like a giddy 8-year-old as we entered the parking garage. I made Rob pose with me for at least 10 pictures before we even entered the gates. We arrived just as the park opened, by my request. As a kid, I LOVED being among the first to arrive, in time to see the sidewalks still wet from their final hose-down. I was happy to see a few stray puddles on Tuesday morning.

Our first stop was the Astro Blaster ride/game based on Buzz Lightyear from “Toy Story.” Very back-friendly, you sit in a space ship and aim a laser gun at different targets as you travel through the ride. Rob and I agreed we would not take advantage of the tantalizing but jarring “Spin” feature to better aim our rocket. It was a ton of fun and I thought I did pretty well considering I had never played the game before. Then I saw Rob’s score. Rob, who had also never been on the ride before, beat my score by nearly a factor of 10. I so did not get the Video Game Gene.

Dad and I then browsed in a store while Rob and Nancy went on Star Tours. I was proudly wearing my new personalized Mickey Ears when they emerged post-Tour. I wore the Ears all day, including at dinner at the House of Blues outside the park. I was the only person in the restaurant, children included, who was wearing Mickey Ears or any type of novelty Disney hat. Had I not been afraid of breaking the ears or bending the adorable wire tail, I would have slept in them. I LOVE my Mickey Ears!! Ok, so not entirely a Grown Up.

The rest of the day, we went on a few rides, happily walked past a lot more, shopped a little, and ate a lot. We marveled at how empty the park was. We walked right into the Haunted Mansion, and immediately boarded the boat for the Jungle Cruise. Our longest wait in Disneyland…aside from the train which we boarded as soon as it arrived…was for the Alice in Wonderland ride. We waited maybe 10 caterpillar’s worth before it was our turn to tumble down the rabbit hole.

Mid-afternoon, we went over to California Adventure. There were no signs of it in 1998. In fact, it was Disneyland’s parking lot back then. On Tuesday, a big chunk of the Adventure seemed to be under construction, but we were still able to enjoy a few rides and a delicious corn dog. (Thanks for the tip, Carolynn!!)

We went on the big Ferris wheel (wisely opting for a non-swinging car) and went Under the Sea with Ariel. We got our only Fast Pass of the day for the Soaring Over California ride. It’s basically an IMAX movie of California scenery viewed from a hanging seat a la hang glider. With my back limitations in mind, people have been describing this ride to me for over a decade. And it was exactly as promised. My only complaint was that I wanted it to last longer. Having lived in California for nearly 30 years, I had a lot of fun trying to identify the various places in the movie. There was one spot I couldn’t nail so I asked Rob. “That’s the desert,” he offered authoritatively. Yeah, thanks, Rob. He apparently didn’t know either.

Rob’s 20-year-old brother arrived in time to join Rob on what looked like a spectacular roller coaster called California Screamin’. Rob described it as “pretty good” which translated means, “WOW – that was a lot of fun and I’d go again but I feel bad you can’t go and I don’t want to make it sound like you missed anything.” I really wish he’d gone again.

Perhaps the most amusing ride, though, was the very first one. After watching the rocket ships in Tomorrowland zoom rather slowly in a circle and shift up and down purely at the whim of the front rider, I decided my back could easily handle the ride. Dad and Nancy agreed to go with us. They chose a rocket behind us so I couldn’t see what was going on with them, but from where Rob and I attempted to sit, it was a comedy of adult proportions.

Turns out those rockets weren’t really built for two adults. I got in first (probably a mistake) and tried to scrunch to the front as much as possible. Rob folded himself behind me, legs and arms hanging out, lots of banging against the metal, stares from the short line waiting their turn, much laughter all around. We finally got ourselves wedged in there, including just enough room for my purse, when the attendant came by and instructed us to fasten the seat belt. Seat belt? There was a seat belt? Yes, we were sitting on it and thus had to unwedge ourselves to find and fasten it. Truly, we were going nowhere with or without the belt. But rules are rules.

