I Ski… do you?

So maybe you don’t alpine ski, maybe its cross country but you still ski. I mono-ski. Maybe you don’t ski at all but have a sport you like to do. You are an athlete. I am too. There are many different levels and kinds of athletes, but in the end they all have one thing in common: the dedication to and love of sport.

Particularly as summer comes to a close and the fall approaches I receive some version of “oh its too bad you wont be skiing this winter!” from more people than I can count. I get a big grin on my face when I get to say back “actually I WILL be skiing just as I am!” and then they look at me funny and most do not ask any further questions.

The first four years when I was going through surgeries I was not allowed to ski. I was not stable enough. I was so excited when I finally got cleared to ski 2 years ago. I had no idea what to expect, but that first day in the mono ski is one of the most memorable days in my recovery. It was a freedom that I had not yet felt. I could not believe that I was on snow again, not to mention now had a whole new set of goals and challenges. I got to have fun. Fun where I did not think about my disability or anything else that was wrong.

Until now, I have been in a rental ski, which is not custom to me. I am approaching a level of skiing where my own ski would be very beneficial. I want to be able to use the athleticism that I have and begin to excel in the sport, to really just step (or ski) into my own! I was so fortunate to be given a grant from the Kelly Brush Foundation that covers a portion of my ski, but I still have a long way to go before it becomes a reality.

I hope you’ll read my rally story and consider supporting me, one athlete to another. Cause when it comes down to it… we are all doing this for the fun and love of sport.

“Always strive to be the best version of yourself that you can be, no matter how many obstacles you have to overcome to get there.”


Just click the picture to head on over and check out my story and rally page!

 

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What’s New?

Its been a long time since I wrote a consistent blog. Today’s the day the site changes and my direction shifts. I would love to share all things regarding life’s adventures with you. Everything from large scale trips, to afternoons in the park, my adaptive adventures, and days in just baking. The memories that are stored here in my blog are the ones that I choose to share with you. I invite you to live my experiences with me, but please remember to also respect my journey and how I share it.

So What’s new besides the appearance?
Well, the home page has changed, in addition to the direction of post content. Also in the main menu there is a link to the website for the race that I founded, the Hip Hop 5K/10K. Be sure to click around and check it all out!

On my home page there are three links under the home picture:

1. the latest blog post
2. my instagram page
3. this area is ever changing: right now it is for my monoski rally! Be sure to check out the page!

It has taken a long time and is still a work in progress to move through the adaptive challenges that I have, but I am excited to share that I am moving beyond the medical and surgical journey and into living my life to the fullest.

Until Next Time…
Em

Why?

What are you doing all this for? Why are you here? What is your end goal?

The downhill edge of my ski caught the snow and I was whipped hard down the hill. Again. Ugh. Why am I doing this? What’s the point of falling over and over again trying to get precision into my ski turns?

The clinic had been preceded by a couple days of the mountain completely kicking my IMG_1151butt. That’s probably being generous. Both my hips had large softball size bruises on them from hitting the ground hard(my arms and my back had their fair share too) and I was entering three long, hard, exciting days that would be spent on the hill learning as much as was possible and working towards accomplishing a few of my smaller goals. This was complicated not only by frustration from a few days of butt kicking, but also a progressing injury the conflicted with the desire to work hard, drill and excel. However, as life would have it, despite those complications, these three clinic days brought a lot of unexpected progression, excitement and opportunity.

I spent those clinic days continuing to get my butt kicked trying to fill in some major gaps in my monoski technique. I can push myself around, I can rotate on flat ground (why I have issues on the slope is beyond me), I have no problem sitting forward grabbing an edge and picking the fastest route down the fall line; Beautiful smooth turns. The issue rears its ugly head when I try to get sloppy skiddy turns, that scrub speed and ultimately need to be integrated with the skills I already have to establish myself as an elite skier. I have a lot of work to do;  And a lot more downhill falls in the future not to mention the knowledge it is going to take far more than 5 days to fill in the gap.

Why am I here? Why am I fighting to master techniques that just have me frustrated? World domination would seem to be an appropriate answer. Ok well not world domination, but ski world domination would be nice. It took a few people to remind me that I am more than capable and, that I am not alone in trying to reach this level.

