vthiker09

[vthiker09]

Half Dome

I was sitting on a bed in a small city in Slovakia when one of my best friends asked me: “Erin! What happened to you 5 years ago?”  She was reading my Zodiac sign and saw something life changing had happened 5 years ago. I thought for a moment and replied: “I started to hike again.” Sports had been a staple in my life from day one. Being the daughter of a former professional hockey player and the youngest of five siblings who all excelled in sports, sports was the focus of my family’s life.  I was a three-season athlete all through high school and my first two years of college.   Trauma and my fowl ways of coping with said trauma, led me away from sports.  At the time, I didn’t realize how important they were to me.

After five or six years of poor behavior and diet, I found myself significantly overweight and unable to do the activities I didn’t yet realize I loved. I remember trying to hike a mountain and turning around because I was unable to complete it.  I said to myself “never again.”  The next summer, which was five years ago, I decided I was going to hike 30 mountains.  A “mountain” had to gain more than 1,000 feet of evaluation in order to count.   I don’t remember much from these 30 mountains other than a) I climbed them all in the time period I said I would and b) the final mountain I climbed was the one the summer before I was unable to climb. These 30 mountains sparked a change in me which continues to grow.  It shifted my focus away from drinking, partying, and poor eating habits and back to the outdoors and taking better care of myself.  My entire outlook on life and value system changed with those 30 mountains.

The next summer I decided I was going to hike Vermont.  Without actually reading what I declared I was going to do on social media, I unknowingly signed up to hike 60 mountains in one summer.  I carefully planned the hikes, making sure to budget time for the usual round of summer brew fests.  After 50 hikes, I tore my patella tendon at a friend’s wedding via some enthusiastic dance moves.  A three-week timeout on the couch and a planned vacation out west put an end to my goal.  Although I actually hiked well more than 70 mountains that summer, I didn’t hike the 60 in the book.

The next summer I just hiked.  At this point it was what I did.  It was no longer about specific mountains or how many mountains.  It was about going outside and being in the woods.  People often ask me why I love to hike so much. I simply say, “there is no other place where you can find true silence.”  It is a special moment when you are in the woods and all you can hear is wind in the trees and maybe a bird.  If you haven’t had this moment recently, I highly recommend giving it a try.   Later in the season, I remembered I still had 10 hikes to go to finish the book.  I busted out my Falcon guide to hiking Vermont and reminded myself of the 10 remaining hikes.  I started to complete them and with 2 left to go, I decided on a cool fall morning to hike Big Bolton.

Big Bolton wasn’t in the book.  It was a wooded summit and a harder hike.  The only appeal was I had never done it.  We all know at this point, Big Bolton was the mountain I hurt myself on. At the point I hurt myself I had two plans: 1. I was one week from travelling to the Smokies and 2. I had made plans to hike Half Dome in Yosemite.  I had started to read about Half Dome on a pile of outdoor blogs and websites I had become a regular reader of.  Something about Half Dome appealed to me.  I’m not really sure what it was.   There are plenty of mountains that are beyond challenging, with pretty views, and where people meet their demise.  At the same time, something about Half Dome felt special to me.

My injury put a hard stop to my hiking adventures.  What few people truly understood though was it put a hard stop on something that had become part of who I was.  It wasn’t just that I couldn’t participate in a hobby that I enjoyed; it was that a piece of my being had been taken away from me in a matter of one step.  There were many hours I spent trying to figure out how I would hike any mountain, let alone Half Dome.  Remember, my pining for Half Dome had begun before I got hurt.   After my first surgery, I lost hope. I went from my bed to the couch to bed to the couch for three months.   I was left with a shriveled leg and a massive amount of overall muscle loss and conditioning.  I’m pretty sure although I was significantly thinner, I was in worse shape than I was before I was hurt.

From the minute I was able to walk until my fourth surgery, something changed.  I wasn’t going to be the victim anymore, I was going to become the hiker I used to be and with any luck, I was going to become a better hiker. I was going to hike Half Dome. Half Dome became an obsession for me. Even when I was on crutches and it was challenging to get to bathroom, I would think: “I’m going to do an hour of floor exercises because this will help me on the side of Half Dome.”  This one mountain became my motivation to heal.

After my fourth surgery I got to a point where I could hike.  Although my toe was an absolute mess, I could ignore it and safely make it to the top of pretty much any mountain in Vermont.  With a pending toe fusion on the docket and a surgeon who promised I would be able to hike as much I wanted; I entered the lottery for half dome.   I wasn’t confident I would be able to complete the hike, but I did know if I actually got a permit, I was going to hike that mountain.

In January of 2019 I found out I had won two permits for late August.  I am not kidding when I say this: besides of my wedding day, I’m not sure I have ever been that excited.   Remember, this was the mountain I had idolized before I got hurt. It also had become the symbol of my healing journey.  Hiking Half Dome meant I was okay.   Two days later I had everything booked and was ready to go to California.  Now all I needed was a body and a joint which was ready to make the climb.  I should mention at this point: Half Dome is a 16 mile extremely hard day hike.   It climbs 5,000 vertical feet in 8 miles and is just stinking hard.  The crowning moment of Half Dome is the last 600 feet, which you climb via a set of steel cables.  We will revisit the cables later.  The point is Half Dome is stinking hard and a lot of people don’t make it to the top.

My journey to Half Dome was unique.  There was a significant emotional piece of this climb, but in very practical terms, not many people can say: “I just had 5 orthopedic surgeries over the last 2.5 years, spent 7 months not standing on my leg, 1.5 years in PT, and hell yeah I’m going to hike this!”   I’m not sure how to gauge that my healing goal was a mountain most able body people still couldn’t climb.  It just became my goal and there wasn’t anything that was going to stop me from standing on that summit.  

The following eight months was 100% Half Dome preparation.  My biggest challenge was taking 16 miles worth of steps.  Having spent significant time off of my leg, I saw steps in a very different way.  It wasn’t about how in shape or not I was, it was being able to step on my leg for that long and over terrain that hard.   I had spent so long with rules around how far or high or long I could walk, that my main barrier was getting used to walking longer distances again.  To do so, I instituted 10-mile Saturday.  Every Saturday from late March, until we got on a plane for California, Mike and I romped 10 miles.   Keep in mind these 10-mile hikes were paired with two or three other weekly hikes, running, biking, and strength work.  For that eight months, I was working out six days a week and was hiking at least three days a week.  I was beyond determined that if there was any reason, I wasn’t going to stand of the top of Half Dome, it wasn’t going to because I wasn’t able to step enough steps.

A week before we left for California, we did one final 10-mile Saturday.  We were romping around one of Vermont’s five four thousand foot mountains.  We also got caught in the rain.  I’m not sure I will ever be okay with wet rocks.  When an object takes several years of your life away from you, it takes some time to be okay with it.  Mike and I found ourselves in a sea of wet rocks.  I ended up falling on a wet rock and just bust out into tears.  I picked myself back up, scrambled to a tree and promptly stood hugging the tree in complete hysterics.  After a few minutes I pulled myself back together.  Mike asked me if I was okay, I grumbled “yes” and kept going.  After a few minutes I said “I don’t belong on Half Dome.” Half Dome is a giant granite dome i.e. a gigantic rock.  Although you aren’t allowed to climb it when it’s wet because you most likely will die via sliding off of it, the idea of scaling a giant rock seemed far out of my reach in that moment.

Despite my folly with a wet rock just a week before our departure, we jetted off to California. When we got there, it was all about Half Dome.  Our travel dates, how much we hiked, when we got up, when we went to sleep were all based on our Half Dome plans.  Two days before hiking it we scoped out the trail head and the parking situation. When I first looked at it, I didn’t feel intimidated.  I had put the work in to be successful and felt like I was ready.  It was another mountain and I hike mountains – it is who I am.

Our alarm was set for 3:00 AM on August 27th.  Thankfully this was 6:00 AM east coast time which made the early time frame a little easier. Just like with many things I am excited or anxious about, I awoke well before my alarm.  We hopped out of bed, grabbed our packs, and off we went.  We arrived at the trail head a little after 4:00 AM.  It was an exciting vibe as we put on our headlamps and got ready to go.  Everyone else in the parking lot was there for the same purpose – to be able to say they stood on top of Half Dome.

Half Dome doesn’t wait to show you why it’s considered a hard hike.  Right out of the gate you gain 2,000 feet of elevation over the first two miles.  The Mist Trail is responsible for this steep grade via a couple hundred granite stairs. It was pitch black, so although I could hear the waterfall that gives the trail its name and I got a little wet, I couldn’t see anything.  By sunrise we had made it to the top of Nevada Falls, which is the halfway point.  I felt good and the hike felt like basically every other hike I had done.  In some ways the trail was easier than the root and rock infested trails we call home in Vermont.  A well-maintained gravel path and some granite stairs was a welcome change.  

After Nevada Falls you get a short break via Nebraska Valley and your first actual view of the monolith you are about to climb.  This was the first moment I thought “wow, that’s really big.” Despite my brewing fear of the granite dome, we forged on.  The section between Nebraska Valley and Sub Dome is a couple mile long section of fairly steep switchbacks.  Switchbacks being a beautiful invention where you zig-zag up steep grades in an effort to make them less steep.  Although they can make you a little nauseous with the swift direction changes, they make the job a little easier.   After a while, we made it to the bottom of Sub Dome and the first real views of the valley. Stunning is an understatement.  I like National Parks because you can reach places where all you can see is nature.  This was one of those spots, except nature took the form of massive granite domes for as far as you can see.  It is a truly special place.

This was also the first place you got a good view of the cables.  Half Dome is really what Camels Hump in Vermont wants to be.  It’s a little rock dome next to a much bigger rock dome.  From the bottom of Sub Dome i.e. the smaller hump, you could see tiny humans scrambling up the cables.  Let’s talk about the cables: they are a set of two wire cables nailed into the rock via metal poles embedded a mere four inches into the rock.  The poles are accompanied by wooden planks placed in between the wires at 10-foot intervals.  The planks, poles, and wires are there because Half Dome climbs 400 vertical feet in 600 actual feet.  It’s a sheer rock face that climbs at a 45-degree angle.  You can’t just walk up Half Dome.  You basically have to drag yourself up via the cables because gravity is seriously working against you.

My “oh, crap” meter began to climb significantly as I watched people attempt the cables. Sometimes though you just have to ignore the tiny voice that’s telling you this is a bad idea and just keep walking. Especially when it’s the mountain you’ve been obsessing over for a couple years.  Sub Dome pales in compression to Half Dome, which is a little scary to say. Sub Dome climbs a serious amount of vertical in a short period of time via carefully etched steps in the rock.  Since Sub Dome is named such because it is a dome, your nicely crafted stairs are on the side of a cliff.  Although it would be challenging to fall because there are stairs and even though they are in a very different location than your run of the mill office stairs, it’s the same concept and most humans are pretty good at them.

Mike on the other hand is beyond scared of cliffs.  Sub Dome proved to be too much for him, and he stopped.  There was no stopping me though.  I was going to stand on Half Dome.  I had to stand on Half Dome.  After doing some serious huffing and questioning why I found activities like this “fun,” I got to the top of Sub Dome.  At this point I was less then a hundred feet from the cables.  My only thought was “how the fuck am I going to do this?”  I wasn’t alone as all the other groups were standing in awe of the rock face wondering similar things.  It’s an interesting place because you quickly find out who is afraid of heights and who is not.  There is a pile of people who call it a day the minute they see the cables, there’s another pile of people who stand there for 20 minutes being like “this is not my brightest idea, but I’m doing it anyway,” and then there are the people who just go. I’m not sure they are the brightest bunch as their self-preservation skills seem to be lacking and it’s probably the best way to get the job done.

I was firmly in “this seems like an awful idea and I’m doing it anyway.” I glued myself to a couple we had been hiking with for most of the day, borrowed a pair of rubber gloves from a guy who had borrowed them for someone else, and off I went.  The first half of the rock wasn’t awful.  It wasn’t fun and it was super hard, but it wasn’t awful. Basically, you would drag yourself 10-feet by 10-feet, resting in between planks.  I was very thankful at this point I had bought a pile of dumbbells and had been doing a bunch of arm work.  It felt more like doing leg assisted pullups than hiking.  Things started to get a little hairy halfway up. People come down the rock the same way you go up.  You have about five feet of space between the wires and people moving in different directions.  Outside of the wires is a 400-foot cliff on either side.  If you exit the wires you most likely aren’t going home.

A group of people started to come down and it was truly terrifying.  They had appropriate hiking boots and they were just sliding down the rock. Again – this is a 600-foot-high rock face with cliffs on either side.  It’s not something you want to slide down.  One woman was 100% having a panic attack right next to me.  Another woman helped her down and no one died that day, so it must have been successful.  Between watching people unintentionally slide down, the women at the bottom who said she had climbed it every season for almost a decade but not this year because the rock was too smooth, and panic attack woman - I was beyond scared.

Even though I had glued myself to other people, I felt alone in a place which felt unsafe.  At this moment I forgot about how much I had idolized this mountain and how much it meant to me and my recovery.  I was 100% focused on not falling off that rock. 2/3 of the way up there are cracks in the rock which made it impossible for the park’s department to lay a board at the standard 10-foot spacing.  Thus, this section is 20 feet between boards, uneven, and the steepest section.  Here’s a fun fact – I have zero degrees of dorsiflexion in my right ankle.  You know what requires a lot more than zero degrees of dorsiflexion?  Walking up a sheer rock face.  I started this section and realized I couldn’t bend my limb enough to push off of it.  This was when the “oh, fuck” meter was off the charts.  I tried to push off on my toes, which gives me much more range of motion and has been my saving grace on many rock faces in Vermont, except this rock was smooth.  Being on my toes didn’t put enough of my shoe surface on the rock and I just slid.  At this point I was in panic mode because I couldn’t physically walk up this rock.  I just kept thinking “don’t let go of the cables.”  In a true moment of self-preservation, I knelt and dragged and crawled to the next rock.  I had some truly gnarly gashes in my knee, but I made it to the next plank.

This was the point I realized my Half Dome aspirations were over.  It wasn’t safe or responsible for me to continue.  There wasn’t space at this point to be mad or sad about it because I needed to get down 2/3 of the rock face.  I sat on that plank for a solid 20 minutes panicking about how in the world I was going to get down.  My lifelong fear of heights paired with my not quite bionic ankle did not bode well for aiding me down the dome.  A less than helpful man came up the cables, asked me why I was sitting there, I told him I had no idea how I was going to get down, he said, “that’s rough,” and kept going.  

Shortly after a group of older women and person I didn’t know was guide came up the cables.  I had passed the group below Sub Dome and was really happy I did.  I asked the guide for help.  She said the first thing I needed to do was stand up.  This wasn’t going to happen.  Like so many mountains before, I was a billion percent sure my tried and true “no one dies on their butt” approach was going to get me down this rock. After some epic whining and sentiments around why standing up wasn’t going to happen, I slid in front of the plank. I now was sitting on the rock and the only thing between me and the most epic rock side of my life was a wire cable and a metal pole 10 feet in front of me.  The guide was borderline panicking at this point telling me I couldn’t slide down the rock and I needed to get back on the plank.

In my head I thought “I can slide to the pole and then from the pole to the next plank.  Just don’t let go of the wire.”  This is what I did.  I think I gave the guide a small heart attack and it was a really stupid idea. Many things could’ve gone wrong in that moment and I wouldn’t be sitting here writing this.   When I got to the plank 20 feet below me, the guide again urged me to stand up.  She promised my swanky hiking shoes would assist me down the rock and it would be okay. In a very trusting moment, I stoop up. She told me to turn around, so I was looking up the rock, and walk down the rock backwards.  I do so and realized this was a much better strategy.  I got to the next plank, realized I was going to be okay, thanked the guide and went on my merry way.  

I have never been so happy as when I got off those cables.  Maybe when I got married, but my wedding didn’t come with as much potential death options, so I’m not sure.  At this point all I wanted to do was get to Mike who was at the bottom of Sub Dome. I started to realize I didn’t make it to the top, but I didn’t really care.  In a true act of defeat, I made my way back down Sub Dome.  A few people asked me what the cables were like, I told them they were terrifying and apparently that was the general vibe that day. I found Mike sitting on a rock and I promptly burst into tears.  I explained how I didn’t make it and then babbled about how much work I had put in and I couldn’t make it the last 150 feet and how mad that made me.   Mike reassured me I had done more than enough, fed me some cheese and bread, and we started our way down.  The rest of the decent wasn’t as adrenaline producing, however, it was really pretty, and I would recommend it.  In total it took us just over 10 hours, which apparently is quite speedy.

That night and many nights following were full of me thinking about how stupid I had been on that rock and what could’ve gone wrong.  I am very thankful I met that guide.  I’m not sure what would’ve happened had I not.  I’ve had a few nightmares about sliding off the side and it really didn’t help that a woman did fall off a week after I was there.  Besides my somewhat traumatic cables experience, I had to sit with the fact the mountain which was supposed to signify I was healed didn’t happen.    I wish I had some profound thing to say about this and how I realized Half Dome didn’t matter that much in the grand scheme of my healing journey and the fact I’ve hiked over 300 miles and 100,000 vertical feet this calendar year is more than enough proof I’m okay.  I never got there.  I did get to a point where I could say the words “I didn’t make it” and it doesn’t bring tears to my eyes.  This feels like progress.

I find myself trying to identify new goals which will signify “healed” to me.  They are arbitrary hiking goals that I decide are hard enough to prove I’m okay.  I’m not sure why I still feel a need to prove to myself and others I’m healed, but I do.  My current healing journey goals include thru hiking the Long Trail and the NH 48.  Despite their jaded motivation, it’s still hiking and I’m going to have a great time scrambling up these peaks.  Perhaps at some point I’ll figure out what “healed” actually is in the context of my journey and I’ll write about it.   Until then, onward and upwards!

[vthiker09]

Getting Better

There was a time where I was convinced my recovery was like a switch.  At some point, I would be healed and I could move on with life like it was before.  The last several months have been a learning process around what “getting better” really means.  Unlike, my desire to be “healed,” getting better is much more complicated.  I find myself learning everyday both what I can and can’t do physically and how this experience has impacted me emotionally.

Progress is a relative term.  When it comes to injury recovery, progress takes a long time, it’s frustrating, and when you are an active person - getting back to where you were is an incredible amount of work.  When I actually think about how far I’ve come, it almost brings me to tears.  We all know people who have done a couch to 5K - the concept being you take someone who is inactive and get them to a point where they can jog/run 3.1 miles.  Take this concept and then apply it to my situation: I went from 7 months of NWB/PWB and a total of 18 months of majorly reduced activity and my “to” currently is a seven mile hike which climbs 3,200 ft.  When I joke about it, I will make comments like “I would like to thank a couple thousand squats and lunges for these accomplishments.”  In reality, I worked my tail off, because there wasn’t another option - I  was going to “hike” in my version of “hiking” and nothing was going to stop me.

Although part of me is proud of myself, because it would have been easy to give up at so many points along the way, I also get tired and defensive of my recovery status.  I wounder at what point I will be done with recovery and will move back into the world of general physical fitness improvement.  There isn’t a single active person who doesn’t have a goal around doing what they like to do more, faster, or their version of “better.” There’s a difference between this and the balance between improving and not doing too much.  “Too much” can set me back six months and I’m not going to waste time like that anymore.  I have too much to do.  

I find myself getting defensive in many situations.  I wish I could just wear a shirt that says: “I had 5 surgeries in 2 years and I’m happy I can walk!”  Although I don’t want to actually define myself by my injury, I feel like it would provide me with more space to move around the world without judgement.  As is it now, people see me as an able bodied human and I’m treated as such.  What this means is they will give me fitness advice, make comments about my performance, and what I should or should’t be doing based on the idea I am functional.

My reality is I am “functional.”  A PT would tell you the range of motion in my ankle, in certain directions, is unusable.  I spend an incredible amount of time trying to find shoes, insoles, braces, and taping  which will allow me to move the farthest, with the least amount of pain.  I have days where I say to myself “I need a bike day,” because my ankle is swollen enough where I know I need to give it a break.  My functionality is complicated and I don’t need people talking to me about it.  It makes me upset because they have no idea where I was, how hard I’ve worked, and how much further I’m determined to go.  They also don’t understand the special relationship I have with my limb.  Although I spend most of time hating it, I’ve also moved to a space of being appreciative of what I have, and having respect for my limits.  I also know it better than anyone else ever will.  We are frenemies in the truest sense of the term.

Taking all of this into account, yes, I get super snippy when someone tells me “hiking takes a lot of leg strength, maybe you should pick a smaller goal then the NH 48″ or when an older couple who is camped on the trail taking pictures of birds say “Wow! did you already get to top?  That was fast!”  I wish I could celebrate my accomplishments without having to think “yikes, this dude thinks I’m not in good enough shape to do the NH 48″ or “these people think I’m too fat to hike this mountain this fast.”  In reality, there should be a daily parade in my head celebrating the fact I can hike at all and I shouldn’t feel badly about it.  Sadly, I won’t be wearing my “leave me alone” surgery shirt anytime soon and I’m just going to have to deal with the haters.

At this point, I think I have the physical side under control.  My limb and I have an understanding where it allows me to usually do what I want to do and I give it a break every couple of days and perhaps a trip to the masseuse every couple of months.  My brain though is not quite in the same spot.  Every time I get to a trail head, I take a deep breath and pretty much hope I make it back to the car on my own.  I can put in ALL the effort to be a good prepared hiker and at the same time, there are a lot of slippery rocks out there.  I remember feeling free when the surgeon said “You can hike - there’s no point in waiting anymore.  You’re either going to be okay or you’re going to blow it out again.” There was a sense of comfort in acknowledging I was okay enough to be in the woods and a weird sense of freedom that my entire life didn’t need to be injury prevention anymore.  If I blew out my joint again, it wouldn’t be my fault, which was not the case for many months before that.

My newly found freedom, however, doesn’t stop me from worrying.  I continue to try to balance the fact my favorite thing to do, also ruined my life for two and half years.  It’s not an easy balance and sometimes I wonder if making it to a couple thousand more summits is really worth the amount of preparation and worry I go through every time I step on a trail.  I can only hope it gets better as I get more comfortable.