We hydraulicked around, me taking pictures, Rob going numb from the hips down. When the ride finally came to a stop, I ambled very ungracefully out of the ship, Rob awkwardly behind me. We found Nancy waiting for us outside the exit. Turns out she and Dad had a similar entry experience and gave up trying to fit both of them in the tiny rocket. Dad had orbited while Nancy watched from Earth. Ah, the advantage of being older and wiser.

I waited about a half-hour before I mentioned anything to Rob. You see, when I exited the rocket, I hopped and twisted and heard bones popping and was overcome by an adrenaline rush of fear that I had just wrenched my back or popped a disc or snapped a titanium rod. After concluding through the passage of time that I had in fact done none of those things, I mentioned to Rob that I was fine but had apparently popped some bones in my back on the rocket ships. He said, “Oh, that popping noise? No, that was my knee.” Yeah, waaaay too old to be trying that ride ever again.

With two hours to go before the parks closed, we said good-bye to Rob’s family and headed back into Disneyland for some final shopping. It was dark and the park was coming alive with LED toys and necklaces. Ropes were being set up for a parade. Sleeping Beauty’s Castle was aglow in pink lights. I immediately remembered how much I love amusement parks at night…when the strollers have left and the pace is slower and there’s a mystery in not being able to see everything in the darkness.

I asked Rob if he was willing to do one last ride, a ride I desperately wanted to do but had been thinking better of it all day due to a couple of short waterfalls. With some discussion and commiseration that doing it as the last ride was the smartest approach, we headed to the Pirates of the Caribbean.

Much like the entire day, we walked right on, no waiting. We had an entire row to ourselves and the boats ahead and behind were empty. Thanks to a good grip on the safety bar and some strong quadriceps, I lifted myself off the seat just enough going down the water falls to let my legs absorb the bumps instead of my back. And then I sat comfortably, snuggled against Rob, and breathed in the magic and humidity of the dark and dangerous piratey world. It was perfect. Well, aside from the distracting animatronics of Johnny Depp interspersed here and there. Yo ho, Jack Sparrow and brilliant Disney marketers.

We headed back to the main entrance to leave the park for dinner, paralleling a dancey parade. As we approached the last souvenir kiosk just below the train tracks, I slowed and grabbed Rob’s arm and pulled him closer. I silently reflected on all the times I had walked past that Last Chance souvenir stand: as a kid with her parents, clutching a new Minnie Mouse doll; as a college student with her roommates, finally not nauseous from the epic Tea Cup spinning; as a 22-year-old with the man she hoped to marry; as a 30-year-old having no clue she had just ridden her last roller coaster; and now as a 44-year-old who discovered that, like just about anything else in life, Disneyland is what you make of it. Wherever you are in life, whatever your limitations might be, Disneyland truly is the Happiest Place on Earth if you let it be.

A brief interruption to the fun

Denial is a powerful drug. It’s my favorite go-to medication in dealing with my back pain. Well, perhaps “dealing” isn’t the right word. The essence of denial calls into question whether anything is actually being effectively dealt with. Avoided? Pretended away? If I don’t acknowledge it it doesn’t exist?

But at some point, it stops working. The “la la la la…I can’t hear you!” becomes faint white noise to the aching that really wants some attention, dammit. And so here I am. Again.

I haven’t really acknowledged to myself yet that I am hurting quite a bit, but all the signs are there. The waking up at 3:00am, the quick brushing off of questions about how I am doing, the hot frustration of having to move around like a woman twice my age, the fear I might collapse into tears if I own up to it. And yes, in the quiet of a house asleep except for me and the newspaper delivery guy, the pain. It’s there and it seems it has something to say.

It’s old. Boring. Exhausting. Inescapable. And seemingly, eventually, undeniable. Dammit.

And Mom, it’s ok. I’ll be fine. Really. It’s just part of the road. But I guess maybe it’s time for a rest stop.