Lucky for me, I’ve had someone by my side in the monoski world since day one. Little did I know on that “never-ever” monoski day as I was being pushed up the hill in a bucket we would be entering this journey together not just as student/instructor for that first day, but as athlete/coach, friend and mentor from that day forward. Had he not paid attention to the able bodied athlete I was before my disability, had our personalities not gotten along, had skiing on the mountain not been a blast for the whole season, I can confidently say without a doubt we wouldn’t be at the junction we are today. Back to the present… just about a year later…mid way through the clinic I started to breakdown (ok in all honesty I was probably starting to enter that danger zone after my weekend of being beaten by the mountain). I was injured, frustrated and had my sights set too far forward on where I wanted to be instead of focusing on where I was in the present, the
“now” and what I needed to do to achieve my goals. No other instructor on the hill seemed to be able to pull me out of my funk, although they all tried valiantly. My coach skied down to me and simply held my ski steady on the hill and said, “what do you need?” We talked, worked through it, and moved forward. The rest of the day was infinitely more productive, as were the days following. Its an athlete/coach personality mix that I really lucked out to be in from day one. He knows when to push me in my skiing and when its time to hold back (injuries) even when I do not want to. It’s a long term journey to get to my end goal and I couldn’t have hand picked a better person to be a coach, friend and mentor the whole way. I can’t wait to see where we get to ski in the coming years (hopefully approaching ski world domination together).

IMG_1885It’s all about the small, attainable short- term goals that lead to the end goal. It’s all about the journey, the people I meet along the way. Developing the life skills of determination, integrity, and tenacity that are so key to who I am today. And yes it’s about the bruises too. Without those, there would never be breakthrough days. I am here to defy the idea that I am my injury. I am not what happened to me. I am what I choose to become.

At the end of those 5 days, I had met some amazing people, all with their own struggles and triumphs, and each with an incredible story. New friends were made, new skills learned, new drills established, some of my small goals accomplished, others started but most of all I realized why the heck I am doing all this.

Every bruise, every downhill fall, the days where the hill beats me (hard), and the breakthrough days, all the tears and the laughs suddenly became more meaningful. Without all of those things happening I would never be on the track that I am now. This tiny little foot in the door, that opens up to a world of possibilities. My end goal?…. Well you are all just going to have to watch my journey and see if I get there. It’s a big one… but it’s why I am doing all this.

So… What are you doing all this for? Why are you here? What is your end goal?

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*A special thanks to the High Fives Foundation, Vermont Adaptive, Norm Staunton and CDY for making this opportunity a reality for all of us who are trying to give all we have to reach our end goals. Without each of you, none of this would be a possibility!

Learning to Live

Living: (N) The pursuit of a lifestyle of the specified type.   (Adj) Alive.

For something so seemingly complicated, living certainly has a simple definition. The past two years I have been focusing more on living as a whole person not confined by my medical complications. To say the least it has been a challenge to focus on being a person who instead of just getting through a day, actually lives through a day and finds a way to make it meaningful; essentially to add it to the experiences that make me a whole person. That being said, after a two year break from emi2hips and the process of beginning to learn how to live and breathe more deeply I am more than happy to be back writing to all of you.

  Two years ago I was sitting on the front steps covered in snow, filled with the disappointment that my first attempt at adaptive skiing had been delayed by the snow. From that day forward I had a new project; live each day not within the confines of my injury or disability but by the knowledge that there really are very few limitations in life except for those we place on ourselves. As I come back to the world of blogging I want to shift the perspective away from the experiences of a surgical patient and more towards the events, both ordinary and extraordinary, that make life worth actively living.

I do have a few case updates for you and will have a few more through the coming months, however I have far more stories of overcoming mountains, learning to swim with just the strength of my arms, handcycling, adventures with friends and family, finally learning how to mono ski, and meeting my other half. From here on out, I intend to write of the trials and triumphs that occur, sharing some of the things that have continued to develop me into a person that is working towards being whole. Living is not just about the moments that make us happy, but also those that challenge us, scare us, instill fear, anger, frustration, encouragement, joy and sadness. If a person is lucky enough to experience all those, then we are truly living a life that is rich.

“If you laugh, you think and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week and you’re going to have something special.”