I don’t like talking to people I haven’t spoken to for more than six months.  I don’t like it, because without a doubt, within two minutes of talking, the conversation will turn towards my recovery.  I honestly don’t know how to talk about what happened.  It sucked and I’m really bitter.  I am better and I’m still healing in more ways then one.  Having said this, I don’t want to talk about it in a superficial setting.  Every time someone who never reached out to me while I was hurt, all of sudden says “wow! I saw on Facebook how much you’ve been through - how are you doing?” I just want to walk away.  It’s not even worth a snide response.  These people are not part of my support system and they don’t deserve any more than what I share on Facebook.

All these interactions do is bring up a whole pile of stuff I just don’t want to think about.  The PTSD experts refer to stuff like this as “triggers.”  Triggers are things which happen and remind someone of a traumatic event.  People respond to triggers in all sorts of ways.  My go to, when it comes to my injury, is to get super mad and defensive and then cry about it for a couple of hours.  It’s amazing how many different ways you can trigger memories of an injury.  Everything from seeing someone on crutches, to being in the same room as a doctor in a social setting, to talking to people who works for big-pharma or at a medical device company, to having a friend share their own poor medical experience, will send me into a little bit of a tailspin.  I realize it isn’t the world’s responsibility to manage my trauma and for the most part, I deal with it on my own.  I have enough tools from other not fun experiences in my life, where I feel okay about my ability to manage a literal landmine of injury triggers.  If I stop leaving the house, maybe I’ll worry about it. 

Although my Facebook will continue to be flooded with pretty pictures of mountains, there is more to it.  Every time someone asks me “so, you’re better right?”  I will say “yes”.  At the same time, I know “better” is complicated.  If hearing “yes, I’m better” makes the other person feel better and I don’t need to talk about it anymore, I’m going to call this a win.  Meanwhile, I’m going to keep exploring this new world of being better and although complicated, I will continue to celebrate every mile I can run, every mountain I can climb, every dinner I can go to, every cup I can carry on my own, and even every load of laundry I can do - it’s all fantastic and I feel very lucky. 

[vthiker09]

Managing My Medical Record

We all have our areas of expertise.  Areas of expertise can stem from life experience, decades spent within the same profession, or activities we engage in just because we enjoy doing them.  My areas of expertise, ironically enough, includes Electronic Health Records.  Six years ago, I accepted a position at a non-profit as their Software Administrator.  At the time, I felt my employer wasn’t transparent around what my responsibilities would be and was quite bitter about my newly accepted role.  Before this gig, I had worked within non-profits for many years, mainly in direct service or program management.  I, like most non-profit employees, hated data.  It was a time suck and took time, I didn’t have, from my main purpose - to actually help people.

Metaphorically kicking and screaming, I took on my new role and my strong “fix it” perfectionism, decided making this non-profit's data usable, was more important than my soap box rants around how it was a useless endeavor which only stressed, already stressed, service systems.  Over the next three years, I worked to make their data useful.  I facilitated trainings, wrote user manuals, created silly awards and games, audited more records then I would like to admit, and constantly nagged people - all in the attempt to prove data was important.  What I learned, in this period of time, was data is only something forced upon service providers, for no reason, if the agency or system used it in this way.  Data is only as helpful as the people who are collecting it, are dedicated, to making it useful.

After a few reports I ran secured funding for homelessness prevention and outcomes I generated, made a transitional housing program seriously look at it’s programming - I realized there was power in data.  It was the only tool this agency had to look at what was happening on a broader scale, from a service provision perspective, and see if what they were doing was actually helping people. 

I ended up leaving this agency to work for a software vendor.  For the last three years, I work every single day, helping non-profits begin to use an Electronic Health Record.  My scope of perspective has changed quite a bit since I worked at that small non-profit in a rural state.  I now work with state and local entities, across the country, with a 100% focus on their data.  The motivations for adopting an EHR vary - sometimes it’s to meet new funding regulations, or to be able to bill for services provided more accurately, or sometimes it’s rooted in being able to run more accurate reports on program outcomes.  There are some agencies who I work with who will say “I want my EHR to help me provide better services to my clients/patients.” 

These are my favorite agencies.  They are my favorite agencies because they see their EHR as a tool to help people.  They don’t see it as something thrust upon them by governing bodies or agency admins, who don’t really understand how difficult their day-to-day life is.  They not only see the value of well planned data collection on the individual level, they see value in shared data.  On both the state and federal level, across the country, there have been and are attempts at sharing data across vendors and providers, all aimed at a common theme - providing better services.

Although the nuances are complicated and the implementation can be easier said than done, the general concept is if different providers, working with the same patient, knows what the other provider is doing - they will be able to provide better care.  My instant thought is “No shit - Sherlock.”  It makes all kinds of sense if multiple providers are working with the same patient, they should share what they are doing.  The patient is an individual and all the pieces of their care equates to their overall health. 

The concept is simple and in practice, there is so much room for growth.  HIPAA regulations and confidentiality agreements, although very important, created an environment where providers felt they needed to keep everything under ten layers of red tape - even from other providers working with the same person.  I am not going to attempt to argue HIPAA is poor legislation, because it isn’t.  It provides very important layers of protection for patients.  At the same time, along with other regulations, it complicates coordinated care efforts.

Coordinated care has become a strong area of focus both on a federal level, within the medical and non-profit community, and for software vendors.  Since the actual coordination of information happens within a database, it’s of particular interest to have software which can help providers do this.  What I’ve found, the really hard way, is the software can provide the means and the provider can make it as hard as possible to create any level of care coordination and it hinders positive patient outcomes.

When I hurt myself, I was transported to Vermont’s largest hospital. UVM Medical Center is part of the UVM Health Network.  UVM Health Network is a collection of hospitals, specialists, and providers across the state.  They are all part of the same health network i.e. they all are owned by the same people.  It wasn’t always like this.  Many of these hospitals and practices used to be owned by other entities and were bought by UVM Health Network.  Thus, all these providers used different software vendors, or if they used the same vendor, they had their own implementation.  If you ask UVM Health Network, they will say they are working on a universal platform and it’s very expensive and complicated, which is why they haven’t done it.

I’m sure there is truth to this and it’s creating a care nightmare in Vermont and the burden is falling on patients to coordinate their own care for providers who should be able to do it themselves.  

Here’s my story: I was brought to the UVM Medical Center ER.  I was referred to a surgeon, via a paper referral, who worked at UVM Medical Center.  For a few months, my electronic health record didn’t really matter - because I only had one provider.  As a software consultant, I found it annoying my patient portal was basically a barren wasteland and all my follow-up was provided to me on paper.  At the same time, it didn’t really matter, because all I needed to do was show up to follow-up appointments and talk to the same person.  After I was referred to PT, I started to see a PT at Central Vermont Medical Center.  CVMC is part of the UVM Health Network, except they use a different software vendor.  The PT didn’t even tell me I could sign up for my second patient portal, so clearly they were not using it as a venue to coordinate my care, or at least not in a meaningful transparent way.  

Central Vermont Medical Center and UVM Medical Center do not share data.  Even though they are owned by the same people, they work in cylinders.  Thus, there was zero communication between my PT and my surgeon.  When things started to go downhill, it was my responsibility to say “my PT thinks I should get an MRI.”  We all know how much I believe my first surgeon valued anything I said, so you can surmise how much he valued what I communicated my other provider thought was going wrong.  After my first PT said “you aren’t getting better fast enough,” I went to a private PT practice in the Mad River Valley.  I’m not sure they even had a patient portal and they surely didn’t share information with UVM Medical Center.  Again, it became my responsibility to ask questions the PT had for the surgeon.  This time it came in the form of a crumbled piece of paper.  I brought said piece of paper to the surgeon and then did my best to relay the answers to my PT.

In a short period of time, I had an MRI done and was referred to another surgeon.  Since this was within the same hospital and the surgeons worked down the hall from one another, it was seamless.  After my third surgery, I decided to go to a PT in the same building as my surgeons.  I did this because I wanted the PT to be able to easily communicate with my surgeon and figured since they used the same software, were part of the same hospital, and literally worked 100 ft from one another - this should be pretty simple.  There were a few times I would say things like “Does Dr. so and so even read your notes,” and the PT would say “no” and then would offer to go talk to him - this never actually happened.  Thus, even though they were 100 ft apart, using the same software, they didn’t actually talk about my care - for the same issue.

Things became more complicated when I started to see a back specialist.  This person worked on the same floor as my ankle surgeon.  At this point, I had a PT, a surgeon, and a PA - who all worked about 100 feet from one another.  My PT would read the PA’s notes, and the ankle surgeon looked at my back MRI results when I was with him, so I suppose I should give them some credit for this.  At the same time, there was zero actual coordination of care.  The ankle guy said “you don’t want me to read your back MRI” and the back PA said “I’m not here to talk about your ankle.”  I remember literal fireballs coming out of my eyes when the back PA wouldn’t let me talk about my ankle, since the whole reason I was there was because the ball of my busted foot, wouldn’t stop burning. Although this may not seem related to the software they were using, it’s related because it speaks to the mindset which fuels hesitation to provide actual care coordination.  If medical providers treat people like body parts, instead of people, it makes sense why the won’t put a lot of effort into sharing information, about said body parts, in an effort to provide whole person care.

Shortly after this, I added an out-of-state private practice to my provider list.  This is when it really fell apart from my patient record perspective.  I was receiving significant care and all my medications were coming from this practice and this practice shared zero information with any of my Vermont providers.  At the same time, I actually got a Primary Care Provider, at a smaller practice in the town I live in.  This practice also had it’s own vendor and patient portal.  Thus, in a few months, I ended up with four patients portals and four providers who didn’t share any information.  These four being - UVM Medical Center, Central Vermont Medical Center, My Primary, and the Ankle Surgeon in NH.  I got a Primary because I was tired of the stink eye looks I would get when people would ask if I had one and I said “no.”  The rest of these providers only existed because of my mangled limb.

Adding the NH provider made my electronic health record almost impossible to manage - even for the software consultant.  There are many areas of frustration:

Medications: Every time I go to my Primary or Central VT Med Center, they ask me to update my med list.  Since most of the medications I am/was taking were narcotics, there is a level of mandatory information sharing.  I don’t know the rules and I am confident, in practice, they aren’t working.  My Vermont providers have zero idea about the medications my NH provider gave me - unless I told them, which I did.  When I would tell them I was taking something, they would add it to my meds list.  My providers were really great at adding medications.  They are awful at taking them off.  My meds list has become this really bitter area for me, because every appointment starts with the same conversation around meds, I haven’t been taking for months, which the provider has failed to actually discontinue.

At this point, if I was actually taking everything my VT providers think I’m taking, I’m pretty sure I wouldn’t be able to function and might have many more medical problems, then I do.  It’s infuriating to me, as someone who knows it’s doable, to be a patient who can with 100% certainty say: my medical providers can’t get my medications list correct and these are the people who are supposed to ensure the medications I’m given are safe.

Care Coordination: Every time I go to NH, they ask me who my Primary is.  Every time I tell them.  My Primary isn’t in their system, so it just ends up being blank.  Someone finally decided my Primary is someone in NH, with the same last name.  I don’t know who this person is and I’m not sure how much info has been sent to them about me.  My Primary has zero idea what is happening with the surgeon in NH.  A few months ago I rolled into my Primary’s office, in a medical shoe, for an unrelated routine reason, and my primary said “Oh my, you are really having a hard time.” She had no idea I had surgery, why, and didn’t even care to ask.  My NH surgeon is better than most in many ways.  When I started to go to PT, he said if the PT had any questions to reach out.  I provided the PT with his cell number and she never reached out.  She provided care to me with no actual information about what the surgeon did, other than what I told her.  Had my medical record been shared with UVM Medical Center - perhaps she would’ve just been given the necessary information.  I recently went to see an endocrinologist for a non-ankle related issue.  This was probably the worst example.  For some reason, she didn’t have access to any of my medical records, even though she works at UVM Medical Center and does office visits at Central VT Medical Center.  When I went to see her, it was like I had never seen a doctor, other than my disaster of a medications list, and two pieces of paper about a hip issue I had fifteen years ago.

Records Sharing: All of these providers have required access to my previous medical records.  Some of them required them before they would even book an appointment with me.  NH was one of these providers.  When I learned this, I promptly drove the hour to Burlington to get my medical records, in paper form, from the UVM Med Center Medical Records Department.  I then hopped over to Radiology to get my pile of imaging.  I then went to a UPS store and spent almost $100 to fax the paper and overnight the CD’s.  In 2018, I had to fax and snail mail my medical records, because I didn’t want to wait a month for them to be sent.  There is something fundamentally wrong with this statement.   When I started to see my primary, I had to send in a request to share my medical records from UVM - I can’t even request it online.  I have to print the piece of paper, snail mail it, and then wait a month.  I recently switched my primary to a primary who works for UVM.  I had to request my medical records be sent, in person, to a provider who works for the same hospital network.  I’m not sure if this has even happened.  I suppose I will find out at the end of April, when I go to see this provider for the first time.  When I first went to see the endocrinologist, they called me three times asking for my medical records.  I told them each time I had requested them to be sent and I didn’t know why they didn’t have them - they never ended up being sent.  If I am 100% honest - I am reluctant to seek care from a new provider because of this issue.  It’s a logistical nightmare and I’m tired of dealing with it.

Patient Portals: I have four of them.  This means I have four usernames and four passwords.  Thus, every time I want to look at test results, images, notes, or appointment info, I have to remember which provider did it and which patient portal it is.  When you’re rocking a couple hundred provider appointments, it can be difficult to remember who took the ankle x-ray in the fall of 2017.  In Vermont, patient participation in a patient portal is optional.  Thus, everything is still available on paper.  I can’t imagine how frustrating this must be for providers because everything is duplicated.

Communication: My plentiful number of patient portals, doesn’t make it any easier to talk to my providers, even though it could.  Each provider has different rules about how to contact them. Provider A likes texting, but only likes texts if it’s urgent.  Otherwise, call the office or just go there. Provider B only allows phone calls and you’ll always get voicemail, which goes to their nurse. They may or may not actually call you back.  You can email the nurse and it’s not clear on if they will actually answer you.   Provider C only has office assistants who will answer the phone.  You can’t get an actual answer unless you go there.  Provider D is pretty great at email and that’s it.  So not only do I need to remember which website they are using for their patient portal, I also have to remember how they like to communicate, so they’ll actually answer me and it changes based on what my need is.  All of these providers have messaging in their patient portal and that’s the last place I would go to communicate with them. 

I put my medical records in the same category as Aetna - they are there to make my medical life more complicated.  I like to ignore them as much as possible because they cause me a lot of stress and it’s not transparent to me how they are helpful to any of my providers, because at best, they are a fractured picture of what my care looks like.  The fix is specific to the system and as an Implementation Consultant, I’m sure I or someone like me, could be helpful to improving the current system.  At the same time, there’s no universal fix other than to mandate medical systems to improve, for the sake of their patients and themselves.  I’m a smart cookie and these are systems, which I’m familiar with, and it’s difficult.  I can only imagine what it’s like for someone who has more complex medical needs or isn’t able to engage with the red tape as easily.  It’s an unnecessary complication for people who are already struggling and it needs to change.  It needs to change because it complicates patient care - when if it was done correctly, it would actually help to improve the quality of care.

[vthiker09]

A Gimpy Kid’s Book Review

When you are forced to spend time on the couch and movement becomes something you only do when absolutely necessary, you find yourself with piles of free time.  At first, I filled said free time with horror movies.  Halloween being my favorite holiday, it only made sense to cheer myself up via my favorite movie genre.  Quite quickly, however, I realized my six to eight hour daily horror movie habit, was in fact, mind numbing and made me feel worse about my overall situation.  

I dabbled in a variety of arts and crafts, including: swear word coloring books, adult coloring books, paint-by-number, figurine painting, and knitting.  I also spent way too much time on Facebook and did my fair share of crossword puzzles and word searches.  It was probably the only time Mike would say “want to play a board game?” and my answer would always be “YES!” 

Despite my attempts to replace the outdoors with much more mundane activities, I was left with time to fill.  I remembered at some point, before graduate school, I liked to read.  Graduate school ruined reading for me via a unreasonable number of pages per week.  When I graduated, I was free from the massive pile of sometimes wildly boring reading assignments and I took said freedom, as a pass to basically never read a book again.

My long periods of forced couch time over the last two and half years, have reminded me, I do in fact like to read.  Perhaps a silver lining of an otherwise abysmal experience, I started to read again and kept doing it.  Below are the books I’ve read since I hurt myself and my general thoughts about each.  I hope you find something you would like to read!

What is it about: Roxane Gay was gang raped as a child.  To cope with the trauma, she gained weight.  To her, it was a way to protect herself, because society tells us heavy people aren’t desirable. She details her lifelong struggle with PTSD, obesity, relationships and how society sees and treats her as a obese, female, queer, person of color.

My thoughts: I LOVE THIS BOOK!  It’s an intense read and can be triggering.  At the same time, it’s such a well constructed, honest, and raw look at how we look at trauma and more so, how we treat obese people.  It connects her experience as a trauma survivor, with her experiences with racism, sexism, and sizeism in such a perfect and often times disturbing way.  I cannot recommend this book enough.  This was also the first book I read when I got hurt.  It holds a special place in my reading heart.

Gimpy Kid Five Star Rating: 5/5

What is it about: John Hodgman is a comedian.  The book is about how he grew up in a working household, who often struggled, and his transition from just making it, to having a vacation home in a wealthy town in Maine.  

What I thought about it: It’s a comical exploration into class in America.  He writes about the silly things he used to do as a youth and the equal number of silly class based practices, he sees as a wealthy person.  He takes a critical look at both the working class and the ultra-wealthy.  He also writes about “belonging” and what it’s like to transition from one class to another and to feel like you don’t fit-in.  

Gimpy Kid Five Star Rating: 4/5

What is it about: It challenges the concept that Millennials are a lazy, entitled group of brats and explains how they are, in fact, screwed in many ways.  It focuses on the economy and discusses everything from student loans, to the job market, to internships, to helicopter parenting, to benefits, to buying a house, to the environment. 

What I thought about it: As a Millennial, I thought “finally! someone who gets it!”  At the same time, I thought “This all sucks!”  It’s a good exploration into the financial and life ruin we setup young people for.  It blows apart the idea that if you “try,” you’ll end up with 2.5 kids, a white picket fence, and a house on a col-de-sac.  I found it to be both affirming and disheartening.  The end outlines a few action steps, but when you spend a couple hundred pages detailing how bad it is, 20 pages outlining how to make it better, doesn’t really do the trick.

Gimpy Kid Five Star Rating: 3.5/5

What is it about:  Michael Finkel is a journalist, who attempts to write about Christopher Knight.  Christopher lived in the woods in rural Maine for several decades - by choice.  It details both his relationship with Christopher and how Christopher survived living outside for so long.  It also explores why Christopher chose to become a hermit, in the first place, and his struggle to assimilate back into society.

What I thought about it: I LOVED THIS BOOK! and I found it to be really sad.  I appreciated the author didn’t straight out say Christopher was a mentally ill person, who fell under the radar for a couple of decades.  At the same time, it was hard to read about someone who purposely opted out of society and then was forced back into it.  It’s an interesting look into the idea there are people out there who don’t want a car, a house, or a job, and are actually happy living in the woods - and this is okay.  It’s a challenge to what we see as “normal,” honors Christopher’s life, and the complexity of his choices.

Gimpy Kid Five Star Rating: 5/5

What is it about: Rebecca Solnit is an activist and a writer.  This book is a collection of several essays she’s written.  “Men explain things to me,” is one of the essays in the book and explains the concept of mansplaning.  It starts with a story about how someone, who didn’t know who she was, tried to explain her own book to her at a party.  The other essays look at various areas of feminism, including the institution of marriage, sexual violence, war, racially fueled sexism, and how misogynistic norms are strongly embed into our society.

What I thought about it: She is a great writer and everything in this book is true and important. Everyone should understand these truths and should work to change them, as she outlines, so clearly, how destructive they are.  At the same time, nothing in this book was new to me.  I felt myself saying “YEAH!” but not learning anything new.  I’m not sure this is a reason to not read this book.  It’s a well written collection of feminist essays.

Gimpy Kid Five Star Rating: 4/5

What is it about: It’s a graphic novel about the author’s relationship with her father.  It starts with her as a young child and goes through his death. 

What I thought about it: The author is a Vermonter and I like to support people who live in Vermont.  As a queer identified, it focuses heavily on her experience as a queer youth, coming out, and her thoughts on her father’s sexuality.  She didn’t have a good relationship with her parents and I wouldn’t say it’s a happy book.  She also explores her challenges with mental illness, relationships, and becoming an author.  I don’t know if I would say I liked this book, mostly because I don’t think I like the author.  I find her to be arrogant and a little too neurotic for my taste.

Gimpy Kid Five Star Rating: 3/5

What is it about: It’s a graphic novel about the author’s relationship with her mother.  It’s a sequel to “Fun Home,” which I talk about above.

What I thought about it: It’s a less interesting version of “Fun Home.” I didn’t enjoy it.

Gimpy Kid 5 Star Rating: 2/5  

What is it about: It’s a fictional story about a women’s experience with deciding whether to have weight loss surgery or not.  It’s meant to be a commentary on sizeism, the diet industry, and how awfully we treat people who are overweight.

What I thought about it: I enjoyed it.  It’s a good look at how awful we are to overweight people and in how many different ways.  It’s critical of the weight loss industry, fad diets, and weight loss surgery. I found the end to be a little weird, but overall, I liked it.

Gimpy Kid 5 Star Rating: 3.5/5

What is it about: It’s a beginner’s guide to meditation, for people who don’t do yoga or drink soy matcha lates. 

What I thought about it: Well, I never started to mediate - so it was not life changing.  At the same time, it made mediation approachable and this is coming from someone who often times vehemently rejects things I believe are “hipster.”  It makes a good case for the health benefits associated with mediation, gives you a clear plan to start, and takes out much of the touchy-feely side of meditation.  Mike got this for me when I was not a happy camper, thinking it might help.  If you aren’t into yoga, essential oils, or have no idea what chakras are, this is a good book - if you want to start to meditate.

Gimpy Kid 5 Star Rating: 3.5/5

What is it about: It’s a collection of Oatmeal comics.

What I thought about it: If you like the Oatmeal, you’ll like the book.  It’s funny.

Gimpy Kid 5 Star Rating: 4/5

What is it about: Christian Picciolini was a high level skinhead.  The book details how he became a skinhead, what he did while he was a skinhead, and how he got out of that lifestyle. Since writing the book, he started a non-profit, which helps other people get out of this lifestyle.