Save me a seat

I did a lot of sitting yesterday. Too much, actually. Sitting is the worst position for my back pain. And then when you add in poor seating decisions, well, my back feels like it is hooked up to one of those cardiac paddle thingys. Every few seconds, WHAM! My back muscles spasm and feel like they are leaping out of my body like that slimy creature in “Alien.” It’s tiring and has taunted me to the edge of my sanity all day. Even the typically reliable muscle relaxants are shrugging their cyclobenzaprine shoulders. I guess I just get to endure and wait it out. Terrific.

I had two long sitting occasions yesterday. The first was in a park at a cement picnic table for a book study. I should have brought a cushion and I should have known better. If I had just stopped there with the sitting, I bet I’d be praising my muscle relaxant prescription right now. Instead, yesterday I came home, reclined for about an hour, and ambled off to Occasion #2…a 19 year old’s birthday party.

The patio celebration was quite relaxing, with yummy food, pleasant chit chat, and a small gaggle of hugely fun teen girls who gamely referred to themselves (for the day) as the Birthday Girl’s Minions. Seating was provided and for the first time ever…since I do not camp nor have reason to wear the “Soccer Mom” moniker… I sat for a long spell in one of those fold-up-able canvas camping chairs. It was sort of like a hammock and I was surprised it did not hurt to sit in. Getting in and out of it required much focus and assistance, but staying put was much more comfortable than anticipated. Well, until late last night. Dreaming about being in pain is pretty much as annoying as being awake and in pain. On the bright side, at least I got to sleep.

What was so interesting to me, as I pondered this morning how I might have chosen better seating yesterday, was a phenomenon I have noticed at numerous outdoor gatherings: the youngest people snag the best seats. And by best I mean most sturdy, padded, stable, verging on “furniture,” and typically surrounding a table. Perhaps it is because the younger people get there first. Perhaps it is because they have no reason to realize that plastic, canvas, or webbed seating can be somewhat torturous when you reach or surpass the age at which you have been driving more of your life than you haven’t. Either way, I cannot blame them. Choosing those seats is a rational decision given the limited-by-life information they have. However, even more interesting a phenomenon: as the kids lounge about and twirl and bounce and otherwise enjoy the best seats, the adults accommodate them by creaking into lesser contraptions, never thinking to request a short game of musical chairs. Why is that?

Of course, I know without a doubt that one of the good chairs would have been happily relinquished to me had I asked yesterday. But, well, the butt hammock wasn’t so bad at the time and I really do get weary of having to make a fuss about my back. Being high maintenance sucks. No, I suppose the best option for the future is for me to simply invite myself to sit at the Kids Table. I might even get extra frosting that way, too.

I’m sorry you look fantastic?

I had the chance last week to visit a friend who is 3 months post-op on her third back surgery.  As she greeted us at the door, out of my mouth slipped words I immediately regretted.  Yep, I said with enthusiasm, “ WOW!  You look great!”  Oops.

Understand, my friend in no way indicated that I had misspoken.  In fact, she smiled and said thank you.  It is simply because I have been in her incredibly-pained-but-trying-to-ignore-it shoes…and she and I have even commiserated about such…that I knew I had made a mistake.  

But the truth was, aside from a small gadgety piece of electronica sticking out of her jeans’ pocket (it was a bone growth stimulator connected to two hidden patches on her back), there was absolutely nothing to indicate that my friend was anything but healthy, vibrant, and ready to take on the day.  She indeed looked great.  Great and on multiple pain meds, battling insomnia, unable to sit for more than about 20 minutes, and no doubt had to rev up to get herself showered and dressed and able to answer the door by lunch time.  But her cute outfit, light make-up, and warm smile hid all of this with expertise.

And this is the trouble with living with a chronically painful yet largely invisible condition.  You do your damndest to hide the pain and pretend you are normal and yet, when someone says you look great, you want to burst into tears.  In reality, you are holding on by a thread; you feel anything but great and now suddenly you feel like a lonely fraud with acting skills that are practically Oscar worthy.  You desperately want to hide how much pain you are in yet you are sad you've become so good at it.  Yes, it makes no sense.