                                                                                                                                                                                                                                     – Jim Valvano 
Until Next Time… 

Em

Abominable Snowman

The snowflakes fell big and fluffily, looking fake as though someone had just dumped them from a bucket in the sky. “You look like the abominable snowman” my brother said to me with a straight face. “Yup,” I replied “but Im not sure of another solution right now.” I sat on the front steps my face ice cold with hot tears rolling down my cheeks; I didn’t care. My legs, in black yoga pants with a pair of tall knit black boots, were completely white with nearly 1/4 inch of snow covering them. Of course, I’m sure by my brother’s comment that my head was covered in snow as well. My core didn’t feel cold my hands were warm in my pockets and I didn’t care that there was snow around me. My car sat in the driveway, covered in at least 8 inches of snow, going nowhere, my ski gear packed inside of it. My right leg was soaked and cold, but my left (although in the same predicament as the right) didn’t feel any different than it did in the warmth of the indoors. I knew though, that if my right was that wet and cold I needed to go inside.

I struggled to get up on the snowy stone and pull my crutches up from the steps, not to mention to then turn myself around to get me indoors. In the oval glass of the front door I saw myself, and I was indeed looking quite similar to the abominable snowman, my hair, coat, pants and boots no longer brown and black but white. Inside I dried off my brace, because as angry as I was I knew that was probably the most important thing to get dry. I sat on the steps and just whipped off my boots aimlessly tossing them into the other room. Even my brace, I chucked over there, knowing that was most certainly a bad idea. There was no one around, so what did it matter. I shook the snow from my crutches, now dripping wet as they warmed up. My clothes felt as though I had just sat in a tub of water and the mix of melting snow and tears still fell down my face.

I made my way to the shower on the first floor, my right foot wet, the left feeling no difference, even though surely it was as wet as the right. The tears continued to fall and I knew that the water would hide them. I turned the shower on and only cried harder. Sitting outside waiting for it to warm up I wondered why things had to be this way, why when I really needed something positive (or thought I did) it just didn’t seem to happen. I looked down at my legs, now stripped of my wet snowy pants; bright tomato red with the icy chill. My feet, the right red, the left purple, both cold as ice to the touch. I prayed that when the water hit them, my left hurt even just a bit, showing me that there is some feeling to extreme change in temperature. Sliding open the glass shower door I leaned one hand precariously on the handle, the other on the bar directly across from me sliding my left foot in, sitting down and pulling my right in behind. The pain set in, that burning sensation that I used to get on the coldest days of skiing when you get home and slip your feet into the shower and for a minute everything is painful then all of a sudden warmth just seems to infiltrate your every being; suddenly you are ok. Problem was it was only my right, I didn’t feel that burning pain of the temperature change in my left as the red in my legs dissipated. I cried, wanting so much to feel that pain, the discomfort of something going from one extreme temperature to the other.

Everything that I had been facing in the past two and a half weeks (both in my hip case and with life) seemed to flood back to the surface and hit me hard yet again. For a while I just sat there, letting the hot water fall on me. The tears continued to fall even after the water stopped, and as I dried myself off, my hand hit my left leg. Cold? Wait, seriously, cold?! My left leg after being in a steaming hot shower for an extended period of time was still ice cold. I moved my hand to my right; hot, not warm, hot. I sank to the floor, although it was not graceful like in the movies when someone sinks to the ground. Oh no, not me, as I fell to the right and hit my funny bone on the corner of the heater and my left leg hit the shower wall. Pulling my legs up towards me I sat there head in my hands emotions all at the surface, frustration, anger, sadness, confusion, you name it, it was there. When I had had enough of sitting on the bathroom floor, I pulled myself up, reminded myself of the strong stubborn person ready to face the world and pull it together.

We all break down sometimes. It’s part of living. It doesn’t matter at the time if there is worse out there because all of it is the build up of emotions at that time. What happened that had me sitting outside looking like the abominable snowman?

It honestly was a climax of a series of pieces of news and events that just threw me over the edge about half hip

In the midst of all that heres what was created...

In the midst of all that heres what was created…

related, the other half not hip related. I get upset, then pick myself back up and continue to live to the best of my ability. Learning to ski will happen, and I was not upset over that but what it stood for. This was how I had been coping, looking forward to this day where I would have a chance to do something I had not been able to do for 4 years. Sure I would have to learn a whole new way to do it, but the point was that there was an adaptive way for me to learn it. For me, this was one of that ways that I was/ am starting to build an acceptance to my situation; I needed that small piece of moving towards accepting my situation (rather than fighting it and saying its temporary its going to end). I’ll find it again, but at the time, living in that moment, it felt lost. I guess there’s one time where its no fun to live in the moment. I think everything that had been discussed about my hip case in the past two weeks finally came to the surface and I started to process it all. On top of that I was behind on a cake (that in the end worked out beautifully), and was dealing with other news about loved ones that I really was not happy to hear. It only got worse when I couldn’t feel everything in my left, no matter how much I wanted to. Its that tangible element of all this where you start to come full circle and realize whats happening.