What I thought about this book: I really liked it.  It, at points, is hard to read.  He is honest about what he did as a skinhead and all of it is horrible.  It’s quite violent at times.  At the same time, it’s an honest look about how these groups recruit new members, groom them, and eventually rope them in.  It relates skinhead groups closely to tactics used by gangs.  It’s also an honest look at someone who did awful things and managed to change.  Reading about someone who had such toxic views about race and truly reformed, is refreshing given our current political climate.  It’s an example of how people can change, no matter how “far gone,” they may appear to be.

Gimpy Kid 5 Star Rating: 5/5

What is it about: It’s a comic series named the Awkward Yeti.  The Yeti is the main character and all the other characters are the Yeti’s body parts.  It personifies their body parts and each comic explores something we can all relate to, when it comes to our body.  For example, the intestines are grumpy and talk about how tongue and brain make him do so much work.  His tag-line is “soon!”  Tongue is a villain who makes brain eat everything awful for the Yeti.  Eyes are bros who just like to lift weights all day.  Gallbladder does nothing other than make gallstones and says “I maked these.”

What I thought about the books: This is my favorite comic series.  I think I started to like it  more when I was struggling with my body.  I could imagine my little tendons dancing around and my stomach being like “NO MORE TYLENOL!”  I also relate strongly to heart, who is impulsive and motivated to do everything.  The relationship between heart and brain is interesting, because although heart is impulsive and often times doesn’t follow-through, heart motivates brain to relax and see the brighter side of life.  At the same time, brain keeps heart in line.

Gimpy Kid Five Star Rating: 5/5 - I even own a heart plushy!

What is it about: It’s an essay about how feminism is not a “woman’s cause” and how we should all care.  The title basically explains the book.

What I thought about the book: I 100% agree with everything in it.  It’s well written and I feel the same way about this book, as I did about “When Men Explain Things to Me” - I didn’t learn anything new.  At the same time, I feel like every white male should read it.

Gimpy Kid Five Star Rating: 4/5

What is it about: It’s a women’s empowerment piece written by a writer for Dad’s Magazine/Elle columnist and a writer who does a bunch of critical pieces about pop-culture.  The book basically dispels all the pressure women put on themselves, to fit a particular socially created mold, and encourages women to be more supportive - since we are all part of the same “coven.” 

What I thought about it: It’s a fun and superficial look at how destructive pop-culture is.  It’s an interesting read, especially if you love everything about Halloween and feminism.  There are reviews which are really bad, because it actually has little to do with witchcraft.  It uses the fundamentals of witchcraft to challenge pop-culture and encourage women to be themselves.  It’s not really trying to be a book about becoming a witch.

Gimpy Kid Five Star Review: 3.5/5

What is it about: It takes 10 minutes to read and it’s one of those life quote books.  It’s a book for adults.

What I thought about it: I LOVE THE COOKIE MONSTER! It’s written from their perspective and talks a bunch about how cookies make life better.  It’s just a fun read for Cookie Monster lovers.

Gimpy Kid Five Star Rating: 5/5 only if you love the Cookie Monster

What is it about: It’s about a black teen (Starr) who lives in the ghetto, sees her black best friend get shot by a white cop, dates a white boy, and goes to an expensive private school - where she is one of two black students.  It explores the challenges she faces as a black youth who goes between “ghetto life” and “rich white people life” and looks closely at the complexity of race relations in America, with a clear focus on racially driven police brutality. 

What I thought about it:  If you have ever uttered the words "all lives matter" or "blue lives matter," read this book. If you didn't vote in the last election or believe politics is something you can opt out of, read this book. If you've made a racist joke in the last 10 years, read this book. If you don't think racism or the impact of racially driven police brutality is real, read this book. Even if you are a politically active, socially responsible, white ally, you should still read this book. It should basically be required reading for every white person.

Gimpy Kid Five Star Rating: 5/5

What is it about: Holly Madison was a Playboy Bunny for a long time.  She lived in the Playboy Mansion with Hue Hefner.  The book is a tell-all about what it was like to be in the Mansion and live with and date Hue.

What I thought about it: I really liked this book.  Holly blows apart the concept of the “dumb blonde.”  She writes a detailed expose into how awful Hue Hefner was.  She clearly explains how he abused his “girlfriends.”  It’s a in-depth look into the complexity of domestic violence, tactics used by abusers, and is written by someone who supposedly “had it all.”  It also challenges more militant feminists to honor the experiences of people who engage in behaviors, which are seen as counter to the feminist agenda. 

Gimpy Kid 5 Star Rating: 4.5/5

What is it about: It’s a self-help book written by a blogger.  It focuses on concepts like: saying no, being okay with failing and learning from it, being okay with being wrong, the concept of choice, and how the perpetual race for “happiness” is crap.

What I thought about it: I bought it in an airport on my way to NYC, mainly because of the title.  I like the overall concept of letting things go and trying to stop living up to socially created ideals of happiness, which are all bullshit.  It’s definitely for those of us who are a little more bitter about life.  At the same time, it’s not a bitter book.  It takes bitter people concepts and uses them as a way to let people live life in a more free and less stressful way.  I wouldn’t say it’s life changing, but it’s interesting.  The guy is also a little bit of an asshole and as a fellow slight asshole, I can appreciate this.

Gimpy Kid 5 Star Rating: 3.5/5

What is it about:  Porchoista has lime disease. It’s details her horrific experiences with the American Healthcare system, when it came to getting a diagnosis and appropriate care.

What I thought about it: We all know, at this point, I think the American Healthcare system has epic room for improvement.  I found this book to be comforting, because basically all the ways I’ve written about how Healthcare is America is awful, she also experienced.  I also found it to be terrifying, because a small part of me hoped what I experienced is not the norm.  If some day I write a book, it’ll be like this book.  It made me feel mad and sad on Porochista’s behalf, she had to struggle for so long, just to get better.  It’s a comprehensive look at dismissive doctors, the horrendous state of women’s healthcare, and pill happy doctors - and the wreckage this can create.  It should be required reading for all healthcare workers.

Gimpy Kid 5 Star Review: 5/5

What is it about: Samantha Irby is a comedian/blogger/writer.  It’s a collection of essays about her take on life, which are really funny.  It’s an honest look at her experience living with IBS, dating, and being an obese black person in NYC.

What I think about it: You know those things we want to say about life and never say?  Well she says them - all of them.  It’s a hilarious and raw look at some of life’s most embarrassing life moments.  I found myself saying “YES!” while laughing and being a little terrified.  It’s a book any, slightly bitter, young woman can relate to.

Gimpy Kid 5 Star Rating: 4/5

What is it about: It’s memoir about her life before the Mindy Project.

What I thought about it: It’s well written and I like her.  If you like her as a comedian, you’ll like the book.  It mainly looks at how she became a writer and her time at The Office.  It’s not fantastic, but again, if you like her, you’ll like the book.

Gimpy Kid 5 Star Rating: 3/5

What is it about: It’s a collection of short descriptions of monsters across the world.  They are mainly folklore or the monsters your parents tell you about to keep you doing bad things.

What I thought about it: It took 10 minutes to read and I like Halloween.  Mike got it for me when I was having a bad day.  It did it’s job i.e. it cheered me up.  The illustrations are really well done and there are a couple of interesting monsters.  Enera is my favorite.

Gimpy Kid 5 Star Rating: 3/5

What is it about: It looks at the Hillbilly culture in Northern Kentucky and the author’s experience growing up in a poverty stricken part of Ohio.

What I thought about it: I hate this book.  The author becomes a lawyer and graduates from Yale.  He uses this as a platform to say “Look at me! I grew up in crappy conditions and still made something of myself.”  He blames people for perpetuating systemic poverty and basically confirms everything conservatives say about “welfare queens.”  Although J.D. had a really tough childhood and no child should have to experience what he did and I’m really glad it all worked out for him - I think his book lacks insight regarding the complexity of systemic poverty and I wish he didn’t write it.  I mainly kept reading hoping I was missing something and it would get better - it never did.

Gimpy Kid 5 Star Rating: 0/5

[vthiker09]

Feelings

I have many fuzzy feelings towards NH surgeon guy.  Mostly rooted in an appreciation for him being able to exhibit basic empathy and having the skill set to help me, I try quite hard to keep him out of the rest of my feelings.  I had a routine check-in with surgeon guy last week and I asked: “do I have do that running progression thing?”  Although a little preemptive, because I can’t run for another five weeks, I wanted to know where I stood.  Surgeon guy seemed to be a little taken back by my phrasing and said: “Why do you call it that thing?  Even if you weren’t hurt, it would be a good idea after not running for several months.” I mumbled something about being frustrated, said I understood, and moved on to my next question.  This is what I wanted to say: “I’m having a hard time dealing with the amount of loss I’ve experienced. Two months ago, I was running 3-4 miles three or four times a week.  This was after I wasn’t able to run for a year and a half. The idea of taking, what I perceive as several steps backwards, and then having to walk 4 min run 1 min for 30 min, wait 48 hours, and then increase the run piece by 1 min until I can run for 30 mins - makes me really sad.  I just did this.” 

Although NH surgeon guy is much better than most, I’m aware I don’t really have time to delve into my emotions, if I want all my medical questions answered and Surgeon guy isn’t really the right person to talk to.   As a community, we decided a long time ago, to compartmentalize medical care into “specialties.”  The general idea being some areas of medicine require a more in-depth knowledge than others and in order to give people adequate care, some doctors need to spend their entire career working on one area - because the human body is complicated.  Mental health was identified as a specialty area and was carved out long ago.  At the same time, mental health carries a host of societal stigmas with it.  It was carved out under the general guise of “specialties,” but at the same, it gave “traditional medicine” a way to say “nope, not us - go to talk to your therapist.”

In addition to what seems like a general fear of phrases like “I feel,” my experience has been the medical community sways in the opposite direction.  I suppose after you see a couple hundred or thousand broken bones, blown apart joints, blood, and whatever else - a person’s natural progression would be become to less empathetic. When someone’s worst day is your norm - it might be a little harder to understand why they are whimpering in your office.  There seems to be more space, however, for medical professions to be insensitive, rude, and hurtful.  It’s as if their vicarious trauma provides them with the green light to make my trauma worse.  

In my experience, the worst offenders are nurses and anesthesiologists.  I have endless examples, but let’s just stick with my most recent surgical experience:

1. Nurse after seeing how much I weigh: “So are you kind of a healthy person?”

2. Nurse when Mike takes my purse as I’m being taken into the OR: “Nice Kate Spade (laughs)” me: “Thanks!” Nurse: “Oh, it’s yours?”

3. Anesthesiologist within 30 seconds of meeting me: “Oh, looks like you’ve been a good customer” - as she reviews my surgical history.

4. Anesthesiologist: “Is your heart rate normally in the 40′s?” - with a panicked tone me: “yes” nurse: “do you run?” me: “yes”  anesthesiologist: “Oh, that must be difficult with your foot.” 

Now keep in mind, I interacted with the nurses and the anesthesiologist for maybe a total of 20 minutes.  That’s a lot of less than trauma-informed language to use in 20 minutes.  

Surgeons tend to share their lack of empathy by just not listening, belittling you, or dropping anxiety causing statements about the extent of your injury.  My personal favorites have been:

1. Me: “If everything is okay, why is my ankle so swollen, why does it give out all the time, and why does it hurt so much?” surgeon: “Well, we could re-break your leg, take the screws out, rearrange your bones again, and see if that works (laughs).” 

2. Surgeon describing my initial injury: “It was kind of like your foot was torn off your leg.” 

3. Surgeon describing the extent of damage to my foot: “It was kind of like you were walking around with an amputated toe.”

4. Me: “The inside of my ankle really hurts and I keep rolling it.”  Surgeon: “I know your MRI says your deltoid is damaged, but it’s not - you’re fine.”  me: “Then why does it keep giving out?”  Surgeon: “I don’t know.” 

5. Me: “I can barely walk 3 miles and I can’t hike at all.” Surgeon: “That’s pretty good!  I haven’t walked 3 miles in years.” 

Egos, paired with burnout, paired with vicarious trauma, paired with a general sentiment mental health and physical health have no space in the same building, has made dealing with the words coming out of my medical professionals faces, as difficult as my actual medical problems.  For anyone who knows me well, I am not quiet.  Thus, many times, I just had to bite my tongue when medical professionals would say something which was hurtful.  I did this, because I knew it was in my best interest to keep them happy.  If they didn’t like me or I was deemed to be a “trouble patient,” it wasn’t going to help my overall cause - which is to move again without pain.

What happens when your mental health is effected by your physical health? All the bad emotions I currently struggle with didn’t exist before my injury - they were caused by it.  Thus, why is it not somewhat the responsibility of my medical providers to acknowledge I’ve been through an awful ordeal and to just be decent to me? 

In theory, they would every so often ask if I was okay, but I know this would be asking too much.  If they ever did, this is what I’d tell them: 

I feel angry: I’m mad about the medical care I’ve received.  I feel like my care was delayed, diagnoses were missed, I was belittled, not listened to, two of my five surgeries were pointless - and I’ve lost 2.5 years of my life because of it.  I have a had time sitting with this and knowing the people involved will never acknowledge their role or be held accountable in any way.  In the meantime, I will never get those 2.5 years back.

I feel hurt: I’m hurt in the feelings sense of hurt.  There are people around me who have let me down.  I’ve lost friends and there are others who I don’t feel the same way about.  I saw pieces of people I didn’t want to see.

I feel sad: I spent a year and half not being able to do the things which help me relieve stress and help me maintain my mental health.  In an extremely stressful time, I didn’t have the normal activities I look to, to help manage stress.  I got them back for a few months and then had to give them up again.  I feel a great sense of loss and it makes me sad.

I feel worried: I’m worried this won’t work.  Why should it?  the other four times didn’t.  I’m worried I will never be the same.  I’m worried I will live with chronic pain.  I’m worried when you say “you have an ankle like no one else,” it means I will never be “done” with this process, because I will always struggle in some capacity.  I’m worried it’s only a matter of time before I blow out my joint again.  I’m worried I have fewer years to hike because my injury will, at some point, completely take hiking away from me.  I’m worried “normal days” are something I may not experience for a long time.  I’m worried I am going to be alone while I try to figure out how to live with this.  I’m worried I’ll struggle because I’m too stubborn to tell the difference between healing and a problem.  I’m worried about what life will be like 10 years from now and if I’ll be able to deal with it.

I feel alone: I don’t know anyone who has hurt themselves to the extent I did.  I know a pile of people with bunions, arthritis, broken ankles, broken legs, tendinitis, or other foot and ankle afflictions.  I don’t know anyone who has dealt with something like me and it’s difficult.  Sometimes I want someone to talk to - who really “understands.”  The closest person I’ve found are the surgeons and they don’t have time to talk to me.  

I feel tired: I don’t want to do this anymore.  I don’t want to drive three hours to take an x-ray.  I don’t want to go to PT.  I don’t want to have a surgeon.  I don’t want to have rules about how I have to move through the world.  I don’t want to argue with Aetna.  I don’t want to rely on Tylenol and Aleve to make it through the day.  I don’t want to have to deal with the lack of compassion within the medical profession.  I don’t want to have to leave dinner because I can’t sit in a chair any longer.  I don’t want my entire life to be based on my leg and say things like “I don’t know if I can do x, we’ll see how I feel.”  I want to go back to being “Erin” and see my primary once a year - maybe.   

I feel lost:  I know I will have to manage my healing for quite awhile.  I don’t really know how to do this.  I don’t know how to manage a serious injury.  I feel like everyday is something new and not in a fun way.  I feel like I don’t have the skills to properly assess what is and isn’t okay.  I wish I didn’t have to learn these skills.

I feel overwhelmed: I walk through everyday holding all of this and it’s exhausting.  I feel like I’ve become selfish out of necessity.  I have become someone who takes and takes emotionally from those around me and I don’t like it.  I want to be there for my friends and family like I used to be.  I don’t want to say “I’m sorry, but I can’t listen to this right now.”  I don’t want to worry someone will tell me they are having a bad day because it’s going to send me over the edge - since I’ve had 700 or so “bad days” in a row.  I want my emotional pot to empty out a little so I have some space for other people.

I feel bitter: I feel bitter both about the medical care I received and the whole process.  I complied with every single direction I was given.  I worked really hard to get better and it failed.  It failed four times.  Other people do everything wrong and they end up okay.  This seems unfair to me.  Why did it fail four times? and why can’t anyone give me this answer?

This is how I feel.  This is what I walk in with every single time I go to see a surgeon, PT, nurse, or office staff.  This is also how I feel as I manage my non-medical life.  It’s what I walk around with every minute of everyday.  

Given all of this I wish a few things were true:

1. I wish there were mentors within the medical community.  I would have loved to talk to someone who had had a similar injury and was a few years out.  I wanted someone to talk to, who has experienced what I have and has been trained to help others.  I don’t want someone who gives me faulty medical advice based on their own experiences.  I want someone who “gets it” and has the skills to listen.

2. I wish the medical community had more skills around managing the mental impact of injuries or illnesses. I wish there was a higher standard when it came to how patients are treated verbally and offenders were held accountable.  I wish the people who knew my medical situation the best could’ve also been the people who said “we know this is hard.”  

3. I wish doctors were given the time and space to care for people instead of treating individual body parts.  This piece alone would’ve made a huge difference.

[vthiker09]

Pain

Pain is widely complicated. Pain is widely complicated because it combines a neurological trigger to stimulus and a conditioned phyiscal response, which is formed by varied ideas about what “pain” is and how to handle it.  These ideas about how to respond to pain are impacted by a whole host of social and societal norms.  Thus, we have a complicated physiological response to perceived danger within our physical selves, complicated even more by what people think about pain based on everything from your gender, race, upbringing, and how fit you are.

My biggest area of self-growth, since my injury, has been how I perceive and respond to pain.  Here’s where I started:  When you grow up in a house with a parent who was a professional hockey player, you are taught very strong ideas about pain and what to do about it.  I am the youngest of five and all of us are very active people.  My brothers and sister all raced road bikes, ran, and cross-country skied.  All of them have run marathons and a few of them have competed on the international scene. Personally, I was a three-season athlete, until my sophomore year of college, have run a marathon and three half marathons, and all I want to do most days is hike.   I wasn’t as motivated by competition as my siblings were; however, I find much joy in experiences and the more intense the experience is - the better.  Thus, things like hiking a book containing 60 different hikes across Vermont in six months fits my idea of “fun.”

Anyone who has run a marathon will tell you pain is just part of the deal.  It’s not possible to put in the miles needed to be successful and not feel some level of discomfort.  Likewise, if your mental health is mainly rooted in your ability to move A LOT, it’s not possible to do so and not have parts of your body hurt from time-to-time.  Thus, pain isn’t something unfamiliar to me.   From the age of ten I’ve struggled with back pain, since the age of twelve I’ve had ankle problems, my first knee injury happened when I was thirteen or fourteen, and I’m not unfamiliar with shoulder issues from lifting too much. At the same time, I wasn’t alone. I watched my parent and siblings struggle with many of the same sports-related injuries and the response was the same – suck it up.   No matter how much it hurt or what it was, the response was the same: suck it up and eventually it will get better.  Paired with this was the sentiment that doctors didn’t know what they were talking about and their main purpose was to take your money and not actually help you. Over the years the “suck it up and doctors don’t help” mentality repeated itself over and over and over in practice when it came to how my parents taught us to respond to injuries. When your sister gets into a bike accident and your Dad refuses to take her to hospital and says things like “if you don’t stop crying, I will take to you to doctor” as if actually seeking medical care is a punishment, you can fathom why I was so stubborn about how I dealt with injuries.    I remember being yelled at because I tore a ligament in my right ankle and it meant I couldn’t run x-country my senior year of high school.  This later would appear in my ankle history as one of the many injuries to my right ankle which I never saw a doctor about.

Compounding what my parent taught me about how to cope with pain, are the ideals society has about pain experienced by demographics I fit into.  These demographics being I’m female and I don’t weigh 110 pounds.  I didn’t really experience the gender stigmas until after my injury.  We’ll talk about this later.  The 110 pounds piece is a more universal issue within healthcare.  It seems like almost every day you can find an article about how the medical community will attribute literally anything, even going bald, to extra pounds you may be carrying around.  I have never been a small person and I never will be.  I can thank my hockey player parent for a frame which will never fit into a size two.  After 34 years, you get to a place where this is okay - except when it comes to those stupid BMI charts.   When you run a marathon in just over four hours, go to the doctor a few weeks later, are told you’re obese, and need to lose weight - there is something fundamentally wrong with this picture.  There was a period of time where I wasn’t a healthy weight, however, the messaging I received from the medical profession as a whole is I always need to shed some pounds and no matter how fit I look, how great my vital signs are, or how good I feel, the fact that stupid chart says I’m not healthy means I’m not. When you take a person who is already averse to seeking medical care and layer on a lifelong battle with the BMI chart (which for the record there is has been a pile of research saying the chart is a pile of poo) it only solidified for me - doctors are not there to help.

During my 20’s I avoided doctors like the plague.  I went to get birth control, shots I needed to play sports, and a few ER visits when I thought I broke a bone or two.  Even though I refused to seek medical care, it didn’t mean I didn’t hurt myself. During this time I had all types of smaller injuries.  Each time I used the same tactic – ignore it until it gets better.  If it was really bad I would ice the area and maybe take some Tylenol.  For the most part, this worked pretty well.  Everything healed to a point where I could continue to participate in the activities which made me happy.

When I injured myself, I didn’t have a primary care physician, I hadn’t seen a doctor since I blew apart my patella tendon three years previously, and “routine medical care” was not in my vocabulary.   When I had my first surgeon appointment my general thought was this was another injury to work through.  I really thought I would have one surgery, do some limited PT, and be back to the mountains in no time.  I first realized this was untrue in the first ten steps I took after the surgeon told me I could start to walk without crutches.  It was clear to me this wasn’t a situation where I could just “suck it up.” The fact I could even acknowledge this was a win from my perspective and was the main reason I even went to PT. If it had been any better, I probably would have skipped PT like I did when they told me to go for my knee two or three times before.  Over the next few months, I started to realize my ankle hurt – a lot.   Pain at this point looked like my ankle was a cantaloupe on most days and was six shades of blue and purple.  There were several surgeon appointments where I would say things like “why does it still hurt?” or “why does it look like this?” and the responses were poor.   They ranged from how I needed to be more patient to how it might be helpful if they broke it again and reset the bones (this was a mean joke).  