And then there’s the flip-side. 

Also last week I got to have dinner with a friend who has known me since we were dissecting frogs in 7^th grade science.  We’ve kept in pretty good touch but we only get to see each other every few years or so.  A couple of days after our visit, we were chatting on the phone. 

“How was your pain while we were at dinner?” she asked. 

“You know what?  It wasn't bad!  I was doing a lot better than I anticipated I would be [we had had a long drive to get there].  Why?” 

“You just looked like you were in a lot of pain.”

Fabulous.  There I had been, feeling pretty good, happy, not thinking about pain, enjoying a treasured “good day” and…I looked like I hurt.

It’s just wacky.  It happens often, too.  I feel like crap and the world smiles at me and tells me I look fantastic.  I feel good and the world sympathizes with the pain I must be in.  All I can figure is that my mask is very sturdy…the mask that hides the pain and the running tally of how few spoons I have left for the day.  When I am determined to wear my mask, I apparently wear it fabulously.  When I don’t feel like I need to wear it quite so snugly, people get to see more of the real me and it must not look so good.

I don’t know what the answer is.  Wearing a mask takes a lot of energy.  But getting sympathetic hugs and pats on the hand when I am having a great day saps energy, too.  The thing I DO know, though, is that this is mine to figure out.  At one point earlier on this path, I got mad at the world for reacting to me exactly opposite of how I felt.  But that’s my deal, not the world’s.  I know that the compliments and concern…however timed…come from the same place:  love.  Which is exactly what I felt when greeting my post-op friend and sharing pot stickers with my pal from jr. high.  

Back Travels

With the various trips I have been blessed to take recently, a few people have asked me how I am able to do all that, what with a cranky back and all. It’s a good question because a lot of people with back problems aren’t able to travel very easily. So I thought it might be worthwhile to answer the question.

First, a quick recap. Back in the ‘90s I coughed and blew out some discs in my back. After a number of years of denial, I had two spinal fusion surgeries. My lower back is now a solid piece of bone, and I have some really spiffy titanium instead of a couple of discs. My daily pain is TONS better than it was prior to the surgeries so I consider my situation a success story. Sure, I am in some measure of pain most all of the time, but I have some awesome coping mechanisms that have given me a great quality of life despite it. I am one very grateful woman.

But with the pain and the lack of L4/L5 and L5/S1 and the intense desire to keep the discs I have left, I do travel a bit differently than I did in my pre-cough days. For instance:

I bring equipment. Specifically, I tote around a special lumbar pillow that I use on airplanes, airport shuttles, tour buses, any transportation that isn’t my own back friendly car with my very back-friendly driver of a husband. I also pack an egg-timer shaped pillow that I sleep with between my legs to help keep my spine better aligned when I am sleeping on my side. And I also bring along a piece of medical equipment I call my zapper.

My zapper is sort of like a TENS unit, for those who are familiar with durable medical equipment. It is not one, however, according to the insurance company who refused to pay for it. I’m almost no longer bitter. Anyway, my zapper is about the size of a box of Girl Scout cookies. Thin Mints, to be exact. I attach two long cords to it; at the end of the cords are little sticky patches. When I zap myself, I attach the patches to my back and lie down for 45 minutes while electrical currents flow through the patches in varying patterns to try to scramble pain signals to my brain. It doesn’t make the pain go away; it just makes me THINK the pain has gone away. Good enough! I am only allowed to use my zapper once in a 24 hour period, so when we travel I typically zap at night while blogging. I am grateful that so far, my electronic unit with wires and sticky patches hasn’t landed me in a small room at an airport being questioned under bright lights and armed guard.

And speaking of things that make me paranoid, I also travel with a small pharmacy in my purse with six different pain medications, plus over-flow bottles in my carry-on of my three favorites. My toiletries bag also has various sleep aids (pills, earplugs, sound machine) to try to overcome issues from difficult beds. I also go stocked with those ThermaCare heat wrap things. I won’t get on a plane without them. By the way, they aren’t kidding about not wearing them too long for fear of developing a heat rash.