For me, breakdowns are not often. its tough to write about them in a blog, its showing a side of me that is not seen often. But its an important side for everyone to realize exists in any recovery no matter how short or long and of varying difficulties.

Point is we are all vulnerable to collapsing under emotions. After all, they are a part of life’s journey. To accept those emotions as they come is what makes us genuine, and what makes our journey something worth living; the good, the bad and yes even the ugliest of emotions that cause us to foolishly sit outside in the snow until we blend right in. I’m strong, and I am stubborn but I also have had a lot of time to learn when its ok to breakdown and for anyone, on any journey, facing any struggle that is one of the hardest, yet most important things to learn. Accepting the emotions for what they are and not being afraid to allow that side of us to show. It allows us to being to take the steps to move forwards.

Its a Marathon… Not a Sprint

Recovery: (Noun)

: The act of process of becoming healthy after an illness of injury : the act or process of recovering

: The act or process of returning to a normal state after a period of difficulty

how slowWe all want to rush recovery, to resume our “normal” lives free of the mental and physical stressed that come with recovery. You can apply this to anything, from a surgical recovery (which I am going to delve into a bit) or the recovery from any sort of loss, or simply a certain moment in time. Recovery is relatable to a multitude of situations, most of which I am not even going to touch upon. Surgical recovery though, is something that I am all too familiar with, yet foreign to at the same time. I have yet to see any of my many “recoveries” (if you want to break them up into their own entities) to the finish; I simply have not had the opportunity to. With recovery from surgery comes the obvious, and not so obvious physical components as well as the mental aspect. The recovery of both is needed to reach a point where you feel you have pulled through. Obviously I am recovering from my most recent surgery on December 23rd, but there is the long ongoing one as well that has been going on for the past 4 years. It’s a Marathon, not a sprint Em, a marathon that is just taking its dear sweet time to run itself to completion. A marathon that has changed me, hopefully for the better.

Sprint: (Noun)

: to run or go at top speed especially for a short distance

Marathon: (Noun)

:  a race other than a footrace marked especially by great length

:  an endurance contest

:  something (as an event, activity, or session) characterized by great length or concentrated effort

I was 11 days post op, two weeks. I’ve done this before, it should be simple. It most certainly is not. I can’t quite sleep through the night, and so I spend the entire 24 hour time period sleeping on and off, getting up when people are over, or every time that pain decides it wants to be a jerk. At one of those points I finally give in and gather the effort to get myself ready thinking “ok, Em this is going to be a relatively productive day and you are going to work on the to do list that is a mile long.” Showering in itself takes more effort than it seems to be worth. And the energy expended to wash my hair, get dressed, pull my hair back and get my socks on both feet is so much that by the time I am set I want a nap. Not to mention it takes twice as long as it should. And never mind that I had my first physical therapy that day as well. After a nap, I wake up to an alarm, and have to strap my left leg into the confines of a brace that is helping me to get around, but it hurts too much to stand on my right and my balance is off so it becomes a tricky task. When that’s done I just sit and stare at my shoes wondering if there is a better way to do this. The only option is to bend over and pull them on and tie them, sigh. The 5 stairs out and to the walkway, are difficult and require more eccentric control than I have to give at that point in time. Cripe, I think to myself, I haven’t even gotten to PT yet.

Of course that’s a snapshot of time in the marathon, a millisecond if you consider a marathon being 26.2 miles and taking the average person about 4 and a half hours to complete. This point in time, is already a hundred times better than I had been in the hospital, but in the moment it feels just as bad. That’s the funny thing about you recovery, it gets difficult to see how far you have come from where you started. Just like running a marathon, eventually time seems to blend together, you know you’ve made it x distance from the start, but still just really want to reach that finish. I think that all too often we focus too much on what is left, rather than how far we have come.