This is where I started to realize my gender was playing a role.  I was at a disadvantage because I was awful at acknowledging something hurt and because I am a woman.  Pain scales don’t make any sense to me and I believe I routinely picked numbers which were much lower than what I was feeling, because it was some sort of sadistic way of demonstrating strength.  Even with all of this, every single time I told a surgeon, nurse, or PT I believed pain was the reason I thought something was still wrong - the response was I was wrong and needed to give it more time.  Much like the pile of articles out there which say if you aren’t a size two doctors will give you a hard time, there are even more which discuss how gendered perceptions of strength impact the medical communities ability to treat women’s pain.   As a society, we believe men are strong and women are not. Thus, when a woman goes to the doctor and says “it hurts!” there are hundreds of years of gendered conditioning in the doctor's response, which usually comes out in some version of the woman is over exaggerating.   From a research perspective, you can see it in the length of time it takes women to be diagnosed with chronic conditions vs. men, the shameful rates at which women die giving birth, how quickly women are given pain medicine in emergency situations, among others.  It doesn’t matter who the medical professional is, in general, they all think on some level women are complaining – even if they don’t know it.  

Over time I started to realize the pain I was experiencing was the byproduct of the fact my ankle wasn’t functional.  What this created for me was a more comfortable context in which to describe my ankle hurt.  There’s a difference when something doesn’t work correctly and when it hurts. Although they are related, they aren’t the same thing.  For me, my ankle gave out all the time because I had a nonfunctioning ligament and my bones weren’t in the correct place.  When you have nonfunctioning ligaments and bones in the wrong place - it hurts.  Having said this, when I started to tell my doctors my ankle was giving out all the time and I didn’t feel safe walking around town, let alone walking up and down a mountain, all of sudden my pain mattered to them.  Granted my ankle gave out the entire time and if they had listened to me when I said it hurt and thought “huh, maybe her cantaloupe sized ankle means something is wrong and maybe I should tug on it a little bit,” they would’ve found my ankle was widely unstable much sooner.  At the same time, my pain didn’t matter to them.  It mattered when I said it didn’t work correctly.  My experience with my first and second surgeons only further solidified my ideas about pain.  If they didn’t care when I finally acknowledged I was suffering and it was super clear my ankle wasn’t happy, then why should I care?  By my third surgery, I was pretty sure my hockey player parent was right and doctors don’t care and they were in fact there just to get my money.  

There are so many reasons I am thankful I went to a specific surgeon in NH.  One of them is he took me seriously and he took my pain seriously. I remember during our first visit he asked me to point to where it hurts.  At this point, I was so truly upset about my situation my response was “The whole thing hurts but I don’t really care, I just want it to work.”   He didn’t say anything in response to this, although I sometimes wonder what he actually thought.  I quickly realized something was different when a few minutes later he did a stress test on my ankle.   Basically right after he finished, he said: “I know that must have hurt and I’m sorry.” At the time I didn’t realize the significance of this statement and responded with my standard “it’s fine,” to which he made a joke about how he knows that wasn't true because his wife says “it’s fine” all the time and it’s not.

What really happened was from day one he communicated to me, without actually saying it, that when I said something hurt he would take it seriously and do something about it. This was something I had never experienced with my previous providers and I now realize was an invaluable piece of my recovery process.   After my fourth surgery, I realized something wasn’t right with my foot.  I had had these realizations several times before and after a period of time I would reach out to my surgeon’s nurse and they would either tell me to wait until my next appointment or would just flat out ignore me. Thus, for the most part, I just stopped saying anything until I actually saw the surgeon every six weeks or so. This time it was different.  I had a cell phone number, which was actually the surgeon’s cell for work.  I didn’t need to call a nurse and leave a message they wouldn’t respond to for a few days.  I could send a simple text and the person who could actually help me would respond pretty quickly.   Making people deal with red tape when they feel awful doesn’t make any sense.  It creates barriers and people like me will just give up.  Having a direct line of communication to a provider, however, who clearly took me seriously, didn’t give me an excuse to not engage.  If it I didn’t reach out it wasn’t anyone’s fault except my own. After a day or two of deciding whether my foot was bad enough to warrant using the cell number I had, I reached out. I got a phone call within an hour or two and the content of the call was starkly different.  He didn’t spend any time telling me with time it would get better. He listened to what I was struggling with, had a somewhat clear idea of what was causing it, explained it to me, gave me some meds he thought would help, and all of this happened within the same three hour period of time.  It was new to have someone take me seriously without question and to respond promptly to my concerns.  

Over the next several months there would be a pile of similar interactions with the same outcome. After a follow-up appointment revealed one of my toe bones wasn’t in the correct spot, I had a pile of bone spurs, and cartilage damage visible on an x-ray (you usually can’t see it on an x-ray), the surgeon made a game plan to quickly address my pain.  At this point, something was quite different – it was just pain.  My big toe worked just fine.  It hurt a ton because my cartilage was worn away and my bones were rubbing against one another.  This difference didn’t seem to matter to the surgeon.  It didn’t seem to matter my ankle wasn’t functional and toe just hurt.  He treated both the same.  They both were problems which could be improved.

While my doctor was being super helpful, I basically had an emotional breakdown.  Like I shared earlier, it was much easier for me to express my ankle pain in the context of function.  It made me feel more comfortable and the doctors responded better to it.  With my foot, the function issue wasn’t the same.  My big toe bone was elevated, which was limiting my toe’s ability to flex properly. Although this is a function issue, it wasn’t like my ankle which was giving out all the time.  I could hike, run, walk, and do pretty much everything I wanted to – it just hurt all the time.   This felt much more complicated to me, because a fifth surgery was looming and everything I was trying was solely in an effort to lessen my pain.  Custom orthotics and cortisone shots weren’t going to move my toe bone, but they could, in theory, make my foot feel better.  When all of the conservative treatment proved to not reduce my pain enough to give me couch free days, my only option was surgery. My fifth surgery challenged a lifetime of how I handled pain.  What I was faced with was deciding between “sucking it up” and taking a pretty drastic step - just to have less pain.  For someone like me, this seemed like an impossible decision.  On one hand, I was so sick of being in pain every day and on the other hand, I was tough and I could out-stubborn my big toe for sure - right?

On October 4th I went to get a cortisone shot and discussed my MRI results with the surgeon. After reviewing my MRI, which was a lot of the same “this is not good” language I had heard about my ankle so many times before, the surgeon started to discuss surgical options.  I’m not sure what prompted it but I promptly burst out into tears and began to explain how I couldn’t do this anymore. I couldn’t end every day on the couch with a pile of pillows and I was tired of making decisions about what I could and couldn’t do physically and socially.  I didn’t want to say "no" to my friends when they asked me to go out to dinner because I had gone hiking and could barely walk.  I also didn’t want to say "yes" to them and cry myself to sleep later because sitting at dinner had made my foot feel that much worse.  The life choices I was forced to make on a day-to-day basis weren’t working for me and I needed some relief.  I’m not sure if the tears were because I was in pain, how the pain was effecting me, or because I actually acknowledged the other two.   This was the first time I cried in front of any medical provider and this includes when they mushed my bones back into place on day one.

I signed the surgical release on the 4th, marched out to the surgical scheduler and plopped myself on the docket for November 7th.  The following month felt like mental torture.  The surgeon was unclear on which procedure he was going to complete because he couldn’t clearly see the extent of the damage to the joint on the x-ray or MRI.  Two procedures were on the docket: one of them was minor and mainly rooted in creating more space in my toe so things would move better.  The other was fusing the joint.  This would mean the joint would never move again and if it can’t move, it can’t hurt.  Clearly, option two is much more invasive.  Unlike my ankle surgeries, which Dr. Google usually had pretty good things to say about or nothing at all, toe fusions are a highly controversial topic online.  Since they are much more common than having your deltoid replaced, there are many more people who chime in.  Also, since they are much more common, the medical community puts more effort into finding new ways to address the issue.   There is only one way to fix to a blown apart deltoid and there are six or seven ways to address big toe arthritis.

I spent those four weeks reading every horror story about toe fusions and every doctor who described them as modern medical torture.  I spent a lot of time questioning whether it was worth feeling better and if it would actually even make me feel better.  My biggest concerns were around function.  Dr. Google has an awful lot of info about how people with fused big toes can’t run or hike.  For me, opting into a procedure to lessen pain, which meant I couldn’t participate in the activities which make me happy, wasn’t an option.  At the same time, my surgeon had told me twenty times, because that’s how many times I asked, I would be able to run and hike with no problem.  I had the same conversation in my head over and over and over “surgeon guy says this will make me feel better and I can do everything I want to.  I don’t have any choice but to believe this.”  

On November 7th I had my big toe fused with a plate and eight screws in an effort to relieve the foot pain I have been struggling with on a daily basis for over a year.  The only reason I did this was to feel better. My toe won’t work any better, in fact, it won’t ever move again and my other joints will need to work harder to make up for the lack of range of motion.  To me, this was a huge test of how I perceive and treat my own pain. With the help of “surgeon guy,” I was given the space to acknowledge some levels of pain aren’t okay and it’s okay to throw in the preverbal towel and do something to make yourself feel better. At some point, you’re not punishing anyone except yourself by not addressing something that hurts.  

I have been put through the wringer when it comes to conceptualizing what pain even is and managing all the bullshit society throws at you when you say something “hurts.” Although I’m not sure I am fully reformed in my non-pain acknowledging ways, I am more aware “sucking it up” is not always the best option and it’s not even smart. I’m also keenly more aware not every doctor is evil and there are some good eggs out there.   I feel like both of these are invaluable life lessons.

#recovery #healing #surgery #pain

[vthiker09]

Taking Opioids During the Opioid Crisis

I’m fairly sure there isn’t a person in America who isn’t aware we have a big problem with opioids.  It feels like every day there are new reports about the dangers of opiate addiction, the increase in overdose rates, and major efforts by Congress to slow what feels like a pending train wreck.  Many states are actively suing Purdue Pharmaceuticals, saying they were well aware of the addictive properties of the drug they ruthlessly pushed doctors to overprescribe at unsafe dosages. Regulations are coming out in massive numbers both at the state and federal levels, all in an effort to decrease the number of people who end up addicted or dead.  At the same time, taskforces comprised of medical professionals, police, non-profits professionals, substance use treatment professionals, and concerned citizens sit in public forums trying to figure out how it got so bad and how we can fix it.

While all this is happening, doctors are still prescribing opioids.  At this time, there isn’t a viable alternative to acute and chronic pain management.  I’m sure many people would say the idea opioids are best at managing pain is wrong.  We’ll talk more about why I think is true in a little bit.  Recently, a panel of thirty doctors conducted a study at Johns Hopkins and released guidelines on how many opioids to give a patient post-op for 20 common procedures.  Long story short, orthopedic procedures routinely are listed as procedures which require the most, if not the maximum, number of pills perceived as safe while still effectively managing post-operative pain. In more basic terms - when people drill holes in your bones and put screws in them it will hurt.  During my two year stint in the orthopedics world, I’ve seen a drastic change in the way in which doctors address acute and chronic pain, how they treat opiate prescriptions, and if I am honest - it’s not great. 

During my very first pre-op visit, the surgeon told me “this is going to hurt” when he described the procedure I would undergo a few days later.  When a surgeon says this, I feel like you know it’s true.  The nature of their profession is they put people in uncomfortable situations in an effort to make the overall situation better.  After surgery number one I was given 30 2 MG Oxycodone tablets and was told to take 2 tablets along with 1,000 MG of Tylenol every 4 hours.  I’m good at taking things when I’m supposed to and not taking more than I need. At the same time, 30 pills don't last long when you are taking eight a day. A few days later, I called in a refill and had no problem getting more.  During the second bottle, my leg started to feel better, so I took fewer pills. This bottle probably lasted a few weeks. I called in a third refill and had no problem having this filled. I ended up finishing this bottle a few months later and never needed to have it refilled.  Overall I was prescribed 90 pills for my first surgery.  I was given some handouts about the potentially addictive qualities of the drug I was taking, but this was pretty much it.  I never felt like the nurses didn’t believe me when I said I needed them and I never felt like they were judging me when I called to ask for more.  I guess this makes sense when you had your bones rearranged with several clamps and a few screws thrown in there to hold it all together.

After surgery two I was given five 2 MG Oxycodone tablets to take as needed. My second surgery was hardware removal and on the pain scale was quite minor.  I believe I took two pills and the rest sat in my medicine cabinet for a long time.  Between my second and third surgeries, Vermont passed a new law about opioid prescriptions for acute pain management.  I’m not well versed in the details, but I did see the impact it had when it was first implemented.  My third surgery was only a few months after this new law became effective and there was a big change.  Before my surgery, more time was spent on lecturing me about the potential negative consequences of taking opioids than the actual details of the procedure.  I was given much more information about addiction, how to get help, and alternative pain management tactics.  I was asked to sign a consent acknowledging I knew and understood the dangers.  On the day of my surgery, the nurse couldn’t find the consent I had signed only a few weeks earlier and asked me to sign a new one.  She brought it into the OR and asked the surgeon to sign it.  He rightfully so became frustrated and said it was not important at the time.  I’m glad the surgeon acknowledged correctly fixing my ankle was more important than a piece of paper which said I knew the drug I was going to take might ruin my life. Post-surgery I was prescribed 30 5 MG Oxycodone tablets.  I was told to take 2 every 4 hours along with 1,000 MG of Tylenol.  Most of the time I only took one and when I ran out, I called in a refill with no problem.  The second bottle contained 28 pills and I never needed another refill.  Thus, for my third surgery, I was prescribed 58 pills.

My fourth surgery happened in New Hampshire.  Much like Vermont, New Hampshire has a big problem with opioids. Both states are routinely seen in the national news as states who are hit hard by the crisis.  Both states are routinely passing legislation to curb prescriptions and divert patients to alternative methods.   After my fourth surgery, I was given 30 5 MG Percocet tablets. Percocet tablets already contain Tylenol, so I only had to take these pills. I ended up calling in a refill and was given 21 more pills.  I didn’t need another refill after this.  I was given almost no information pre-opp about the medication I would be taking and no one talked to me about it.  I didn’t have any problems getting a refill and it felt like it was just part of the operative process.  

Over the course of my operative journey, I was prescribed opioids quite a few times.  In total, I was given 204 pills.  In these instances, the medication was prescribed for acute pain.  Between my fourth surgery and today, I found out I developed severe arthritis in my big toe.  Mainly a result of walking around without a functional ankle for a year and a half and what looks like a missed fracture of my first metatarsal, my big toe isn’t in good shape.  I first started to notice an issue after my third surgery.  My second surgeon thought it was a tendon issue and gave me some stretches to do.  After this didn’t work, my PT thought it was nerve pain caused by a pinched nerve in my back.  After a multi-month long process to learn I didn’t really have back issues and certainly didn’t have nerve damage, my third surgeon thought the disaster that was my ankle was the cause of my foot pain and when this was addressed my foot would be much happier.  When this proved to be untrue, an x-ray and MRI revealed my first metatarsal is severely elevated, I have a pile of bone spurs, my toe bones are warn, and I have cartilage damage.  This all boils down to arthritis, which is a very common chronic pain condition.  Having said this, I found this out because my foot hurts – a lot.  It hurts with every single step I take.  Certain activities hurt more (hiking and running) and some things I can’t do (planks and walking around without shoes on).   I’m limited to basically three pairs of sneakers and every single day ends with me on the couch with a pile of pillows.  Between my fourth surgery and now I have tried physical therapy, ice, heat, NSAIDS, Tylenol, a pile of creams and essential oils, stretching, massage, rest, elevation, custom orthotics, and a cortisone injection.  

I ran into some roadblocks with getting the cortisone injection on the schedule and learned it was going to take a few weeks.  At this point, I was done with being in pain 24/7.  After almost two years of varying degrees of constant pain, I threw in the preverbal towel.  Between the delay in scheduling the shot and waiting eight weeks for the orthotics, only to learn they weren’t going to fix my issues given the severity of my joint degeneration, I was basically desperate for another option.  My NH surgeon texts with his patients, which I wish every surgeon did.  Anyway, I sent him a text and explained I needed something to lessen the five to eight level pain I was constantly experiencing.  I explained I was looking for a temporary solution until I was able to get the cortisone injection or if that didn’t work until I could get on the surgical schedule.  

He sent me a text back saying he would call in Celebrex and Tramadol. Both medications are commonly used to treat arthritis and Tramadol is an opioid.  A few days later I went to pick up the prescriptions with no issues.  I was given 37 50 MG Tramadol pills.  I could take 4 a day, however, 2 does the trick. This lasted until I went on 10/4 to get the cortisone injection.  When I saw my surgeon on the same day I asked him if I would need the Tramadol anymore. He said ideally not, however, he wasn’t confident the shot would improve my situation. He asked if I needed a refill and I said “yes.”  He said he would call in a refill and ended up forgetting to do so.  In an effort to not nag him, I called the med refill line for his practice.  They sent 5 pills in.  When I went to pick these up the pharmacy didn’t treat me the same way. I sensed a judgmental vibe and was asked to provide them with my license.  They wrote down my address and license number.  I have no idea what this information is used for.  The five pills were a temporary prescription until my surgeon remembered to call in an actual refill.  A few days later I went to pick up 30 more pills as the cortisone injection made my foot feel worse for a few days and then it just returned to a slightly less puffy version of the same painful toe.  The pharmacy seemed less alarmed by this prescription and didn’t really blink twice about it.  At this point, I take opioids every single day to manage chronic pain while I wait for my surgery date on November 7th to fuse my big toe joint together and thus, relieve the moderate to severe pain I’ve felt daily for the last year and a half. 

With the exception of my third surgery, I never felt like my medical providers thought it was a bad idea to take opioids and it was clear to me they thought it was necessary given my medical condition or the procedure I had done. While I don’t feel any judgment from my surgeon around the medication he’s providing me with currently and I haven’t had any problems from his practice around getting a medication I clearly need, the rest of world is quite different.  Here’s how:

Social Media: I don’t know about everyone else’s accounts, but my social media is relentless when it comes to the opioid crisis.  It’s a compilation of people sharing new studies, reports of overdoses, stories of children in cars with parents who fall asleep while under the influence, debates over safe injection sites, and articles about laws and efforts by local authorities to address the crisis.  The worst part, however, is the comments people make. They vary from people who understand the complexity of the issue, particularly when it comes to chronic pain and people who very clearly don’t believe people who struggle with addiction should be allowed to live.

Friends: People have opinions.  It’s also really hard to hide that you’re taking a medication which prevents you from drinking when you live in a state which bleeds beer.  When people find out you are taking a narcotic, my experience has ranged from they totally understand because they have listened to you struggle for years and know you wouldn’t take something just for fun, to people who don’t believe in taking pills because they never really have been in pain and thus don’t understand what it means to feel like you don’t have another option.   They are there to tell you you’re making a bad choice or frown when you tell them your medication makes me you drowsy and it’s hard to focus sometimes.

Family: My parents have told me from day one to not take pain medication.  My Dad routinely lectures me about how awful they are and has told me the same story about my sister and how when she got into a major car accident, he told the doctors to not give her anything except Tylenol multiple times.  Even though the doctors said this was borderline insane, while my sister fought for her life, my Dad knew better.  He also likes to pair this story with his own story of how he had both of his hips replaced within a few days of one another and didn’t take anything other than Tylenol.  Both stories come with a tone of pride because he believes he beat the pain monster. My parents still don’t know I’ve taken opioids. Oddly, they were totally okay when I told them about the nerve meds I was taking which have since been proven to cause permeant brain damage and the muscle relaxers which run a similar risk of addiction.

Work: I happen to work for a company who offers an Electronic Health Record product to mainly non-profits.  Many of these non-profits are seeing the effects of the opioid crisis on the front lines and it impacts their work on a daily basis.  In addition to this, some members of my team are heavily involved in Congressional efforts to address the opioid crisis.  We routinely get updates on the progress of these efforts both via email and during team calls.  The messaging is mainly routed in prescribing fewer pills and suing the pants off the companies which created the problem, to begin with.

People have opinions when it comes to how to treat pain and their opinions become much stronger when your pain management entails taking opioids. Over the course of the last two years, I really never had a problem with my medical providers.  I always felt like we were on the same page.  I took what they gave me as directed, usually took less than I could have, and stopped taking them within a reasonable period of time. Although I don’t like taking opioids because they make me tired, dizzy, nauseous, and it’s hard to concentrate, these side effects are more desirable than the alternative, which is feeling awful all the time. Having said this, the pressure I feel from the above four places (Social Media, Friends, Family, and Work) make me feel really bad about taking something that I actually need.  

In the case of social media and work I know it’s not intentional.  I’m sure if I actually talked to them about my situation, they would say something like “oh no, Erin this isn’t about you, you actually need them.”  At the same time, so did the millions of other people who ended up addicted to them.   I can’t tell you the difference between those folks and myself.  I’m pretty sure no one really knows the difference between people who can take opioids and end up okay and those who end up injecting heroin multiple times a day – although there is a ton of theories out there which attempt to explain what makes people more or less likely to end up in camp addiction.   At the same time, those comments about how no one needs opioids and how the newest study says Tylenol will do the trick are frustrating.  It’s hard to hear those statements all the time and not take them personally and wonder if what you’re doing is a fast track to a life you really don’t want. At the same time, I don’t think crying yourself to sleep every day is a viable option either.   Personally, the worst part is the strong language around alternative pain management strategies.  Much of the current guidance says to use opioids as a last resort after PT and the other 20 or so things you can try fail.  Here’s the thing – do those people have any clue what it’s like to work through PT and those 20 other things and have them all fail?  Do they know what it’s like to hope the next thing will actually make you feel better and then realize it doesn’t and then end up taking a pile of pills just to make it through the day?  I bet if they did they would be a little softer in their messaging.  

When it comes to my friends and family I don’t think they have an excuse. We have differing opinions and I think they are wrong.  I’m pretty sure if any of them had to deal with what I’ve had to deal with, they would do the same thing.  I hope for their sake they never have to make these decisions and deal with being judged for doing so.