For the getting to and fro parts of our trips, Rob does ALL the lifting. For my job, I used to travel by myself all the time. Post-cough, I really need a Sherpa. I can't get the suitcases into or out of a car, into or out of the parking/airport/hotel shuttle, onto or off of the scale at the airline ticket counter (and no matter how nicely I ask, the airline employees always seem annoyed to be asked to do it for me), off of the luggage carousal, onto a bed to unpack. I have tried twice to travel by myself since my surgeries. One was a disaster and the other had people stationed at either end of my flights to help me with my luggage. Yes, yes, I could always just have a pocket full of $1 bills and ask for help. But that would get exhausting, demoralizing, not to mention very expensive.

The first couple days of any trip are a bit rough due to the adventure of getting there, as well as adjusting to a new bed. To the extent I can, I try to plan minimally active days for the first day or two of a vacation. Similarly, I build in about a week of minimal activity when I get home so I can recover. We have been home from our Panama cruise for one week. I’m still not “there” yet in terms of being recovered but I am getting closer every day. Today, for example, I finally tried the treadmill at the gym. Progress!

While we are on the trip itself, I try to maximize walking and minimize sitting. But I really do best with a variety of activities and elevations as well as lots of flexibility to change my mind depending how my back is doing. On our Panama trip, I chose excursions very carefully (no ATVs, jet boats, scenic hikes, horseback riding, long bus tours, etc). I also made sure that I had an At Sea day after the more active excursions. This isn’t sure-fire, though. As it turns out, the snorkeling in Cabo San Lucas sort of killed my back. I’m thinking flippers were a really bad idea. So even though I had an At Sea day after snorkeling, I didn’t really start recovering from that until well after we got home. Don’t worry, though, I will NOT be using this as an excuse not to get in the water again. I just need to be better educated about flippering. Oh, and the day we spent going through the Panama Canal? It didn’t occur to me in the slightest that that would be a tough day. A more back-friendly plan would have been to stay in the restaurant on the 14th floor and alternate sitting and standing to watch the passage. However, it would have been very boring and a lot less informative and not nearly as sun shiny warm. If I were to do the canal passage again, I would wear shoes with better arch support and would remember to sit down more often.

I honestly was hoping my back would do a bit better on the Panama trip than it did. A similarly long cruise with my mom a few years ago left me with a back happier than it had been in years. I thought it was the cruising. Now I don’t know. On this trip I walked at least 2 miles every day, I climbed stairs all over the ship, I zapped almost every night, I took full advantage of my ever-available bed and lounge chairs by the pool, I planned ahead for sitting at shows, I took my back pillow with me into Costa Rica and Panama…and yet I was on the verge of tears during the “Relieving Back Pain” seminar on the last day of the cruise. And that was before they told me the price of the questionably good feet inserts. Maybe it was the flippering. Maybe we needed to get lost more (my mom and I got lost in several towns and that produced some gloriously long walks). Maybe all the leg shaving and sunscreen applications were too much bending. Or maybe…just maybe…I just need to move to Greece.

Never say never

Never in a million years did I ever think I would be a “cruise person.” For one thing, I am terribly afraid of water. I don't even like going in the deep end of swimming pools. And by “deep end” I mean anything over 5 feet. Plus, well, cruises seem so...so...old. Old people go on cruises. Or, people who like to get all gussied up and be social with strangers. Or people who like to have everything taken care of for them so they don't have to bother with the adventure of researching hotels and restaurants and “must dos” for a city. Since I wouldn't describe myself as any of those things, it is indeed quite a shock to my self-image to admit: I love to cruise.