Its now 19 days post op, and I am getting back on my feet with crutches, gaining some more strength in my right leg each day. This is not the first time my right hip has been through a recovery, its not the first for the left. Each one we try to gain as much strength before the surgery, but at the same time I feel like I loose a little each time that I just can’t seem to gain back, since before the recovery has been worked to completion I am under the knife again with one hip or another. Surgery does not just affect the operative hip, but the entire body. Being unable to get around causes atrophy, weakening my legs, arms, core etc much faster than I can gain it back. I have had some great initial PT sessions though, and I am anxious/ ready to really push my right… again note to self… this is a marathon, not a sprint.

If you had talked to me after this most recent surgery, you would know that my right leg was not the only thing on my mind. I am constantly thinking about the left as well, trying to balance the two so that in the end they both function and you wouldn’t know I went through this if you just met me on the street. Unfortunately, as most of you know my left is not the typical recovery, its not in a book, or at least not obviously out in the open and continues to be the main source of frustration. My surgeon keeps reminding me that I can not forget the right and that I need to see it though the complete recovery of 6 months to a year.

heres how great the scar looks now! You can see the two ends were not reopened for the surgery

heres how great the scar looks now! You can see the two ends were not reopened for the surgery

I met with my surgeon on Thursday for the first post op follow up for my right. Its odd to refer to it as post op #1, since I have had several post op #1’s and have been fortunate enough to work with the same surgeon for the past five years, which of course means many many post op, pre op, and follow up appointments. We discussed the progression of my right, which although was off to a rough start is now right on track! The scar is looking great, though one of the most colorful bruises I have had (I don’t usually bruise this bad). ROM (range of motion) is great now, with increased flexion, external and internal rotation, with decreased pinching. Pain now is mostly post operative pain and some from the bone and muscle repair but should resolve progressively as time passes. I have permission to really start pushing it through to what should be the end of a physical recovery for my right. Here I go again with rushing things.

It’s a marathon not a sprint. That is a cold fact of being an orthopaedic patient with hip issues. Sometimes there are unforeseen obstacles in a marathon, and they slow you down, sometimes cause added pain and frustration, but somehow you continue to coax yourself towards the finish line. There are always cases where your finish time is much longer than you had intended. Sometimes, expectations and goals have to be modified even in the middle of a run. My left is a solid reminder that I am only several miles into the marathon, and still have a considerable distance to go. The physical recovery finish line may not be attainable. The thing with a surgical recovery, is that the mental recovery is in your hands, making peace with what you are facing and finding a way to reach an alternative finish line. Who knows, what’s on the other side of that line may be better than you thought. Thursday my surgeon and I continued the discussion of what the next few months, years, and moving forward will possibly hold for me. We discussed the perseverance and determination that I will need to maintain, the will power to not give up, nothing we say is ever definitive for ever, its just for the time being.

I sit here today and reflect on where I started, where this recovery began. I sat in my surgeons office (one of manymoving forward people I had consulted) in pain, having issues walking and with many opinions on what the solution was. I was patient who walked with her feet completely turned out, hips popping and getting stuck, along with constant pain 24/7 that was inescapable no matter what I did. He gained my trust, we discussed my options and we made our first move, the starting gun went off and we took off like a trained runner, carefully planning out a timeline. That timeline shifted very quickly after my first two surgeries, and the path that we were taking became more complicated than we sometimes like to admit. We have worked with surgeons around the country on my case, and we both know it has taken us much longer than hoped or desired to get to this point. We are not nearly where we thought my case would be right now, we have had a multitude of unforeseen complications with each surgery and we continue to adjust our expectations. Here’s the thing, no we are not where either of us want me to be at 4 years post surgery #1 and nearly 5 years of collaborating on my case, but I can walk (albeit with crutches) with both feet pointing in a normal orientation, and my hips remaining in their socket, and most of all I am not in pain 24/7. Its not gone, but it is a hundred times better.

It has taken a lot of patience and a lot of work. Or to go with the definition of marathon, its been characterized by great length and concentrated effort. The recovery is only several miles into the marathon, but I’ve learned more about myself and the people around me than most do in their lifetime. With that being said I think its about time I go grab some ice for my hip and try to sleep a bit. This recovery is a work in progress, and I’m not quite sure what the ending looks like, nor will I ever be. I can only hope that someday I have reached a point where I feel a sense of normalcy restored to my life, with less appointments, fewer hip worries, and the stresses that revolve around my hips decreased. It’s a marathon, not a sprint Em… so try to enjoy the sights along the way… the journey in addition to the ending, and don’t forget to recognize the accomplishments and failures along the way, as well as how far you’ve come.