The opioid crisis is widely complicated and I’m not going to try to solve it.  At the same time, my intent is to show people these pills are not always prescribed for no reason, or in excess, and not everyone ends up at the methadone clinic. In my case, I was given low doses for short periods of time, I took them as prescribed, and their purpose was to make life doable.  When I could make it through the day without them, I stopped taking them and I didn’t have withdrawal symptoms.  I just stopped and life was fine.  I feel as though the social pendulum has swung too far into shaming those who take opioids and it’s not necessary. My hope it there would be some middle ground between appropriately treating patient’s pain and not fostering a new generation of addicts.  Having said this, I would particularly caution those on social media. You have no idea what your friends are taking and why and a lot of what’s out there is simply bullshit.  It fosters a culture of shaming people, which actually makes the situation worse.  It would be better to keep the lines of communication open between patients and providers.  People are going to do what it takes to manage pain and it seems like a much better idea to keep this within the confines of the medical world vs. people trying to do it on their own.  Perhaps we can all be a little kinder to those around us and at acknowledging the complexity of this issue.

#opioids #recovery #surgery #pain

[vthiker09]

Have You Tried?

There are two aspects of being gimpy you can’t really prepare for.  The first, is the level of visibility you of all of sudden gain.  We are all visible in the sense that when we move around the world, people acknowledge our physical presence.  People will say “hi,” hold doors open, move if you’re about to bump into them, etc. Clearly, how you are acknowledged by the world differs based on your gender, race, physical appearance, among other characteristics.  At the same time, the world knows you’re there.  When you are gimpy, the world not only knows you’re there, but you suddenly move through the world with what will feel like huge blinking lights attached to your body and a sign which reads “ask me what happened and give me advice.” 

Before I hurt myself I was not a homebody.  Since I work from home, I spent quite a bit of time purposefully leaving the house.  The Oatmeal has a great series of comics focused on people who work from home.  They always start with well adjusted human beings degrading down to a sloth like figure who can barely speak English.  All comedy is based on some level of truth and if you work from home, you do in fact have to try a little harder to not become the sloth like figure in the comic.  At the same time, I would not call myself a “people person.”  Much like every other Vermonter, I like the woods better than most people and if you aren’t one the of twenty or so people I truly enjoy, I don’t feel a strong need to talk to you.

After I hurt myself, I became a home body.  This became my truth for several reasons.  First, the world is not gimpy friendly.  There are entirely too many doors, stairs, uneven surfaces and not enough pillows, couches, and ice packs.  Besides the practical difficulties being gimpy poses, there is another piece which I found much more challenging: how people choose to help.  In one very crappy step, I had become much more visible than I ever wanted to be and people wanted to help me.   At first, going out in public was something I just didn’t want to do.  I quickly realized the way in which I moved through the world was no longer really up to me.  My neon lights and sign, which were physically represented by my crutches and cast, all of sudden became an open invitation for people to stare and help me.

By surgery number four I became more comfortable with the attention, but at first I hated it.  I really truly hated it.  I hated it because I wasn’t happy about my reality and it seemed when I tried to manage the outside world, it was the only aspect of my existence people wanted to focus on.  All of sudden, people who before my injury would pretty much ignore me, wanted to know exactly what happened, how my healing was going, and were ALWAYS there to offer advice.  It didn’t matter who I was with, where I went, or what I was doing, my gimpy status had broken down the stranger danger walls and everyone wanted to talk to me.

Beyond 100% strangers becoming involved in my medical care and general well being, there were my friends, family, co-workers, and the 650 or so friends I’ve collected on social media over the years.  The visibility piece of being gimpy was instantaneous.  The second and much more prevalent behavior I’ve experienced from my human counterparts came a little bit later.  I began to notice as folks asked me “how are you?!?,” if the answer was not “great! I’m so okay,”  the response went something like this:

“Insert some sort of that sucks or I’m sorry statement paired with have you tried?”

All of sudden, I had a couple hundred sources of medical information at my disposal and if I’m to be 100% honest - it was awful.  My situation is unique because I have struggled for a long time.  It’s not unique because I’m not alone and I know there are a pile of people who break bones and heal without surgery and certainty not four of them.  Thus, I had the pleasure of the advice waterfall for much longer and it only gets more powerful the more you struggle.

At first, it was little things about how someone’s relative, friend, co-worker, mail person, etc. had used ergonomic crutches, walking stands, scooters or some other mobility enhancer to make moving a little bit less awful.  This advice was mostly unsolicited based on the sole length of time I was going to be on crutches.  At first, I had zero interest in bettering my mobility.  I had rules about the number of hours my leg needed to be above my heart, I felt awful, and my life didn’t require me to move all that much.  After surgery three, I would finally give in to the scooter because it made carrying objects easier.  The scooter, however, really had little to do with mobility and more with my mental health and a need to have some false sense of independence.  

The advice waterfall really started to pour after my first surgery and when I began to realize PT was not working for me.  What I quickly realized was I couldn’t talk to people, about how I was struggling, without them offering something which a) I had already tried or thought about trying and b) they thought would “fix me.”  With a few exceptions, it really didn’t matter who it was - if I was honest about how things weren’t 100% great, they were there to fix it.

We’ve all had less than great circumstances where we go to people and vent.  In its essence, it’s a very basic human behavior.  Something sucky or awful happens and you want to talk about it.  In most situations, people will respond with some level of “I’m sorry you are struggling.”  Clearly, the level of empathy will vary based on if it’s your local coffee shop got your order wrong to a family member passed away.  At the same time, you don’t often hear “I’m sorry for your loss - have you tried yoga?  My friend lost their mother last year and without yoga, I’m not sure where they’d be today.”  You don’t hear this because, over time, people have learned there are some things you just can’t fix for people.  More traditionally understood forms of trauma are universally understood as areas you a) aren’t qualified to fix and b) it’s not socially acceptable to try.  When was the last time you told someone who experienced sexual violence about the potential benefits of meditation?

Medical conditions, on the other hand, do not hold the same level of hands off awareness as their emotionally fueled trauma counterparts.  Medical conditions are seen as black and white - I broke a bone and blew apart basically everything in my ankle and this can be fixed.  Medical conditions also fall in the highly contentious world of people in camp traditional medicine vs. people in camp alternative forms of medicine.  When you mix something other people view as “fixable,” with something people have so many opinions about - you get an overwhelming amount of advice. 

In order, these are the top ten “fixes” people have suggested to me over the last twenty months:

1. Yoga  2. Acupuncture 3. Second or Third Opinions 4. Where to Seek Medical Care 5. Chiropractors 6. Alternative Mobility Devices or Braces 7.Marijuana 8. Essential Oils 9. Exercise 10. Vitamins or other “Health Foods.” 

If I am to be honest, many of these I did end up trying.  I got a second and third opinion, I ended up seeking care from a provider who was recommended to me by my parents, I used a scooter, I tried smoking weed and edibles, I went to a Chiropractor, I have every useful essential oil for my problems, I workout probably too much, and health foods are my jam.  At the same time, minus the provider recommendation, I didn’t do any of the above because someone told me to.  I did them because I have access to all the same information about their potential benefits the rest of world does and in most cases - one of my medical providers thought they would help.  That’s right - the people who I most often actually listened to were my medical providers.  You know why? because they went to school for a wicked long time and in theory, knew how to actually fix me.

I know people offer advice because they care about me and want me to get better and back to the activities I continue to truly miss.  I know it comes from a good place.  At the same time, this is what I have to offer when it comes to offering advice to someone with a medical condition:

1. You are not a doctor.  Even my PT’s, who are much more highly qualified to try to fix me, often times were reluctant to try to diagnosis what was going on or offer how to fix the problem, because they knew they weren’t qualified to fix me.  Yes - medical issues are very black and white.  Certain bones go in certain places and how tendons and ligaments should look and function is widely understood by the medial community.  At the same time, how to fix said problems can be complicated and they don’t let people even try until they’ve proved over and over and over they can actually do it.  This is why we all aren’t surgeons.  Remember - I had to go to three surgeons before I found someone who could actually fix me and these are the people who are qualified.  Yoga wasn’t going to do the trick - trust me.

2. This part is more important and if I can impart anything as part of my blog escapades it’s this: becoming ill or getting hurt is traumatic.  Without going into the less than pleasant details: I’ve experienced trauma in the truest sense of the word.  When I reflect on how I reacted to those experiences, how long it took to move past them, and what will never be the same - I have experienced all the same emotions, struggles, and non-physical pain as I did in those other situations, since I’ve been hurt.  I have cried so many times.  I have had panic attacks.  I have lost hope, become situationally depressed,  have thought about reverting back to less than helpful coping mechanisms, and have thought about hurting myself.  There were more times than I would like to admit, I thought it would be easier if I wasn’t around because things weren’t going to get better.

Yes - I broke my leg and damaged a pile of ligaments and tendons.  I also almost died on a side of a mountain, loss all my freedom, had to learn and adapt so much just to complete basic tasks, have basically had an identity crisis because many of things which were “Erin,”  I couldn’t do and still can’t do, and there were times when I didn’t know if life ever would be the same.  

Just like all those times when I went to people because I was struggling with how to cope with life situations, I went to people because I was struggling emotionally.  I didn’t need people to fix me.  I needed people to listen.  I cannot emphasize this enough - I needed people to listen.  I needed them to say “that sucks - what can I do to help?”  or just sit with me and pretend I was the same “Erin” they were friends with before I got hurt.  Granted there were people in my life who did this and those people I will be forever thankful to.  At the same time, there were too many people there offering yoga, who didn’t seem willing to listen about how I had cried myself to sleep for the 200th time.

3. If we think about what the difference is between more traditionally understood forms of trauma and medical conditions is - it’s visibility.  If you get mugged at gun point - you get to choose who knows.  You seek support from those you know will provide you with what you need and you will leave everyone else in the dark.  When you’re sick or hurt - there’s no hiding.  Everyone becomes involved in your trauma and what they have to offer isn’t always what you need.  This doesn’t mean they are bad people or they are trying to hurt you, it just means the net is bigger and because they aren’t bad people, they will ask you how you are.  I found it helpful, over time, to be careful about what I shared and with who.  There became a time when I couldn’t emotionally cope with the suggestion waterfall and the only way to stop it, was to say things were “okay.”  When I started to do this, I felt more in control when it came to who knew what and the support I did get.  I found this helpful because my main supports were strong and I found comfort in less high quality help. 

4. Unless solicited: don’t offer advice to someone who is sick or hurt. It’s overwhelming and 99.5% of the time, it’s not the real answer.   Just like your friend who just broke up with their significant other, your sick or hurt friend needs you to be there for them and they like Ben and Jerry’s just as much.  Your emotional support will be more appreciated than your desire to fix them because in reality - you cannot fix a person with a complex medical condition.  I know this may feel uncomfortable because we care about one another and want life to be, in general, “good.”  At the same time, it is more helpful to meet the sick or hurt person where they’re at and all you need to say is “I’m sorry and how can I help?”  I promise you this is so much more helpful than acupuncture ever will be.

#gimpy #advice #medicine #healing #trauma

[vthiker09]

One Day

7:00 AM: Mike’s alarm goes off.  The dogs scream “feed me!!!!” in their doggy brains, followed by excessive tail wagging and dog nails clicking on the floor as they prance away with happiness.

7:30 AM: Mike comes in to say goodbye and have a good day.

7: 45 AM: Social media time begins.  Face book and Instagram, for the most part, have lost any actual appeal.  At this point, I usually just scroll through for the sake of doing something, paying little attention to the actual content.  At some points, particular people or posts will grab my attention.  Usually, the New York Times will have an interesting opinion article, which takes a little time to read.  Although they have recently learned I click more often on articles about the American healthcare system and have been providing me with a plentiful bounty of opportunities to start my day enraged by the hypocrisy of what we call “medical care.” 

8:00 AM: My alarm goes off.  My first thought is “I don’t want to move.”  I think this because I know it will be unpleasant.  Morning is the worst time.  Although my friendly appendage will be quite happy with the eight or so hours of non-activity and will reward me with less pain and less swelling, it doesn’t like to start moving again.  To enjoy this short time of the day where things are pretty pain free, I usually delay moving as long as possible.  Social media time continues and sometime expands into internet recipe time or I pull out one of the thirty or so books by my night stand.

Between 8:20 AM and 8:45 AM: Depending on the day and what my work schedule looks like, I finally get the gumption to actually move.  Earlier days usually are paired with 9 AM meetings.  Later days are paired with either an extra sore ankle or a desire to appreciate my painless period of time just a little bit longer.

8:30 AM to 9:15 AM: Using the crutches, move to the bathroom.  Even though these are the most painful steps of the day, remember - it will get better.  Take a shower.  Remember: put a towel close by so you don’t need to reach for one and make sure the crutches are somewhat near you.  Use the shower walls to help you put less pressure on your leg when you step in.  Never stand only on your bad leg and if anything requires balancing, make sure you’re doing it with your left leg.  The shower is slippery and you don’t have your brace on.  This is a danger zone.  Use the shower stool to help you get out.  Make sure your feet aren’t too wet because the floors are slippery.  Crutch back to the room and get dressed.  Putting on everything from the waist down at once is easier because you only have to stand on your leg once.  Make sure the laundry basket and fresh clothes are near by, it’s less steps.  Put your brace on and a sneaker - this will make walking easier and you have to anyway.  Grab your phone and purse with all your drugs and necessities for the day - otherwise it’s more stairs.  Walk back to the bathroom, acknowledging walking isn’t as awful now that you have the brace and shoe on.  Finish getting ready and walk downstairs.  Be sure to hold on to the railing and don’t bend your knee too far forward.  The surgeon said not to push range of motion and you don’t want to fall down the stairs.  Walk to the kitchen and get an iced coffee, provide Jinx with his morning ice cube, grab something to eat which is high in protein and healthy, grab a bottle of water, and walk to your office.

9:15 AM to 12 PM: Work.  Remember: your leg is not an excuse.  You have to actually work and be nice to people, no matter how shitty you feel.  It’s okay to reach out to people if you are having a hard day and be sure to do this. Also, take social media breaks, use your essential oil stress relief oil, and your 27 aromatherapy candles. All of this will help you be nice to other people when they are being difficult. If your leg swells - loosen the brace.  Take 220 mg of Aleve and 1,000 mg of Tylenol, but don’t do so until you eat something.  Aleve is awful for your stomach.  If your leg gets really sore, you can take the brace and shoe off, but you shouldn’t walk on it.  Bathroom breaks aren’t a big deal until it’s in the middle of a video call: will my co-workers notice me walk? will they notice my limp? how badly am I actually limping?  maybe they won’t notice because I’m super small on the screen anyway?  Should I just wait until the call is over?  

Lunch: Make sure you have enough time to move and get to your next call.  Stress over what you eat because you aren’t actually moving a lot and although you’re hungry, you don’t want to pack on gimpy pounds.  Pick something with protein and a pile of vegetables and head back to your desk.

12 PM to 5 PM: Work more.  Your limb will get more sore throughout the day.  This is normal.  If you get more stiff, you can take a break and go play fetch with the dogs. They will enjoy this and it’s good to get outside. If you feel motivated, go get the mail.  You can walk into the backyard and it’s actually easier - less stairs and more time outside. If sitting in a chair becomes too painful, there’s always the couch or the recliner.  I know - you hate the couch and the recliner, but it helps and it’s only temporary.  

5 PM to 5:30 PM: Bike time! or Bike time :( Remember: you like to exercise and the fact you hate the bike is a) because you associate it with being hurt and b) it’s not outside.  You can do it for 30 min and the surgeon says low resistance is key.  Don’t feel bad you can only do it on level 2.  This is temporary and it still counts as exercise - right?  Bring everything you need: phone, head phones, water, brace, and shoe.  otherwise, it’s more stairs for you.  Usually Mike comes home while you’re on the bike.  Be sure to be nice to Mike!  Say hello, ask how his day was.  No matter how much your day sucked or how much pain you’re in, it’s important to be nice to Mike.

5:30 PM to 6:15 PM : Strength time.  Bust out your yoga mat and off to ab town you go.  It’s okay you can’t do any meaningful weight bearing exercises.  Skull crushes with leg lifts count just as much as squats do.  Just because you can’t rebuild your calf muscle yet, doesn’t mean you can’t get some serious ab and arm muscles going.  It all counts - deep breaths.  You’ll get to the rest soon.

6:15 PM to 6:30 PM: Range of motion: 10 minutes of moving your ankle up and down.  No side-to-side yet.  Remember: the surgeon says don’t push range of motion.  If it starts to hurt significantly more - stop.  After you’re done with 10 minutes, get the orange resistance band.  50 planter flexion.  Ask Mike to hold the band so you can do 50 dorsiflexion movements. 

6:30 PM to 7:00 PM: Dinner.  Stress out about what to eat.  Make sure there are actually calories in it, but that it’s just not carbs and cheese although carbs and cheese are your favorite.  If it’s a bad day, ask Mike to get take out or help you cook.  It’s okay to ask for help and it’s possible to eat something healthy from a restaurant.  Grab your ice packs, take 1000 mg of Tylenol and move to the couch.

7:00 PM to 8:30 PM: Ice time!  Be sure to wear a sock or grab a towel.  Although ice feels great, you don’t want to burn your skin.  Once you’re good, take it off.  If the muscles on the bottom of your foot are sore, roll a tennis ball under your foot - this will help them relax.  If they are super stiff, you can soak them in Epsom salt for 20 minutes.  Ask Mike to get your bucket with hot water to do so.  If your calf is tight, use the roller.  Be sure to only roll your muscles and not too much.  Rolling a non-muscle isn’t good. 

8:30 PM: Go upstairs mainly because you are sick of staring at the glowing box.  Remember: the surgeon said if your ankle is super sore to use the boot to give it a break.  If it’s going to be sore, this is the time.  If you remembered to grab the boot, great! Otherwise ask Mike to nab it for you.  If you walk to get the boot, you mine as well of walked upstairs.  Be sure to grab your purse, phone, ankle brace, and shoes.  You will need them tomorrow morning.  Get ready for bed.  Do everything you can with the boot on, it will be less painful this way.  Once you are sure you don’t need to move again, take the boot off and change.  Get your bed leg pillows in position.  If your foot is still sore you can use your massage oil.  Remember: the surgeon said light massage was good for it.  If you care enough, you can put vitamin E oil on your scars.  Mostly you don’t care, but maybe you should?  Every few days make sure your scars will still move.  If they don’t - that’s not good.  Rub CBD lotion on your ankle.  You’re not actually sure it does anything, but it doesn’t hurt more, so why not?  Take 10 mg of melatonin so you can actually fall asleep. Also, spray your pillow with the anti-stress essential oil spray and rub the CBD oil based sleep stuff on your wrists. They are hella expensive, so they'll help? Your ankle will be quite sore and even the toughest person has a hard time falling asleep when they are in pain.  Time for 10 more min of dorsiflexion and planter flexion!  Again, if it hurts too much - stop.  Once you’re done - read, play on your phone, do whatever until you’re actually tired.  This is a good time to chat with friends if they are around.

10:00 PM: Bedtime.  To avoid post falling asleep moving, go to the bathroom.  Since you don’t have any protection and your foot is super sore, use the crutches.  When you come back, remove one of the leg pillows.  You don’t need to elevate your leg while you sleep, but the skinny pillow makes it less painful than if your leg touches your other much more bony leg.  Stare at your ankle for a bit and question: is it too puffy? did I do too much today?  is it actually getting better?  Take time to acknowledge this shit is super hard and you’re doing your best - a little self appreciation goes a long way. 

7:00 AM: Do it all over again.  Maybe today it will be a little better?

#recovery #surgery #a day in the life #gimpy

[vthiker09]

How Much?!?

At some points, it seemed easier to wallow in self pity.  When a string of what you perceive as “bad things” just keep happening, it’s easier to believe your situation is an anomaly and perhaps you are a victim of a string of bad luck.  When it’s luck, there’s nothing to change.  It’s just bad juju and maybe next time you should stay away from the black cat and avoid breaking the mirror.

On top of what I perceive as abysmal healthcare, I also struggled with my health insurance.  When it was happening, there were many tears and I felt like I just had the world’s worst luck.  I am smart enough though and am connected enough with current events, that I know my experience is not uncommon.  On what seems like a daily basis, I see reports of Americans who delay or don’t seek care because of the cost.  I see reports of people who in one town live longer because they have better access to healthcare and just across the street, people are dying because they can’t afford to be seen. If you’re interested - google “Texarkana and healthcare.” 

When you realize your situation is part of a greater crisis in America - which is we are failing to save lives because people can’t afford it, it becomes more important.  It becomes more important because insurance companies are monsters and they bank on people who can’t understand their overly complicated systems or don’t have the ability to advocate for themselves.  The fact they are monsters means we need to band together, share our stores, and make it known it’s not acceptable.  It’s time to put away the “I’m just one person - what can I do,” pull your pants up and make sure a) they don’t screw you over and b) people know if they do or try to.  They won’t stop if no one knows it happened.

In honor of my stump speech - here are my trial and tribulations with Aetna:

When I started working for a technology company in Manhattan, things were a-okay.  Benefits are administered through a third party and the third party seems pretty competent.  I had zero problems signing up for insurance and for the first year and half of my employment, everything was good.  I had a reasonable plan: $1,000 deductible, 80% 20% cost-sharing (Aetna pays 80% of the of bill and I pay 20%) up to $4,000, and then Aetna paid 100%.   My company paid 100% of my monthly premium mostly because the plan was cheap and I have good benefits. 

Sometimes, it’s almost funny to look at insurance claims.  It’s funny because healthcare in America is beyond expensive.  There is no way anyone but the rich of the richest could have paid for my medical bills out of pocket.  What this means is a) if I didn’t have insurance I wouldn’t be able to walk right now and b) I suppose this is why we have insurance.  At the same time, America is failing at providing widely available coverage and many of the plans available are awful.  I remember the days of $4000 deductibles and $9,500 out of pocket maxes when I was only making $30,000 a year.  Please explain to me how that makes any level of sense?

In December of 2016, my employer let me know Aetna was changing my plan effective 4/1/17.  They let me know because the monthly premium was going to go up significantly.  They were very reasonable about the cost hike and both my employer and the company who administers my benefits told me the only difference between the two plans was I didn’t have a network.  I could go to any healthcare provider I wanted and Aetna would cover it.  This seemed pretty great since networks can be innately limiting and limiting the already limited options you have in a rural state can lead to a whole host of problems.  They provided me with a description of my new plan and everything looked good to me.