I think it's the back-friendliness of it all. We only have to deal with lugging suitcases once; after they are unpacked, they disappear under the bed until the cruise is over. I also have a bed available to me at all times. Cranky back from sitting through a waste-of-time “Port and Shopping Show”? No problem! After a nice lap or seven around the Promenade Deck to loosen things up, I can retire to our room and lay down. With a self-imposed “There Shall Be No Elevator Use” rule, I get lots of quad-building stair-master exercise. And while I'm busy relaxing and wandering, my floating hotel is chugging along to bring me a new city with new sights and lots more opportunities to walk and make my back happy.

And so here I lay on our moderately comfortable bed in our stateroom on a long and narrow boat, watching Cuba drift by on the starboard side. It was about 2.5 years ago that Rob and I took our first (and we assumed only) cruise. About three days into that Alaskan adventure, we looked at our traveling companions and said, “This is a blast! Where do we want to go next?” Without much discussion, the four of us agreed that we would love to sail through the Panama Canal. And so that's where we...and perhaps the four other cruise ships we left Florida with yesterday...are heading. Several ports along the way, lots of “at sea” days which will either prove to be insanely relaxing or will prompt claustrophobia in the middle of oceany nowhere, and hopefully enough time to eventually be able to ditch the ship's map I am still carrying in my pocket. Stay tuned!

I'm guessing I'm the only one who was surprised

It seemed like a fine enough idea. I even mentioned it to a few people just to make sure I wasn’t delusional. “I will modify!” “I know my limits!” “It’s for beginners so it will be low-key!” And all of this was and still is true. And yet, after two classes of this fitness fad called Zumba, I am left on the couch smelling of Icy-Hot, having to admit that I’m just not ready to Zumba.

But it was so much FUN!! As I did little dance steps and swung my arms and drank a full bottle of water and felt my hair sweating, I felt alive!! The music was South American hip-shaking stuff that left me craving a margarita and chips and salsa. Ole! I was thrilled to find myself picking up the steps pretty quickly, a surprising by-product of my dedication to the step aerobics fad of the ‘90s. I was careful to modify, making sure not to hula hoop too broadly or jump or shimmy or cuchi cuchi. At the end of the class, I was sweating and breathing hard and smiling big. I realized it had been years since I had sweated that much from exercise. And it felt fantastic.

I paid close attention to my back (just ask me) over the next few days and returned to Zumba four days later, ready to modify a touch more just to be extra careful. It all fell apart when I got home.

My knee was screaming and almost collapsed under me as I walked into the house. It was the universe’s way of slapping me in the face. Although I had worn the wrong shoes (hence the knee), I could no longer hide from the fact that my back was hurting. And had been hurting since the first class. Not in a pin-pointed, pitch-forky, screaming way. More in an all-over, hit by an SUV way. And I had been convincing myself it was “a good hurt.” That it was the pain of muscles that hadn’t been used in a long time. And honestly, I still think that is the case. But I’m not sure those muscles need to be used that way. They are very busy protecting my fused spine. I really don’t need to swing my hips for good back care.

And so I lay in bed, on a heating pad, face scrunched up in waning defiance, tears of reality welling in my eyes. And I said out loud to Rob, “My back is hurting and I think it’s from Zumba.” I know, big DUH! But it was a big admission for me because I so, so, SO wanted to be able to take these classes. I had forgotten how much I loved the hugely fun combination of exercising and dancing and socializing. I was thrilled to find something mildly athletic that I was good at. I looked forward to laughing with a great bunch of women from my church and getting to know them even better. And the universe replied: “ That’s nice. Next?”

I have had a lot of practice over the years accepting, letting go, moving on from things I want to do but really can’t because of my back. It was really hard in the beginning because my life was filled with “can’ts.” These days, I know better what things to not even try. So I was a bit rusty on dealing with the frustration and anger and disappointment of being a two-year-old not getting her way.

Part of me is thinking I was a fool to even try Zumba, that I should have known better and that I could have avoided all this harrumphing if I had just been logical about it and stayed away. But, well, apparently this road of acceptance has a few bumps and detours. And the universe still has some lessons it wants to teach me. Like, for instance, Icy-Hot patches really don’t work.