Post Op Day 12

Today is 12 days post op from a screw and HO removal, that although was a successful surgery has proven to take a beating on me. Going into this surgery I had many well wishes from friends and family, which it is hard to explain how much that means. However, I also had many people who (well wishes or not, which is fine) asked me, aren’t you used to this by now? The short answer: Not in the slightest. An increased tolerance for? Yes.

To be writing about this seems slightly like déjà vu, however it was still asked so here goes nothing, along with the obligatory “heres how the surgery went” details that many have texted, emailed, or in some way asked me for.

Monday Morning:

I set my alarm just incase I fell asleep but try as I did, my eyes were staring into the blank white canvas that is my bedroom ceiling when it was time to finish packing, make my bed and leave. A trusted friend of mine was helping me out and arrived right on time to take me to the hospital. I tried to be myself, to make conversation, to share what had happened during my fall semester and ask her how the first semester of her graduate school program had gone but I just didn’t feel present, in the moment as some would say. Arriving at the hospital I knew where to go, the check in ritual and how it would work once the nurse brought me back and I changed into a johnny and waited for the various members of my surgical team to come by that morning. But I was still nervous. Sure I know how it goes, the “ritual” that happens before every persons surgery day in and day out, but the surgery itself is never the same. Each one comes with its own set of risks and unknowns, not to mention just me and my body’s reaction to all the foreign drugs pushed into it, never has resulted in a straight forward simple experience.

This would certainly be one of my “easier” surgeries; easier relative to the reverse PAO surgeries, and others that were done in the beginning. The anesthesia doctor came by, a familiar face, and someone who knew to pay close attention to my case and the issues that I have with anesthesia hooking up an IV and trying to keep me as comfortable as possible. My friend sat next to me trying to keep my mind occupied telling me about the things she has been doing, watching videos of the marshmallow and cookie experiments (if you haven’t seen these that’s a you tube procrastination project for you), and overall just trying to keep my sprits up. I was doing my best to go into this surgery with a positive mind set, the hopes of being out, or at least ok for the holidays. The most encouraging thing that I kept running through my head though… “Just get through this surgery and recovery and your right hip is done for the foreseeable future.” Nothing gets more positive than that for my case with the amount of time I have been fighting hip dysplasia.

It was nearly an hour since I had been lying there on the stretcher until my surgeon came by to check in with me and mark my right hip with a bold “YES.” Both he and the anesthetist said one thing that really resonated with me and helped to calm me down a bit. “Listen,” the anesthetist said, “I know you are nervous but you need to remember that this surgery is about you and you are the number one person in that room. Dr. [name of surgeon] has made it very

I am blessed to have the support of so many friends and family... got a surprise bunch of flowers :)))

I am blessed to have the support of so many friends and family… got a surprise bunch of flowers :)))

clear that this is a big deal for both of you, that you are both nervous and that you both want this to go well.” I nodded. He continued to talk to me but the key words for me here were that he recognized that this is a big deal even though it’s not the most complex or lengthy surgery I have been through, it is still a big deal. When my surgeon came by he reiterated this and assured me that we were in this together, doctor, patient and we would deal with whatever direction this went.

Surgery went well, the screws were out, and the heterotrophic bone removed. It was amazing how much more flexion (bringing your knee up towards you) I gained just from getting that bone out, and the best part was it did not pinch (causing a nasty pain) anymore! Waking up from that surgery though, was a thousand times harder than the surgery itself. I’ve never had an easy time with this from muscle spasms to tachycardia, to the pain that comes with muscle spasms (not exactly fun if a limb that was just worked on starts shaking all over). It is all very much a fog to me, as are the first few days. I was very grateful though for the friend that stood by me through surgery, overnight and into the next day. I don’t remember too much of it, but some of the nurses were telling me and it certainly takes a lot of commitment and bravery to stick by your friend as she goes through all that.