After my second surgery on May 5th 2017, I did one of my routine “let’s look at the crazy bill I only have to pay a piece of  and a) be thankful I have insurance b) be thankful I can pay my piece and c) be mad we live in a country where a and b exists.”  This time though, I was in for an shock.  I opened the claims section of my account and instead of the 80% 20% I was used to seeing, I saw Aetna paid about 3% and I was responsible for the other 97%.  When you’re talking about surgery, this meant I owed close to $20,000 and Aetna paid a few hundred.  When I looked, in a panic, at my explanation of benefits, it said the hospital I went to was out of network and the provider could balance bill.  Balance billing is this awful concept where the hospital can bill you whatever the insurance company doesn’t cover.  Consequently, it also means you have no out-of-pocket max.  The hospital can continue to balance bill you until you are living in a card board box. I found out later "out of network," actually meant the hospital didn't accept the plan I had at all. To some extent this was semantics. Either way I owed the hospital a large amount of money.

Given the information I was provided, this was alarming for two reasons 1) I wasn’t supposed to have networks and 2) I went to the largest hospital in the state.  If they weren’t covered, who was?  I promptly called Aetna and asked them what was going on.  I was told the claim was correct and I would be responsible for the amount listed in my bill - 20K.  Now if we remember the whole picture of what was going on, my second surgery was when they took the screws out.  I was quite far from being healed and I knew I had some major costs coming my way, including my first MRI.  Fun fact - an MRI will cost about $3,000 to $5,000.  My first MRI was much closer to the $5,000 mark. 

I emailed my employer in hysterics and used this line verbatim “I do not want to have to chose between my employment and being able to walk.”   They promptly responded, said this wasn’t okay, and they would make sure it was fixed.  They connected me with their rep at the third party benefits administrator and they started to look into what was happening.  Over the next month or so, I called Aetna, every Monday at 11 am, with the benefits rep, to ask them what was going on.  After hearing “yes, this is correct,” “no, this can’t be right,” “no, this isn’t right,” “yes it is,” Aetna finally decided, after reprocessing my claims a few times, the hospital was not covered under my new plan and I was in fact responsible for the 20K bill and all the bills which would follow.  

Shortly after I started to receive bills.  Again, unless you are mega wealthy, who can afford a 20K hospital bill?  Thankfully,  a few of my best/worst qualities came in super handy in this situation.  Those being: I am crazy stubborn, I don’t like being told I’m wrong, and I really don’t like injustice in any form.  At this point, I knew not only were the bills in question not covered, but my plan did not cover a single hospital in Vermont.  Let’s think about this: The plan I was put on did not cover a single hospital in the state I live in.  What this meant is I could not afford healthcare.  I could not afford healthcare and I couldn’t walk.  Between this and arguing with surgeons about how I wasn’t getting better, I wasn’t in a good place.

Despite my burning desire to just ignore the situation and hope it would go away and the ongoing feeling this was really wrong and I should be focusing on getting better and not on the unethical practices of a mega-corporation looking to profit off of my suffering - my desire to not ruin my credit or go broke won.  I continued to work with my benefits vendor and hound Aetna about why this was allowed to happen.  Many times I uttered phrases like “You put me on a plan which does not cover any hospitals in the state I live in.  I cannot get the care I need.  How is this okay?”  The customer service reps varied in their responses.  Sometimes they stuck to the company line and would say “Your plan provides you with choices.”  Sometimes I could tell they knew what was going on was wrong and they would just say “I don’t know.”  

My benefits vendor continued to advocate on my behalf.  About three months later, I got an email from them saying Aetna had agreed to put me back on my original plan and re-process all the claims where I owed 97%.  My response was “this is fantastic!” and “did they acknowledge what they did was wrong?”  Although Aetna did not do so, the benefits vendor reminded me their decision was basically the same thing.   

What came next was Aetna’s really poor attempt at reprocessing all my claims from the period of time where I was on the awful plan.  At first they just took all the claims and plopped them in the out-of-network provider status, which meant I owed a similar amount of money.  I had to call them and prove the hospital was in fact in-network and they needed to put them in the correct category.  Here’s a fun fact: if your plan has networks you will have different deductibles and out of pocket limits for each.  In my case, my deductible for an out-of-network provider was $4,000 and my out of pocket max was $8,000, which meant I still “owed” a ton of money between in and out-of-network providers.  

During Aetna’s second attempt they got it mostly right.  Mostly being about 80%.  The other 20% I needed to call them, go claim by claim and show them examples of other claims where they categorized the same provider as in-network.  I had to do this because of a stark reality, which is truly awful - insurance company reps think you don’t know anything about insurance.  They will do their best to defend the claim and to make it look like you just don’t understand.   They will go as far as to say “this other really big bill was covered and if we did this in error, we’ll take it back.  Maybe you should just pay the $400 x-ray.”  Thus, here’s a gimpy tip: be ready for a fight.  Have all your ducks in a row and know health insurance is not that complicated.  Just because they try to tell you you are wrong, doesn’t mean it’s true.  Most likely it isn’t.  I’m pretty sure I haven’t been wrong yet. 

By the time Aetna managed to reprocess my claims for the second time I was recovering from my third surgery i.e. it was August.  After four months of arguing with Aetna, I had had enough - except the insurance nightmare wasn’t finished with me.  The hospital requires you pay your portion of a surgery before you have the surgery.  Per my plan, this meant I chucked out $2,000. Potentially the worst part of this whole situation was the bills in question were not only in-network but they put me over my out of pocket max for the year.  What this meant is, not only did I not owe the hospital nearly 20K, but they in fact owed me $1,100.  At this point, I had had a few conversations with the billing department at the hospital because Aetna had finally processed my claims correctly and it was clear the hospital owed me money.  

After four or five phone calls over two months which always ended with “we are waiting on Aetna, just give it more time.” I started to become impatient.  When I become impatient, I become less nice.  My tone with the billing department changed from friendly inquiry to “figure it out" and "where’s my money?”  After the seventh or eighth phone call, I was passed to a supervisor who explained to me “your plan doesn’t cover this hospital.  Aetna shouldn’t have paid us.”  The fireballs coming out of my eyes must have been pretty epic.  I promptly explained this wasn’t the case and they must have the wrong ID card on file, which was infuriating because I can’t tell you how many times I had to verify my insurance.  Remember - the hospital wants to be paid. 

After having a three way call with Aetna and the billing department, where Aetna told the hospital they were wrong - I promptly sent them a new ID card - again.  At this point it was November, which was seven months of arguing with Aetna or the billing department.  In very not nice words, I told the supervisor I wanted my money back now and was done with dealing with them.  They realized they had royally messed up, said they were sorry and refunded my money within a few days.  

Since then things have been okay.  They have been okay because I feel like I can argue with Aetna and it’ll work out.  Is this desirable - absolutely not.  I would like it if they could do their job and it didn’t look like I owed thousands of dollars every few months.  Perhaps this is asking too much.  There have been little blips.  There was the time about two months ago when the hospital called to tell me Aetna told them I didn’t have insurance for a six month period of time and they were going to take back all the payments they had made during that time - meaning I would need to pay.  A 45 minute three way call later, we had the situation figured out, since I had insurance the whole time.  Every once in a while a claim will be processed incorrectly and we’ll have the same “no, you’re wrong and fix it” conversation I’ve had so many times before.  

There was the one time an independent customer satisfaction firm called me to ask about what I thought about Aetna.  After my solid 30 minute rant, the person thanked me for sharing my story and said she wished more people would speak up.  She sounded sincere and I’m not sure she knew what she was getting into when she dialed my number.

If I may offer some gimpy advice, here are my tidbits of wisdom when it comes to being gimpy and paying for it:

1. Know the details of your plan inside and out.  In theory, I could’ve prevented some of this if I had checked if the hospital accepted my plan.

2. Look at your bills.  Look at your bills maybe 10 times before you pay them.  I can’t tell you how many times there were mistakes made either by Aetna or the hospital.  My favorite was when the hospital double billed Aetna and they paid it.  It felt like the monsters screwing one another over and I just got to sit by and giggle.  

3. Don’t give up.  Insurance plans are not that complicated and if you think something is wrong - it probably is.  Keep calling until you either get the answer you want or they can super clearly explain why you are wrong.

4. Don’t pay a bill if there is an issue.  Getting money back from a hospital is a nightmare and in general, they understand if a claim is in process.  

Lastly, we need to do better.  I am compensated quite well, I don’t have kids, my partner works, I have limited debt, and I had to face the harsh reality I might not be able to afford to get better.  In so many ways I am privileged when it comes to my healthcare and there are millions of people who don’t have these same privileges.   If this was my experience, I can only imagine what others have had to deal with and it’s not okay.   To all the people who spout off about how single payer isn’t okay and access to healthcare is fine the way it is - please tell me how what I experienced was okay? because I don’t see it and I know I’m not alone. 

#insurance #health insurance #coruption #speak up

[vthiker09]

A Picture Worth A Thousand Words

In early February it was diagnostics day.  After a failed attempt to schedule two tests in Vermont within a reasonable period of time, I traveled to NH to have the tests completed.  My new surgeon had ordered an EMG to determine where my nerve was impinged and an MRI to see a more detailed image of the soft tissue in my ankle.

The EMG won for the most unpleasant test I’ve had.  It turns out the way they determine if a nerve is damaged is to stimulate all your nerves in the area they are testing.  Thus, they sent small shocks through my leg and increased the intensity throughout the test.  After the shocks, came the needles.  The small needles were inserted into my muscles and the machine made all sorts of funky noises is an attempt to see if my muscles were functioning normally.  Your nerves are connected to how well your muscles function.  People with nerve damage will often experience muscle weakness.  Thus, the test looks at both areas of functionality. Unpleasant is a nice way of putting how I feel about this test.  Just know if your doctor ever murmurs the words “EMG,” it will hurt and you to will have unpleasant feelings.  The MRI was your standard MRI. You lie in a tube, it sounds like someone is knocking quite loudly, and then you’re done.

About a week later, I got a phone call from the surgeon to discuss my results.  Since it’s a haul for me to go down, this seemed easier.  He shared my nerves looked good, besides a small area of nerve damage by my incision from the previous surgeries.  This is to be expected.  This ruled out any relationship between the pain and lack of function I was experiencing in my ankle and my mysterious back problems my previous medical providers had spent so much time focusing on.  He quickly moved on to my MRI.  He said my MRI basically backed up what he had seen on my x-rays - my deltoid ligament was badly damaged, the space between my tibia and tallus i.e. medial clear space was too wide, and there was a bone spur in my ankle joint which was causing an unusual amount of tissue irritation.   He said the way to fix these issues was surgery, which I already knew was coming.  He tacked on these gems 1) If you don’t have this surgery you are guaranteed arthritis in five years or less and 2) I wouldn’t wait for more than six to months to have this done.

Remember - this was the ankle a whole team of medical providers had been telling me just weeks before was 100% a-okay and just give it more time.  I felt a strong sense of relief I had found a medical provider who genuinely seemed to understand what was going on and had a game plan to address the problems he found. At the same time, I couldn’t help but feel quite a bit of anger and resentment towards my previous medical providers.  For 18 months I had gone to them, trusting they had my best interests in mind, and all along I was working with a limb which wasn’t functional.  Not only was it not functional, but if I didn’t do something about it, it would have become much worse.  I have all sorts of ideas around why this happened.  It ranges from a genuine lack of care for patients, to a lack of expertise, to gendered health care.  I have got to a place though where although I’m not okay with what happened, I acknowledge I may never really know why it happened.  This is hard to sit with.  The last 18 months have been hugely challenging and when it boils down to it, it could have been avoided.

Since I had already processed the idea of a fourth surgery during my previous appointment with the surgeon, it didn’t really phase me.  I said okay, asked a pile of questions, and he let me know I would hear from the surgical scheduler in the coming days.  I heard from this person and was put on the surgical docket for 4/20.  My friends made the appropriate number of jokes about the fact I was to go under the knife on national pot smoking day and then it was time to wait.  I was a little annoyed I had to wait nearly a month and a half for my date.  I have been told this is actually really fast.  From my perspective, I had really been waiting for 18 months and this wasn’t fast at all.  I understood though the new surgeon was not responsible for my previous medical missteps and a month and a half of waiting wasn’t going to kill me.

The six weeks which followed weren’t super fun.  All the restrictions I was given still applied and I felt like I was half living until I could have surgery and hopefully actually recover and get back to life per my normal.  I continued to ride my bike, did a massive pile of ab exercises, bought a treadmill so I could abide by the “you can walk but I’d prefer it be on a treadmill” directive, and on a few occasions was a bad gimpy kid and went for a flat 1.5-mile long walk outside.  I started to get quite grumpy every time I saw someone running, although I acknowledged it wasn’t their fault they were able-bodied and perhaps I shouldn’t harbor anger towards them.  A few weeks before the surgery I started to become more restless.  I referred to the exercise I could do as “exercise prison” and felt as though I had quite enough of my limited mobility.  The week before surgery, I took off from work and did a pile of enjoyable activities I knew I wouldn’t be able to do for awhile.  Mainly rooted in brunch dates, fun cocktails, beer, and beauty care, I had quite a pleasant last week.   

On 4/19, I got a call from the surgical scheduler and was told I needed to be at the hospital at 8:30am.  Mike and I went down the night before, stayed in a swanky hotel, we ordered pretty okay Italian food, and went to bed.  I’m pretty sure I slept maybe three hours.  There’s a lot to think about the night before you undergo a three-hour surgery.  Most of it was rooted in “I really hope this actually works” and “oh man, I hate crutches.” 

The next morning I walked into to the hospital knowing I wasn’t going to walk out.  If you’ve never had the pleasure of this experience, let me share - it’s not fun.  I’m not sure there is anything I’ve experienced which is quite like it.  It’s not anything like going to the dentist, nor the eye doctor.  The lady doctor is much more pleasant and even the DMV isn’t so bad in comparison.  It feels much like an unpleasant blind leap of faith.  The unpleasant part is knowing you won’t be able to walk for 6-8 weeks or dive and it will hurt - a lot.  It’s also unpleasant because it feels like starting over.  I’ve done this process three times at this point and although it’s reassuring to know what to expect, it’s unpleasant to know what to expect.  The faith comes in regards to how successful the surgery will be.  I hope this time the surgeon really listened, found everything which was wrong, and actually fixed it.  I have faith this is true, but I won’t actually know for many more months. 

After walking in, it was the same process - a bazillion questions, a hospital gown, a pile of drugs along with an equal pile of numbing agents, a three-hour nap, and then it was over.  I did manage to wake up, think a lamp was a clock, it was the next day, and get quite upset with the surgical team they had kept me overnight. Besides looking quite confused about what I was talking about, I’m sure they just chalked it up to another kid on a pile of drugs. Shortly after I was wheeled into post-op I was given a set of x-rays.  This was the first time I was given pre and post-op x-rays, which is a behavior I wish my previous medical providers would adopt.  Perhaps I’ll plop this in the next questionnaire they send me, which I know they probably will never read.

Here is my pre-op x-ray:

You can see the surgeon’s hand because he is stressing my ankle joint.  You can also see all the pieces which aren’t right.  See the space on the right between the pointy end of my tibia and my tallus?  Well, this space should be the width of a dime.  Mine is more like the width of a cell phone i.e. not good.  Now, look at my fibula (the skinny bone on the left).  See how there is a space on the outside of my tibia where it looks like maybe my fibula should sit in the groove?  Well, it should and it’s not. Basically, the space between my two leg bones was too wide and my cell phone space was a result of my failed deltoid ligament. 

When I look at this x-ray, I have a lot of feelings.  My first reaction is “wow, this doesn’t look right.”  After this captain obvious sentiment, my brain moves more into not feeling good about this x-ray.  This is the ankle joint I was told was good to go.  This is the ankle joint I walked on for about a year.  This is the ankle joint I missed work for, spent a ton of money on, went to nearly fifty PT appointments for - all in an attempt to rehab.  This is an ankle joint which was never going to function normally.  This ankle joint was going to rob me of enjoying so many aspects of my life.  This ankle joint was only to get worse no matter how hard I tried to make it better.  This one x-ray is a representation of 18 months of pain and struggle and sometimes I have a hard time looking at it and it makes me really sad.

This is my post-op x-ray:

The black strips are anchors.  You can see a few lines in between the two anchors on the outside of my tibia and fibula.  There are synthetic wires between the anchors which are holding my bones together.  The anchor higher up on my tibia is holding my new deltoid in place.  There are few other anchors you can’t see.  Oh, I should probably mention this - I have a cadaver ligament! Someone donated their body parts and now I have a functional ligament.  I have always been a fan of the organ donor program and this only solidifies my fuzzy feelings toward this program.  Additionally, my odd obsession with zombie everything thoroughly enjoys the idea I got a freeze-dried body part, devoid of DNA, which comes back to life as my body adopts it - super cool, right! 

In addition, to ogling the details of my surgery, I have feelings about this x-ray.  My captain obvious sentiment is “wow, this looks much better!.”  You can see the space between my tibia and tallus is about the width of a dime, the space around my ankle joint and leg bones is uniform, and my fibula is where it should be.  This x-ray brings me hope.  It makes me want to try one last time, super hard, to get this right and be done with this whole process.  It makes me feel like I have been given a joint which will function and now it’s up to me to get back to the activities I truly miss.  This is an ankle joint which can hike half dome.  This is an ankle joint that can travel the world, romp through the woods, and drink overly complicated craft beers.  This ankle will function and will give me my life back and all the activities I truly miss.

As I write this, my leg it above my heart and I can’t stand on it.  I have a long way to go and it’s okay.  I have faith this will be the last time I need to do this.

#surgery #recovery #gimpy #hope

[vthiker09]

You look great!

There are a few areas of being gimpy I’d like to talk more about.  The first of these is managing your overall health, while being broken.

The pressure on women to look a certain way is not new to anyone.  Any woman can speak for days about the messages they received as a child and as an adult from their friends, family, the media, online, etc. about how they can never be thin enough.  If you then ask an active person about the messages they receive about fitness, you’ll get an equally skewed perception of how being thin isn’t good enough.  You have to be able to do more, lift more, run further, run faster, hike longer, and most importantly - win.

Growing up, I was encouraged to lose weight from a very young age.  When I was five, my much older siblings would take turns watching me run around the garden in my back yard as part of my daily exercise routine.  When I was seven or eight, my mom encouraged me to participate in a weight watchers plan with her.  When I look at pictures of myself as a child, I wasn’t actually overweight.  What was true though was I lived in a house of fitness fanatics and my more normal frame wasn’t able to run further or faster and I didn’t win very often.

As I got older, I was forced to play sports.  At the time, I had little to no interest in copying the path my siblings had forged before me, which was full of insane workout routines and consequently - a similar pile of medical woes.  My hockey player parent wouldn’t accept my desire to not “be the best,” without a solid fight.  Thus, my middle and high school years were full of sports.  Every single day was about whatever sport was in season and how to be better than other people at it.  By the end of high school, I had run x-country and x-country skied for six years, played lacrosse for three years, and ran track for two years.

Saying “I played sports” doesn’t really paint the appropriate picture.  My family didn’t “play sports,” we obsessed about them and didn’t accept anything short of perfection.  What this meant was every single minute of those years revolved around training for said sports and managing my diet.  I found out later in life I have polycystic ovarian syndrome.   A fancy term for cysts grown on my ovaries, my friendly syndrome mainly effects my ability to have children.  Paired with fertility issues, however, is a solid ability to gain weight.  People with this syndrome often are obese and have an intense biological ability to pile on belly fat.  When I found out I had this syndrome, twenty years of diets and exercise all made sense. I never got six pack abs and I really should’ve.  My reality is I am one of few people who actually has a reason why being crazy fit is hard.  Regardless of my reality, it never stopped me from trying.

As I got older, the messages I heard from my family started to mix with society’s general messages about what it meant to be pretty.  When crazy fitness met stick thin pretty people, it didn’t end well for me.  It started with skipping lunch.  I would take the brown bag lunch my mom had prepared and promptly throw it in the lunchroom garbage.  There was a sense of pride when I did this, because I could run six miles and not eat - or at least this is what 14 year old Erin thought. Skipping lunch morphed into skipping meals and only eating very small amounts, which morphed into being really hungry.  There was one day when I had had enough and ended up eating a large meal.  The guilt I felt around doing so was too much and I ended up going to the bathroom to rid myself of my wrong doing.

The first time I purged, I was 14 or 15 years old.  Without going into all the details, this turned in a decade long struggle with bulimia and orthorexia.  Today, I am nine years clean from most of these destructive behaviors.

Around the age of 25 I started to become healthy.  At the same time, I had such a distorted idea of nutrition, how to exercise, and my body in general, I had no idea how to manage myself.  Like many people recovering from an eating disorder, I ended up gaining too much weight.  Over a five year period of time, I managed to pack on nearly 100 pounds.  Granted my starting point was a bad place, but the end point wasn’t good either.  At the age of 30 I found myself being told by doctors that “I needed to drop a few pounds.”

It took me quite a while to acknowledge they weren’t evil people trying to ruin all the hard work I had done to heal.  I then took on a new task - how to be healthy without being sick.  The turning point for me was when I tried to hike a pretty small mountain and I had to turn back.  I had to turn back because I was too out of shape to make it up the slope.  I was disappointed with myself and decided I would never let it happen again.  There wouldn’t be another day where I said “I can’t.”

The following hiking season I hiked thirty mountains, the season after that I hike nearly seventy, the season after that I hiked 40 and broke my leg.  When I hurt myself, I was in the middle of becoming myself again.  After many years I had realized working out was really important to me and had little to do with my parents forcing me to play sports.  When I hurt myself, I had lost about 50 of the 100 pounds I had gained over the years and was starting to feel more like myself - the person who was hiked all the mountains, had a great time doing it, and really likes cheese pizza.  

Instantly, I went from an active woman on a mission to someone who couldn’t stand on their leg and spent 24/7 on the couch. I quickly realized I couldn’t keep eating the same amount if I didn’t want to gain weight.  Thankfully, at this point, I am a professional dieter.  I also over the years have become one of millions of people who has fuzzy feelings towards clean eating.  I get a CSA weekly, 85% of of all the other food I eat comes from my local co-op, I’ve been a vegetarian for 17 years, I read food labels often, and I won’t purchase food if it has more than 5g of added sugar and if I can’t pronounce all the ingredients.  My clean eating diet, which is more of a lifestyle choice, had aided me in shredding quite a few pounds.  Clearly, with a few modifications, it would get me through my gimpy diet.

Over those months, I mostly stopped eating cheese and bread.  I limited my pasta intake and because of the medicine I was taking, I stopped drinking.  I ate piles of nuts, dried fruit, veggies, eggs, yogurt, granola, and fruit.  By the end, I was pretty sure I was going to turn into a granola bar.  My gimpy kid diet not only kept me from gaining more weight, but I actually ended up dropping another 15 to 20 pounds.

It wasn’t all my gimpy kid diet though.  The first time they took the cast off my leg after three weeks of sitting on the couch, I nearly cried.  The calf muscle I had worked really stinking hard on was basically the size of my arm.  Over the next year I would learn what the term “deconditioning” meant.  Turns out when you sit on the couch for a really long time, it doesn’t just effect your leg.  My whole body had basically started to fall apart.  Although I was the thinnest I had been in nearly ten years, I wasn’t healthy.  My core couldn’t support my spine, my legs couldn’t really support anything, and my arms were just flabby. 

At this point, I felt really bad about how I looked and all of a sudden something odd started to happen.  People around me were starting to say things like “you look great!”  There was one day in particular when someone had spent a solid twenty minutes grilling me about how I managed to “look so great” and it really bothered me.  I promptly went home and called my friend in hysterics and explained what had happened.  It bothered me because although I looked “great,” I felt awful.  I was weak, I couldn’t really walk, and everything hurt.

Here’s a gimpy reality: crutches suck and they hurt.   Your body is not meant to move that way and if you use them for an extended period of time you will end up with one side of your body which is pretty jacked and the other side of your body will be useless. When your body strength is uneven, it will cause a whole host of other problems because your friendly brain will learn it’s easier to complete tasks on one side of your body and you’ll do this, which will only make the problem worse. 

It took me about a year to realize although “I looked great!” I had a lot of work to do to get back to the mountains.  I ended up buying a small gym’s worth of exercise equipment and although I can’t go for a walk, I can do two hours worth of other exercises.  I have continued my clean eating habits and in general don’t drink as much.  Turns out when you don’t really drink for a year you lose the ability to pack in six or seven beers in a night.

Being gimpy tested my notions of health, fitness, and body image in ways I never thought it would.  It was probably the area of my life most impacted by my injury.  

Through all of this I would offer the following:

1. To non-gimpy people: don’t tell a person who is hurt they look great.  It doesn’t even make sense.  If someone can’t walk, can’t do many basic tasks, and can’t participate in the activities which make them happy - they don’t look great.  They probably look really sad and are struggling to get through the day.  You wouldn’t tell someone with cancer who has lost weight because of chemo they look great, would you?  Of course not, because their weight loss is a result of something really awful and they are sick.  Consequently, it’s the same for broken people.  Their weight loss is a result of something awful and it’s not really “weight loss.”  It’s muscle loss and it sucks.

2. To gimpy people: Even if you don’t have a twenty year history of disordered eating, being gimpy blows if you like to move.  It will impact your body in ways you won’t like and on top of healing, it will take time and work to get back into whatever “good shape” means to you.  No one will tell you this though.  Your medical providers will think you’ll magically hike K2 only weeks after not standing on your leg for three months.  This isn’t true.  At the same time - it’s not your fault and it’s okay.  Be patient and with time, you’ll be back at it.

#eating disroders #eating disoder recovery #injury #health #healing

[vthiker09]

My Continued Nightmare

For some silly reason, my insurance doesn’t allow me to see two specialists in the same day.  Thus, I was going to make the trek to NH on a Thursday to see the ankle surgeon and the following Monday to see the spine surgeon.  On February 15th, I made the three hour drive to see the new ankle surgeon.  I had told my PT a few days before I was more interested to see the spine surgeon than the ankle surgeon.  I said this because all the providers I was working with had thoroughly convinced me my ankle was fine and my back was to blame.  

They were all wrong.

I walked into this appointment insanely nervous because I didn’t know what to expect.  All of my providers were saying my ankle was fine.  At the same time, even though my will wanted to tell me I could get through this, there was a part of me which knew I couldn’t.  I hoped my doubt was unfounded and this surgeon would join the orchestra of people saying: “you’re fine!.”   I filled out the standard new patient forms, waited for my name to be called, and walked into the all too familiar exam room.   A friendly medical assistant struggled though a set of questions rooted in the fact I don’t live in NH along with me saying: “I barely know where I am” and “no, I don’t have a pharmacy here.”   After commenting on the extensive nature of my medical history, he asked me a few questions about my current symptoms and told me the surgeon would be in soon.

A few minutes later the surgeon, the same surgeon my aunt had shared so many accolades for, came in and introduced himself.  He promptly, like surgeons do, hopped into the meat of the conversation.  He pulled up a few x-rays from the previous hospital and said “the space between your tibia and talus is too wide.  I mean we’re only talking about a few millimeters, but it can make a big difference.”  He explained excess space between the bones can cause excessive movement in the joint, which can lead to ligaments being pinched and a fast track to joint degeneration and cartilage damage.  He then explained this was a poor result of the first surgery I had - 18 months ago.  

When I used to be a service provider within the non-profit sector, I delivered bad news quite often.  I think the worst news I had to deliver over those ten years, was when I worked with a homeless service provider.  I worked specifically to prevent people from becoming homeless.  There were situations though, where this couldn’t happen and I would be the last person someone would speak with before they were on the streets.  There is a trait all service providers have, where they can tell someone something they perceive as awful, provide some level of support, and then move on with their day.  If they didn’t have this skill, there’s no way they would consistently be able to tell people awful news and still claim to be content with their profession.  To be fair, the awful news is usually paired with a similar amount of good news.  For every household I said “no” to, there were an equal number of “yes’s.”  It takes a fair amount of self-awareness though to not focus on the bad news.  It’s much harder to watch someone struggle than to see someone succeed.  

Although medical professionals and non-profit workers are quite different in many ways, this is a similarity between the two professions - they both deliver really bad news.   At this moment, I realized the roles had changed.  I was on the receiving end of really bad news and the surgeon was the person who was delivering it.  I can’t imagine what the look on my face was as I began to digest the idea the surgery I had had 18 months ago wasn’t successful and my initial injury was still plaguing my joint. In a serious effort to hold back tears, I began to ask questions about how this could have happen, how frequently it happened, and how it could be fixed.  The surgeon answered all of my questions and reminded me although there was an issue, there was still a ways to go before any decisions could be made about how to treat it.  He said he wanted to do his own set of weight bearing x-rays and a stress test to assess my medial ankle ligaments.

The x-ray tech took the weight bearing x-rays, the surgeon stressed my ankle joint, said “sorry, I know that must have hurt,” and then I was brought back into the exam room.  He came back into the room, showed me my x-rays and began to discuss what he saw.  This was the first time I saw my left ankle next to my right ankle.  This was also the first time I noticed how different the two look.  My comment was “they look quite different.” He reiterated my tibia was not where it should be and then showed me my stress x-ray.  His exact words were: “This is bad.  Your deltoid isn’t functioning at all.”

At this point, I think I was in full crisis mode.  I asked some disjointed questions and mostly focused on how this had ruined the last year and half of my life and how in world was it not fixed.  The surgeon tried his best to acknowledge I was not happy and to focus on his roll, which was to evaluate me medically.  He let me know the doctor I had been scheduled to see for my spine wasn’t the right doctor, told me he would just show my MRI to their spine surgeon, and that his initial thoughts were he wanted to get an EMG to see what was causing my nerve pain and another MRI of my ankle to see what had changed since my last one.  Yup - that’s right, apparently the way in which my ankle joint has been moving since my last MRI is significant enough more damage could have occurred.

The surgeon told me he would call once he had a chance to talk to the back surgeon and would solidify the plan.  I walked out, cancelled my Monday appointment with the non-spine doctor, and walked to my car.  Every emotion I had somewhat successfully tried to hold in while in my appointment proceeded to poor out all at once.  You know those times when you cry so hard it’s hard to breath?  Well, this was one of those times.  The only feeling I had at this point was extreme anger.  I was angry at all the previous providers I have seen, who told me I was fine, when I am clearly not.  I tried to call Mike, who didn’t answer. I tried to call my parents, who didn’t answer.  I thought about calling a few friends and decided against it.  

I called my aunt who I had told I was going to go see after this appointment.  I told her I was on my way.  I proceeded to get very lost, have my GPS fail, and break all sorts of traffic rules trying to figure out where I was.  Mike called me back, he said something I thought was mean, I called him an asshole, hung up on him while in hysterics, and proceeded to ignore five or six of his calls before giving in and talking to him.  I went to my aunt’s house, cried for a few more hours, and then got into my car to go home.  My parents called me back, I cried some more, they told me this wasn’t bad and it sounded like someone finally was going to help me, I told them “how in the world is this not bad news?!?” and then cried on and off for the three hours back to Vermont.  

I got home and emailed my PT to tell them what had happened.  As part of my appointment, the surgeon told me to stop doing an awful lot.  My ankle joint is unstable and certain activities could make my situation worse.  All of sudden I went from “you’re fine!” to “no running, hiking, snowshoeing, squats, calf raises, ankle stretches, uneven ground, anything on a wobble board, and you can walk, although I’d prefer on a treadmill.”  I communicated this to my PT and asked to focus on what I could do when I saw them a few days later.  I emailed a select group of my friends to tell them what had happened.  At this point I had told four people the story and I couldn’t emotionally deal with telling anyone else.  It seemed like the emotionally safest way to let folks know I was having a hard time without having to tell the same story over and over.  

Then, I went to bed.

I woke up the next day and I was just sad.  The idea of just being sad is something I’ve only experienced a few times in my life.  It’s this overwhelming feeling something isn’t right and there isn’t a whole lot you can do to fix it.  For a “fix-it” person like me, often times bad situations aren’t so bad if there’s something I can do to make them better.  When you take the “fix” out of the situation, I’m left with feeling something is wrong.  This also goes back to the concept of will I discussed earlier.  You can’t will a bone to move and you can’t will a ruptured ligament to heal after it’s had 18 months to do so.  Pair this with what I think is a quite strong will to heal and more importantly - hike again and my reality makes me really sad. 

The surgeon called me later in the day and said he spoke with the back surgeon.  Just like everyone else, the back surgeon said my back issues aren’t significant enough to cause the symptoms I am experiencing and there isn’t a reason to schedule a visit.   I was thankful the ankle surgeon a) actually called me back when he said he would and b) actually talked to another provider in the same practice.  These are behaviors I have yet to see at the previous hospital I received services at. He said he wanted to stick with the same plan we discussed the day before: an EMG to figure out what’s wrong with my nerves and an MRI to see what else is going on with my ankle.

The last week has been odd.  I went to PT on Monday and it was hard.  Instead of talking about what I needed to do to continue to rehab, we talked about what I could do given my limitations, to kind of stay in shape, while I wait for next steps.  It was also the last time I would see my PT until, I most likely, go through a fourth surgery.  Besides the fact I like this person as a human being, they represented healing to me.  You don’t go to PT because something is irreparable.  You go to PT because something can be fixed or improve.  When the fix says there’s no point in coming and you should save your visits until you are actually fixed by the surgeon, it’s hard to hear.   She did give me a whole list of exercises I could do and said I could bike until my heart’s content.

The next day, I modified my exercise choices to focus on my core and the bike.  After a week of this new routine, I feel a little better.  I can still workout and feel like I “worked-out.”  Anyone who likes to exercise will understand what this means.  My ankle also feels much better since I stopped doing everything which was aggravating it.   My back also feels much better, although this had started to happen before I saw the ankle surgeon.  I’m happy my less than significant back issues decided to start to respond to the PT work I’ve been doing.  It’s nice to have a win, although at this point, I don’t trust my body at all.  I’ve also been able to return to my office, mostly thanks to a new office chair.  Whenever I don’t have to work on the couch, I feel better.

All of these “wins” seem minute given my reality, which is I am quite limited in what I’m able to do and I’m just waiting for what I believe will be another surgery, more time on crutches, more time on the couch, and more time away from the mountains.  At the same time, I suppose it’s not really more time away from the mountains.  The problem was there the whole time - it’s just no one had figured it out yet.

After a stupid amount of time spent trying to schedule the two diagnostic tests in Vermont, being told I couldn’t get the nerve test until April, I gave up and scheduled the tests in NH.  I’m going to have them both on Tuesday.  With this, we’re all caught up. Stay tuned to hear the results of my exams along with next steps.

[vthiker09]

My Back?

Will is an interesting quality.  Often mistaken for stubbornness, will allows you to decide something has improved or you are on track to accomplish a certain task.  Will, much like many human emotions, can often times be rooted in nothing more than your desire for a certain result - even if you are ignoring the obvious.  When I look back at my social media posts from a few weeks after my third surgery, I see all of these dramatic posts about how much my injury improved and how I thought this was a turning point for me - finally in the right direction. 

Will takes strength.  Particularly in situations where the desired end result isn’t easy, a person with strong will, will often persevere more often.  Having said this, often in instances where will is confused with stubbornness, a person won’t have the ability to acknowledge they cannot bull their way to their desired result because for whatever reason, there isn’t enough will in the world to reach the goal.

In late September, I was sent back for another round of PT.  This time, I opted to go to the PT practice in the same building as my surgeons.  I had struggled in the past to have any line of communication between the PT’s I saw and the surgeons I was working with.  I thought perhaps if they were in the same building, it would help this problem.  I also thought since this practice was associated with an entire crew of surgeons, they probably knew the scope of good, bad, and awful injuries.    I was paired, yet again, with someone who focused on ankle injuries and worked with folks who were trying to get back to an active lifestyle.  

Although the end result was pretty awful, through no fault of this PT, they were the best PT I’ve worked with.  It was the first PT I worked with who I felt truly understood what I was trying to accomplish and instead of giving me the standard list of exercises everyone gets to rehab an ankle injury, took the time to evaluate where I was at, where I wanted to go, and how to help me get there.  It was also the first time a PT saw me as an entire person vs. a busted ankle.  Once we started to work together, this became an important distinction.  I realized quickly it wasn’t just my ankle which sat on that couch for a year, it was everything.  Every muscle I needed to hike those mountains, had been de-conditioned in the same way my ankle had been and needed some work.

Unlike all my other PT’s, instead of a long list of ankle focused activities, this PT gave me body focused activities with a heavy dollop of ankle work.  Besides being more interesting than the previous regimens I had been given, I felt like I was finally working with someone who cared even slightly as much as I did about helping me get back to the mountains.  Despite what I believed to be better care and my steadfast will to get better, I quickly started to realize something still wasn’t right. Here’s a good gimpy kid tip: hold all your dramatic social media posts for until you start to move.  When it comes to orthopedic surgery, it’s really easy to say “it’s great!” when you are in a walking boot or a brace.  The true test is when your limb has to function on it’s own and move in the ways you want it to move.

Many things hadn’t changed: my range of motion in certain directions was still not functional, I had post-surgery swelling along with continued general swelling, I had continued bruising in areas which were not operated on, and my ankle in general hurt.  To add to my routine list of woes was increased nerve pain.  Now, I had had “nerve pain” the whole time.  What I had now was NERVE PAIN.  I had constant pins and needles, burning, and shooting pain which felt like razor blades in my foot.  To say the least - it was unpleasant.  Joining my nerve pain was what I believed to be ligament pain on the inside of my ankle.  

When I met with the second surgeon, he asked me if the inside of my ankle hurt.  He asked me because my MRI had shown my deltoid ligament was damaged.  Two things: a) yes, you have a deltoid ligament complex in your ankle and b) deltoid ligament ruptures are the actual root cause of a high ankle sprain.  Think of it as one big bad chain of events: first you rupture your deltoid, which allows your ankle joint to move majorly in the wrong direction, your syndesmosis tries to pick up the slack, fails and ruptures, and then your ankle joint moves even more in the wrong direction and breaks your leg.  It was a given my deltoid was hurt.  What wasn’t a given was whether it would heal on it’s own.  In most instances it does and doesn’t require any intervention.

For some reason, on this day, I told the surgeon “no it doesn’t hurt.”  I don’t know why, because it did.  Perhaps in this one moment it didn’t and I was being narrow minded in my response.  For reasons I will describe later, I really wish I had said “yes.”  These reasons started to reveal themselves a few weeks into PT.  The inside of my ankle truly started to hurt.  There was one session with my PT where I said, I think my deltoid isn’t functioning properly.  This was after weeks of me saying “I have some serious nerve pain going on.”  After tugging on my ankle, my PT said “roll over.”  She promptly began to push on my back and asked me if it hurt, which it did.  She explained often times back injuries create symptoms in a person’s leg and/or ankle in the form of nerve pain.  She believed perhaps I had a slipped disc and this was the whole reason I often couldn’t feel my foot.

I was given a set of back stretches, which made it way worse.  In the course of a few days, I went from having no clue my back might be hurt, to being in serious pain.  I emailed my PT saying “it hurts to breath,” she told me to stop doing the back stretches, and we would talk next week.  The following week, she said I should see a back specialist.  Now, at this point I had heard a bunch of bad news.  I was working on three surgeries and had finally began to cope with the fact dashing ER doctor was really wrong and I wasn’t going to be hiking in the spring.  At the same time, my ankle was injured - not my back.  I also, much like most people, have this perception of back issues being much more severe than ankle issues.  Whether this is true, I felt like I went from being sort of busted to being much more hurt. 

At this point I had really bad nerve pain, my ankle still didn’t function in many of the same ways it didn’t function before surgery number three, and now my back wasn’t happy.  To say the least, I wasn’t a happy camper.  Despite my lack of happiness, my will was still strong and if seeing a back specialist was going to make me feel better, than so be it.  I promptly called the spine people, who happen to be right across the hall from my ankle surgeons and made an appointment for a few weeks later. 

I’m not going to spend a lot of time on this because I don’t even believe it deserves the effort it takes to type about it.  In short, my experience with the spine team was awful and I won’t be recommending them to anyone - ever.  Here are the highlights:

1. I met with a provider on January 4th.  They asked me what was worse, my ankle or my back.  I told them this was hard to distinguish between because it was the same ankle I had been struggling with for quite some time and it wasn’t clear to me which pieces were caused by my ankle injury and what was caused by the mysterious back injuries, I didn’t even know I had.  Their response was “Look, I am a spine specialist.  I’m not here to talk about your ankle.”  At this point I almost walked out of the appointment.  It made no sense to me, medically or otherwise, that I couldn’t talk about my ankle injury when my back symptoms were in the same place.  I only have one right ankle.

2. At the end of exam, the recommendation was a cortisone injection. After they spoke with their supervising surgeon, the recommendation was an MRI.  I left not being pleased, got a phone call later that day and scheduled the MRI for January 26th with a follow-up on February 5th.

3. I got the radiology report from my back x-rays.  They didn’t match what I had been told by the spine provider.  I called them to ask “why isn’t this the same information as what you told me two days ago?”  They tried to tell me I was wrong, which I wasn’t and then proceeded to laugh at my questions.  After I hung up, I promptly called saying I never wanted to see this provider again and was told if I didn’t, I would be a new patient and the wait would be months.

4. I called another hospital, they wouldn’t see me until they had my medical records.  I called the hospital I was working with and had my records sent.  They were sent a few months ago and I still haven’t heard from the other hospital. 

5. After an insane amount of nagging from my parents, I saw a chiropractor.  They saw my x-rays and flipped out.  Their exact words were: “I’ve never seen a spine move like this.”  Apparently when I bend backwards, my L5 and S1 come a little too close for comfort.  After three or four appointments, the chiropractor said: “I can’t fix this” and referred me to pain management - who never called.

6. I had the MRI done, requested the films, and figured out pretty quickly I had a few bulging discs and one, in particular, didn’t look good.

7. I went to the February 5th appointment, with the provider I really didn’t care for, and was told what I already knew: I have bulging discs between the L3 and L4 vertebrae and the L4 and L5 vertebrae.  I also have a herniated disc between the L5 and S1 vertebrae, which is pushing on the right side of my nerve root in my spine.  This sort of explains the nerve pain in my right foot - because the disc is pushing on the right side.  The provider again recommended a cortisone injection and then said this gem: “My hope is this will provide you with some relief and you can try harder in PT to push through whatever is going on.”

8.  I got super mad someone had the guts to say I wasn’t trying and promptly called the hospital again thinking maybe I could see someone new faster.  Again, this wasn’t the case.  While all of this was going on, my parents were trying to find another hospital I could go to all together.  At this point, there were just too many missteps, what I perceived as a lack of caring, and I was confident a new set of providers were in order. 

My aunt, little did I know, had been going through a similar nightmare.  After an unsuccessful surgery at Mass General, fifty failed PT visits, and two years of pain, it had been suggested she go to a private practice in southern NH.  She had seen both their hip and ankle surgeons and had nothing but fantastic things to say about them.  Although a haul from my central Vermont location, I was so fed up with the care I was receiving, I was willing to try anything.

I called this practice, gave the receptionist the short (which is really a long) version of what was going on and was told they couldn’t schedule with me until they had my medical records.  Although medical red tape makes me want to scream, I noticed two things: 1. This person was nice to me.  She seemed to care even though she had never met me and it didn’t feel like she was staring at a calendar and blindly trying to put me in a slot.  She listened and treated me like a human.  2. The wait times weren’t something I needed to worry about.  This practice wasn’t booking out several months - they were booking out about a week and a half.  Even after 18 months, I could wait 10 days.

I promptly hopped in my car and drove the hour to get all my medical records.  This required three stops and nearly a hundred dollars to fax/overnight all the information to NH.  I was surprised to see a NH phone number pop up on my phone within an hour of me faxing my paper medical records.  The same pleasant women started with “you poor thing” and then proceeded to schedule me to see their ankle and spine surgeon.

Hold tight to hear all about my first experience with a private practice and what turns out to be some pretty bad news.

[vthiker09]

Round 3

Patience.  Being patient is a skill which has alluded me for most of my life.  I never understood how waiting for something would somehow make it better.  In my mind, the sense of glee or achievement I feel is never related to how long it took to complete the task.  My “get it done yesterday” mentality has served me well for quite a long time.  This might be why I don’t understand patience.  Since I hurt myself, I have heard the phrase “be patient,” more times than I would like to admit.  So many times, in fact, I now anticipate when a medical provider is about to lay a “be patient” line on me and am ready with “I know you are going to tell me to be patient, but….”