The Rest of the Week:

… Cause going through it all would take far too long. The week was tough to say the least. I was unable to keep any food down, continually got sick, and struggled to overcome the dizziness and nausea. Physical therapy started working with me on the first day and we barely got through standing up. Imagine for a moment that your left leg exists, but doesn’t feel like that to your brain, that standing on it just feels like nothing, whatever nothing is. Your right leg, which you depended on due to its strength and worked through the pain, has now been cut into and the pain is much harder to tolerate. Your brain keeps telling you to get off it, that way the pain will diminish. Problem is now, when you shift off your right to decrease the pain, you end up on the left which scares you because you do not feel like you are standing on anything. So you throw yourself back over to the right as though catching yourself from a fall,

a good friend who brought Christmas to me :) A little Charlie Brown Christmas Tree.

a good friend who brought Christmas to me 🙂 A little Charlie Brown Christmas Tree.

which jams it into the ground and sends a horrible pain straight through your hip. This is the cycle that I dealt with all well, not to mention that standing up the room was spinning and the feelings of nausea didn’t help.

We went through this the rest of the week. I got a text wishing me a Merry Christmas and did not exactly realize that it was Christmas. Once I had been told enough times, I was sad to be missing Christmas again this year, my favorite holiday. I had a few visitors but mostly slept through my days. By Saturday I had still been unable to eat, and PT had not allowed me to walk with a walker yet. I was getting discouraged and determined to get my right one going. After all, this was supposed to be easy right? HA! Easy is relative, it does not mean that we have negated the challenges, the recovery period, the pain or being sick. My surgeon came by on Saturday and walked with me out in the hall with a walker. He had to steady me quite a bit but we did it. When we got me settled back in the hospital bed, I looked right at him and said “I told you I could do it. I knew I could do it and no one believed me.” He chuckled and said, “I never said you couldn’t, and I knew that you could and that is why I am here now.” I always love when my surgeon and I get to prove the people working with me wrong. Physical therapy had an interesting reaction to all this, but hey it is what it is and the point is that if you give me a chance to try at least we know if it’s a success or failure. Unless I try though, we will never know.

8 Days Post Surgery:

This would be it... 8 days post op... usually those steri strips are white... but it was a bit of a messier one. You can see if you are looking at this one... where he entered through my old incision.

This would be it… 8 days post op… usually those steri strips are white… but it was a bit of a messier one. You can see if you are looking at this one… where he entered through my old incision.

PT was ready to put in an order for post surgical rehab due to the amount of assistance that I needed with the combination of my left and right leg. It got a pretty solid no from my surgeon and me, and resulted in Monday being a very tough PT day. There were lots of tears, grinning and bearing whatever we needed to get through to get them to sign off on a discharge paper. Needless to say, I was discharged with full assist, but it’s better than rehab.

The evening I was discharged my surgeon showed me the xrays from surgery, hardware free!!! And the HO gone from my pelvis. It was pretty neat how different the two were. Unfortunately I do not have them to show you at the moment. Someday…

The past few days since being discharged have been rough. Both pain and nausea were better controlled in the hospital with IV anti-emetics and closely monitored pain control. I have spent few hours awake and most of them sleeping (hence the large delay in getting this post out). Sitting up has been fairly miserable as I get dizzy and just feel nauseous, and I am still waiting for the day that I can say I haven’t gotten sick yet. Hopefully that is coming soon since everyday I make small improvements. Each day comes with its good moments and bad. As far as getting nutrition into my body, I’m doing the best I can, but it’s a work in progress.

12 Days Post Op:

24/7 assistance and company ;) Lucky to have a little dog that lays next to me no matter what the time of day.

24/7 assistance and company 😉 Lucky to have a little dog that lays next to me no matter what the time of day.

That would be today. I’ve got a list of things I want to get done, tasks both hip and non hip related and they are all just lingering over me.  I didn’t think that I would be feeling this crappy 12 days out from this one, however we slightly underestimated how my body would deal with the invasion of anesthesia. Pain in the right is still prominent, but I push through it each day and slowly it will resolve and settle at a new normal pain level. It may be a shorter length of time that most of the surgeries I have been through, all of them in fact, but this is no easier because I have been through surgery before, it is just as difficult to fight through. In fact, each time that you are knocked down it’s a little harder to get up; the important thing is that you get up each and every time and hope that at some point you get up and do not get knocked back down.