There was no part of my recovery which tested my non-existent patience more than between when my first surgeon ordered an MRI for my ankle and when I rolled in for surgery number three.  Here’s why: On May 22nd, I was told I would receive a call to schedule the MRI.  I heard a day or two later the next available slot was on June 14th.  I went on June 14th to have the MRI, without a follow-up appointment scheduled with my first surgeon to get the results.  A few days later, the four-page report was posted to my chart, along with crickets from the surgeon.  I happened to be in NYC, for a work-related trip, when the surgeon finally decided they wanted to discuss my MRI.  After a few missed phone calls and a flight back to Vermont, we spoke on the phone.  He shared he understood how the four-page report spattered with references to degenerated joints, scar tissue, torn tendons/ligaments, dying bone, bone spurs, and narrowing of joint space may sound bad, but in reality, my MRI wasn’t any cause for concern.  Having said this, the radiologist had reason to believe I had ankle instability in the lateral, medial, and syndesmotic areas of my ankle.  That’s quite a few areas of instability in a joint which is three or four inches thick and caused me to have significant doubt about what the surgeon was telling me.

I promptly called two other hospitals to schedule second opinions.  Each of them were booking eight to ten weeks out.  If anyone ever tells you the reason we don’t have universal healthcare in America is because it will cause long wait times, tell them they are full of shit and they should move to Vermont.  The wait times here are ridiculous and it’s because we don’t have enough doctors.  It’s not because we finally acknowledged healthcare is a human right and no one deserves to die because they can’t afford insane healthcare costs, which are rooted in greed.  Okay - rank over.

I never ended up going to the other two hospitals, because despite my first surgeon’s feeling nothing was wrong, he agreed to refer me to his colleague who specializes in chronic ankle instability and how to fix it.  His last words to me were, “ I would be shocked if he said anything other than wait six more months.”  Again, I was told I would get a call a few days later to schedule.  This call came and they tried to schedule me for a month and a half later.  Given my reality was I was in pain every minute of every single day, I couldn’t do many of the activities I enjoy doing, and I had no support at this point to resolve whatever was wrong, I wasn’t going to wait another month and a half to hear: “wait six more months.”  I promptly called the first surgeon and said: “this needs to happen sooner.”  Magically, an appointment opened up three weeks later.

Finally, the day came when I would meet my first surgeon’s colleague.  Just like all the previous appointments, I rolled in anticipating another person who wouldn’t listen to me and would dismiss my struggles as just part of the healing process.  I walked in and we went through the standard set of new patient questions, which I thought was ridiculous since I could hear my first surgeon down the hall, and then we moved to the physical exam.  This is when it became interesting.  The surgeon performed the same 20-second ankle stability test his buddy had done two weeks beforehand and said this: “I don’t even need your MRI!  I can tell just by looking at you and moving your ankle that it’s quite unstable.” 

My first appointment with the second surgeon was on July 18th.  Thus, It took me two months to hear “I didn’t need the test you just waited two months for and your first surgeon was wrong.  Your ankle is chronically unstable and you have peroneal tendonitis”  I can’t possibly explain the complexity of emotions I felt at this moment.  After seven months of being told “nothing is wrong!,” part of me felt extreme relief someone a) believed I was actually struggling and b) knew what was wrong.  At the same time, there was a large part of me who felt very angry at the first surgeon.  That doctor had met with me almost ten times and had heard me explain the same struggles over and over and over.  This surgeon had met with me for ten minutes and seemed to know exactly what was wrong.  Why did I need to wait seven months to get to this point?  and what the fuck was the first surgeon thinking when he said, “I would be shocked if my colleague told you anything else than wait six more months.” 

Also, I was right.  I was 100% right.  Remember is my last blog post how I wrote about my Google obsession and how I was convinced my ankle was chronically unstable and I had peroneal tendonitis?  Yeah - about that: I was right.  I too didn’t need the MRI- I didn’t even need to go to medical school.  All I needed was to experience all the pain I felt every single day and the internet.  It’s amazing what you can figure out when a) it’s your body b) you actually pay attention and c) you can read.

As this series of emotions flooded my brain, I also tried to pay attention to the next statement out of the new surgeon’s mouth “The only way to fix this, is to operate.”  The next ten minutes comprised of me asking as many questions as I could come up with about what “lateral ankle ligament reconstruction” was and just like that - I was signing a new set of surgical releases.  I walked out of the office, to my car, and promptly burst into tears.  Some of the tears were tears of relief because maybe I would actually feel better.  Part of them were caused by extreme anger towards my first surgeon and some of them were just because I was tired of being hurt.

My co-worker, who is really more one of my best friends, was visiting me during this week.  I called her to tell her I needed to go get a pre-surgical physical and it would take a little longer to get to her.  I went to the other doctor’s office and I realized I was in a really bad mood.  It didn’t get much better when the nurse said: “wow, this is a big surgery” when she looked at the name of the procedure I would undergo three weeks later.  I then really realized I was in a bad mood when the poor doctor tried to talk to me and followed up with “did I do something wrong?”   I promptly explained it wasn’t their fault, got my five-minute physical to confirm I could undergo surgery and not die and went to pick up my friend.

There are many reasons I call this particular co-worker one of my best friends.  One of them is she is one of the few people in the world who can tell me I’m being stupid and I will actually listen.  It takes a long time for someone in my life to get to a place where I respect them enough to listen when they tell me I’m wrong.  Perhaps it’s because of her intelligence and wisdom or perhaps it’s a testament to how stubborn I can actually be.  I would like to think I’m a good judge of character and she’s just that great - this way we both win. 

Another reason I really like this person is because I can complain until the cows come home and their cows come home and maybe the farmer comes home to and she will listen the whole time.  Not only will she listen, but she’ll care - the whole time.  It’s hard to find people who will do this.  I was lucky she was staying with me and she was the first person I saw after that doctor’s appointment.   I was lucky because I needed someone to feel bad for me, tell me it was going to be okay, tell me it wasn’t the worst thing ever, and give me a swift kick in the ass.  There aren’t many people in the world who can manage to do all of these tasks in the same conversation in an effective manner.  This person can and did.

The swift kick in the ass is something I reflect on almost every single day and is something I am very thankful for.  I don’t quite remember the context of the conversation, but something led to this comment: “Erin, we all know you’re strong.  What’s the point of trying to tough it out anymore? We all get it- you’re tough.   Who are you trying to prove it to anymore?”  What followed was a conversation about self-care and doing a better job post-surgery number three of returning to activity more slowly and just being nicer to myself.  We’ll talk more about how successful I actually was at being kind to myself later and I can say, I have embraced the idea of self-care more than I ever have before and I have this person to mostly thank.

Over the next several weeks, I got ready for what I often think of as the world’s worst vacation.  This surgery would put me back on crutches and back on the couch.  Unlike the first time, however, I had notice.  Thus, I spent the month collecting gimpy kid activities, moving everything in my house down a couple of inches, pulling out the pillow fort, getting the shower stool and cast cover ready, and even though it was the worst thing ever - I even pulled out the sadness sticks.  I tried my very best to have a positive attitude and I totally failed.  I didn’t want to be on crutches again and I didn’t want to have Mike drive me everywhere and I didn’t want to rely on other people for everything.  Knowing I was going back to a situation which had made me truly sad and it had taken almost a year to get back to this point, was not high on my priority list and it made me mad.  Thankfully, I would only be non-weight bearing for two weeks, followed by a month of walking with crutches and the boot, and another few weeks of walking with the boot.  Compared to three months of non-weight bearing, a month of crutch/boot walking, and another few weeks of boot walking - this wasn’t as bad. Having said this, I still wasn’t happy about it.

On August 9th, I had two ligaments on the outside of my ankle reconstructed.  What this meant was they stretched them, drilled tiny holes in my ankle bone, attached the stretched ligaments to the bone with plastic anchors and cleaned off the junk which had been a result of all those previous tears. Additionally, they cleaned what the surgeon later described as “snot” off my peroneal tendons.  This snot develops when a tendon is stressed and overused.  When the snot gets bad enough, it causes tendonitis and it quite painful.  

Just like that, round three was over and it was time for another round of rehab.  It also means we’re almost caught up.   Stay tuned for what post-surgery life entailed and what’s currently happening. 

[vthiker09]

Something is Wrong

After the screws were removed, I found myself in what felt like an odd situation.  I had just had surgery and I didn’t want help rehabbing from it.  At this point I had been in PT for four months.  I had worked with five different PT’s and had done every single thing they had told me to do and from my perspective, it hadn’t worked.  I couldn’t go through a single day without significant discomfort, let alone hike the mountains I missed so badly.  I also felt burnt out.  I believe this is a piece of rehabilitation and being injured people don’t talk about often: rehabilitating an injury is exhausting.  Even for an active person, I felt like PT was work.  It felt like work because it wasn’t exercise for fun.  It was exercise focused on my injury and reminded me every single day I was hurt.  I didn’t want to be hurt anymore and PT was solid proof I was.  Thus, I stopped going and decided maybe I could do this on my own.  Even though I had all sorts of reminders in the form of constant swelling, bruising, lack of range of motion, nerve pain, and a six inch scar with some new stitches in there, I thought I could, in some way, ignore all of this and finally be better.

Even though this would later prove to be truly misguided, I felt free.  The day after the screws were taken out, I went for a four mile long walk with five or six of my closest friends.  It felt normal.  We chatted about normal things.  We laughed and meandered in the park behind my house in the ways we had before I was hurt.  What wasn’t normal was the taring, burning, and throbbing I felt in my leg.  When we got back from the walk I tried to play a game, while sitting in a chair.  I realized while my friend was taking their turn, I was basically in tears.  My freshly operated on limb, despite my desperate need for it be healed, wasn’t.  

Even with my PT dropout status, I kept doing the exercise routine I was given before the screws came out.  I knew the exercises helped, even if I didn’t want to actually go to PT.  Between this and my daily three to four mile walks, I started to notice something I wasn’t happy with: my leg felt worse.  What “worse” meant was my ankle felt like jello and jello is not capable of supporting a person.  In addition to feeling like jello, my ankle also acted like jello.  All of a sudden walking down a sidewalk had become a dangerous activity.  It was dangerous because even a simple stone would cause my ankle to give out and I would roll it - causing stress on tendons I knew were already unhappy.  

My growing concern about my jiggly joint didn’t stop me from trying to pretend things were okay.  A few weeks later I decided to go on an “easy hike.”  Easy to me was six miles on relatively flat ground.  You know what you can’t easily find in the woods?  Even ground.  Thus, even though the hike was flat, it was uneven and my jiggly joint knew it.  About a mile from the car I stepped on a rock and twisted my ankle enough my friends noticed it.  Let’s think about what I just said - I was on flat ground and I stepped on a small rock.  Does this seem like normal ankle behavior? because it didn’t to me.  It was also concerning because this was the limb I was supposed to be taking care of.  Surely twisting it a few more times wasn’t going to aid me in my healing process.

This became habit for me.  I would go on baby hikes, roll my ankle, and then worry about why.  At this point my Googling was at unhealthy levels.  I spent basically every free minute I had scouring the internet looking for any reason why I had a jiggly joint.  My Googling hysteria was a desperate attempt to do anything to help myself.  Remember - I didn’t have any providers in my life other than my surgeon, who I wasn’t sure could help me.  Thus, I was on my own, through my own choices, to figure it out.  After reading hundreds of websites, I decided I had a chronically unstable ankle and peroneal tendinitis.   

Chronic ankle instability is characterized by reoccurring giving way of the ankle joint, particularly in unusual situations.  Usually people who end up with chronic ankle instability have a longish history of ankle injuries and tend to not rehab their ankle injuries correctly.  Sound familiar?  My decades of ankle injuries all of which had zero rehab, all of a sudden made sense.  The culprits when it comes to chronic ankle instability are often your lateral ankle ligaments.  Ligaments can be described as really tough rubber bands.  They provide stability to your joint and help you move.  If it wasn’t for ligaments and tendons, your bones would just fall into a pile of bones because there wouldn’t be anything to support them.  Pretend you have a rubber band you play with everyday.  After years of stretching, the rubber band loses it’s elasticity and becomes overly stretched.  Consequently, if you use your now overly stretched rubber band to hold items together - it won’t do a good job.

Every reasonable brain cell I have believed my rubber bands weren’t working.  Compounding my overly stretchy rubber bands were my friendly peroneal tendons.  These guys are located on the outside of your ankle.  They connect a muscle in your leg to your fifth metatarsal (pinky toe).   If you have some free time someday, google the following phrase: “peroneal tendinitis and chronic ankle instability.”  You’ll get 95,000 results, which all speak to how if your lateral ankle ligaments are too stretchy, it puts more pressure on your peroneal tendons and they will eventually start to fail and join the pain party.  We’ll talk about this later and let me point out something which should be obvious: everything in your body is connected and if one thing begins to fail, it will only be matter of time until something else can’t pick up the slack anymore and will also begin to fail.

I had, at this point, diagnosed myself and was super sure I was right.  All I needed was a surgeon to agree with me and help me.  During my Google hysteria, I saw a few things over and over and over and over:

1. Ankle history is a key piece of diagnosing chronic ankle instability.

2. Chronic ankle instability can be difficult to diagnosis because it doesn’t behave like an acute issue.  It’s not always symptomatic and often times won’t respond to traditional stability tests.

I had an upcoming surgeon appointment and I knew I needed to make a strong case for what I believed was wrong because a) I’m not a doctor and b) in my experience, they don’t respond well when you say “I think it’s x or y.”  Step one of my efforts comprised writing an overly detailed ankle history.  Starting with the first time I majorly hurt my ankle in high school, I detailed every single subsequent time I moderately or majorly hurt my ankle and all the times I did nothing about it.  Three single spaced pages later, I checked off “ankle history.”  I emailed it the surgeon’s nurse and asked her to pass it along in preparation for my appointment.  

Step two is something I’m not proud of.  If you re-read number two above, you see the piece about “chronic ankle instability is not always symptomatic.”  You mix this with my previous statement, a few blogs posts ago, where I spoke about how I needed to make it so obvious to the providers I was working with something was wrong that they couldn’t say anything other than “here’s how we can help” and you get this: I made sure my ankle was symptomatic when I limped into those surgeon appointments.  Granted this didn’t take anything other than going for a walk, I made sure the night before my appointment I went for a four or five mile walk on uneven ground.  Doing this meant I would limp into the appointment with peroneal tendons the size of a small hot dog and lateral ankle ligaments as stretchy as they were going to get.

I limped into the subsequent appointment ready to make my case.  When the surgeon walked in, he told me he had read my history and would like to do a couple of tests.  He did an anterior drawer test, which tests stability of the lateral ankle ligament complex and did a stress test x-ray, also meant to test ankle stability.  My jiggly ankle managed to pass both tests with flying colors - meaning there were no signs of ankle instability.  The surgeon, who could clearly see I was in a bunch of pain and my ankle was not in a good state, admitted he was a little stumped.  His areas of expertise were not chronic ankle issues and although he had run my case by the surgeon who did specialize in this area, it was unclear what was wrong.  At first, his suggestion was to wait a few more months to see if things calmed down.  After an emphatic “no” on my part, we started to discuss an MRI.  

Magnetic resonance imaging uses a set of magnets on steroids to look at soft tissue.  Unlike x-rays, MRI’s can see your friendly tendons and ligaments.  The great thing about MRI’s is they can see EVERYTHING.  This is also the bad thing about MRI’s.  There is a whole bunch of research out there about how you can take twenty people off the street, do an MRI of some part of their body, and identify an issue.  This was a big part of why the surgeon was so reluctant to order an MRI for my ankle.  He had said a few times there was no doubt mine would come back abnormal and at some points he couldn’t even do one because my tissues were so disrupted the images would be distorted in a way they would be useless.  Additionally, when it comes to ankles, the vast majority of issues can be diagnosed via stress tests and x-rays.  Remember - if your rubber bands are failing they won’t hold things together well and this is something a surgeon can feel or see.  Either your bones won’t be in the correct place or the surgeon will be able to move your joint in an abnormal way.

In my case this wasn’t true.  My bones were in the right place and the surgeon couldn’t move my joint in an abnormal way.  At the same time I was miserable.  In what I believe was a weird act of defeat, the surgeon agreed to order an MRI for my ankle.  His last words to me were “avoid uneven ground until we can figure out what’s wrong with you.”  Let’s take two seconds to think about how absolutely ridiculous this statement is: Think about the world and then list all the places the ground is uneven.  Then, think about living in a state where pot holes and cracked sidewalks are just as common as trees.  Given this, tell me how I could have avoided “uneven ground.”  Consequently, this would be the last time I would meet with this surgeon and would set the stage for round three in the OR.

[vthiker09]

Surgery #2

Google is my best non-human friend.  Goggle is my best friend because it’s always there, it doesn’t judge me, and it provides an endless string of mildly accurate medical information.  I  had a conversation about Google with my PT recently.  I mentioned I thought perhaps x or y was wrong, she gave me the standard eye roll every medical provider gives someone who self diagnosis, and then I said this: “Look, can you blame me for looking?  I see the surgeon for fifteen minutes every six weeks.  Meanwhile, I struggle 24/7 and no one can tell me why.”   She promptly responded with “I understand.” 

Between my first and second surgeries, Google became a huge source of support to me.  I know this may sound weird, but it was reassuring to me to read about others who were struggling as much as I was and it was empowering to start to learn about what actually had happened to me.  At this point, I finally knew what I had initially injured: I had ruptured my syndesmosis, which is a thick fibrous joint, tasked with holding together my lower leg bones.  Also known as a high ankle sprain, these injuries are characterized by a few things: a) they are often paired with fractures to the fibula b) they are known to be quite painful and c) they take forever to heal.  I also learned what the note on my ER paperwork about the “mysterious maisonneuve fracture” meant: most often syndesmosis tears are paired with lower fibula fractures.  Your fibula doesn’t actually bare any weight and it’s super important when it comes to holding your ankle joint together and walking.   Maisonneuve fractures are when you break the upper part of your fibula - right by your knee.  If you Google “maisonneuve fracture,” you’ll see they have alluded the medical community for sometime, because you aren’t supposed to break the top of your fibula when you rupture your syndesmosis, you’re supposed to break the bottom of it.  Having said this, it actually worked out well for me because it meant I didn’t need a plate in my leg to put my ankle back together. 

My Google journey began when my PT quit on me and when my surgeon mentioned something about how he didn’t understand why my screws hadn’t broken.  Here’s a fun fact: there are some surgical screws which are temporary.  They are placed there to glue things back together and they aren’t meant to be there permanently.  When a surgeon fixates your syndesmosis, you fall into this category.   The screws are there to help your syndesmosis heal and eventually hold your leg bones together on its own and those friendly screws either need to break or come out, because they limit your range of motion - i.e. it makes walking more difficult.   Following my bro monster visit with the first surgeon, I met with him a month later.  This was the appointment where I brought the list of questions from my PT.  It was also the appointment where he began to say the screws needed to come out.  His thoughts were the screws were the reason I didn’t have full range of motion, perhaps they were sitting on a nerve, which was why I was having unusual muscle weakness and nerve pain, and perhaps my body “just didn’t like them.”   Since he had no insight into what later would become the real cause of my continued struggles, this seemed like a good direction to go in.  

His suggestion was to wait two more weeks and if they didn’t break, schedule to take them out.  Thus, over the subsequent two weeks, I spent an awful lot of time trying to snap those screws.  I’m still not sure there was anything I could’ve done which would’ve actually helped break them.  Per my surgeon though, basic activity usually did the trick.  I am always down for moving, so I walked as much as I could, up as many hills as I could, and on as much uneven ground as I could find.  I stretched more than usual and made sure to super stretch when it came to the exercises I knew put pressure on the screws.  At the same time, I thought “WTF, who spends time trying to snap screws in their leg?!?.”

Two weeks later, I marched into the surgeon’s office cautiously hopeful operation “break those screws!” had been successful.  The surgeon had told me most people could hear when the screws broke.  He described it as a twig snapping in the woods - a sound I was super familiar with. I hadn’t heard any twigs snap in my leg and had convinced myself maybe I missed it or perhaps my twig was more quiet than others.  I hopped on the x-ray table, walked to the waiting room, was escorted into the exam room, and quickly saw those stupid screws firmly holding my fibula and tibia together.  

During my failed first rehabilitation, I began to realize I wasn’t going to be in the fortunate group of people who followed the standard healing pattern.  At the same time, there was a part of me who hoped the surgeon was right and it would “just take more time.”  Another surgery wasn’t “just more time.”  It meant another day spent in the OR, another $2000 deposit, and more importantly - another healing timeline.   This is what I’ve learned about surgery: you should only have something operated on if it’s ABSOLUTELY necessary.  Every time you are cut open and every time something is manipulated, there is a price associated with it.  It might be a few months of pins and needles because a nerve was nicked, a random allergic reaction to steri strips, or decreased range of motion because a tendon was tightened a little too much, or scar tissue which will forever make your joint crackle when someone pushes on it.  Regardless of what it is, no one walks in and out of the OR with zero consequences and every time you alter your body, it’s a little bit different and this isn’t necessarily a good thing.  

Although I struggled with “consequences” more after my third surgery, I was acutely aware when considering an elective surgery, you need to weigh the pros and cons list.  After a 20 minute question fest with my surgeon, who just kept saying “we need to take the screws out,” I decided the pros - being increased range of motion and potential decreased nerve pain, outweighed the cons - which were having to wear an ace bandage for 2 weeks, stitches, and a little more pain.  Thankfully, this surgery was minor.  The incision would be an inch or two and the procedure would take maybe 10 minutes.  

Despite the minor nature of the procedure, the preparation was similar to round one.  I went through my list of pre-surgical tasks, had Mike drive me to the OR, went through the same visits from what felt like two hundred providers, promptly went to sleep after my pile of drugs, and then woke up free of my friendly screws.  I think I won some surgeon brownie points when I asked to keep the screws.  Shortly after I was wheeled into post-opp, the surgeon appeared with my two shiny screws in a pee cup.  He seemed happy to provide them to me in the nerdy “isn’t this cool!” surgeon way, wished me well, and went on to help his next patient.  

Unlike round one, after I was able to pee, I walked out of the OR with my slightly more sore leg. This alone seemed like a win, but the true test would be if the shiny screws were the real cause of my continued struggle.   

#recovery #pain #injuries #surgery