You don’t ever get used to surgery or the process, and as much as you learn what you could expect there are always things that are unexpected, things you could not have predicted. Sometimes, I feel that it gets harder because the support dwindles as surgery, or “being sick” seems to be a norm in a persons life, but the thing is you need all the support in the world to get up again, to pull through and come out stronger on the other side. I am lucky that there are many who surround me, from amazing friends, family, PTs, a surgeon and nurses who continue to support me in every way possible, to help me get back on my feet every single time.

I’ll check in again soon….

Surgery Morning

IMG_5531Many of you reading my blog are well aware that my case has not followed the “typical” or “normal” (whatever those words mean) path of a hip dysplasia patient. The issue with typical and normal in the world of hip dysplasia is that no one can tell you exactly what those mean; the whereabouts and the general idea of what should happen sure, but exactly how it is going to go? Nope. Though, isn’t that true of most things in medicine? The past several weeks have been quite the mental and physical struggle for me. I seemed to start a handful of blogs and just never finish, or seem to have the brain power to finish. Silly I know, but I was not at a point where I could just sit here and type out a blog without stopping to think. It frustrated me, but I realized that I truly was mentally spent.

Tonight is not all that different, except I feel like I am breathing again. Tonight was my last final, the LAST final I may add at school, and I feel like the second it was over I began to let go and enjoy everything. There have been many things that hurt me the past several weeks, but just as many that have made me smile, laugh, cry and appreciate where I am. The beginning of November marked 1 year since my right reverse PAO, and oh how far I have come since then. November this year was a bit more upbeat. It was my first few weeks with the new brace on my left leg, not to mention I got to spend thanksgiving with family this year instead of the hospital. I feel as though I have been gone so long its hard to catch up.

The faded scar on my right from the darker colored top that you see near the bottom corner to the top corner where my hand is, you can see how long it is and part of the bone... unfortunately to be re opened tomorrow :(

The faded scar on my right from the darker colored top that you see near the bottom corner to the top corner where my hand is, you can see how long it is and part of the bone… unfortunately to be re opened tomorrow 😦

In the past month or two my hips have been a bigger interruption in my life, regardless of what I tried to prevent that. I have been dwelling on the left and trying to figure out what side I take on that, what my opinion is (because after all I am a stubborn and opinionated person). My frustrations in PT have increased, as I understand what I am told to do but can’t always seem to get the action to be produced in my left leg or in how I am performing an activity such as walking. I have struggled to get through my first semester back where apparently being a person on crutches was reason to continuously state that “being disabled is not a time to be taking a class.” Huh. Interesting thought that is… because I saw it through and completed the semester and I know that many others with visible and invisible disabilities have too. Funny that a school with so much respect has a program where something like that exists amongst several of its “professionals.” So I fought (and continue) to fight the mental battle with that one creating a mental exhaustion in combination with PT. Its tough when you feel like you are constantly over thinking just to make a very simple action, like moving your leg forward, occur.

Its Sunday night (well technically Monday morning) and it has been a year since I was in for surgery (a year that I am so grateful for and has been a long time coming) not quite a year since I was in a hospital but none the less, a great relief on my part. Unfortunately, we have to finish what we started and tomorrow marks the day that we go in to surgically remove the hardware from my hip and the heterotrophic bone that is causing a few issues in my right limb. Compared to other surgeries I have been through, its not terrible, but it is surgery none the less and certainly not something that I look forward to. I am however, quite excited that this may be the end for my right leg and that I may finally have a right leg that is fully functional and relatively pain free!! It would be nice to know that at least half of me is set and ready to conquer the world! 😉

Today I spent time with friends, went to church and sang (basically my Christmas mass since that wont be happening this year) and I started to pull myself together in preparation for the next few weeks. I live up many stairs in the city and will not be able to get up for a bit, thus calling the need for organizing what I need with me. A few Christmas carols, and watching Elf and my evening was complete. To be honest, I am quite nervous for tomorrow, a nervous excited. Surgery still remains something that I ill never ever get used to and I will be thankful for the day that it is over. The goal here is to finish up the right leg and get myself going before the spring semester; trying once again to bring some sort of balance to my medical life and finishing my college degree in medical laboratory science.

I am mentally exhausted, still struggling to write a blog post, and focus on something rather than jumping around. I suppose that is a good point at which to bring this to a close and attempt to get some sleep before tomorrow. Finals are done, I still have a to do list a mile long, but there is nothing I can do about any of this; it is what it is and as a person we all have choices in how we react to things. I am taking this in as best a stride as I can and moving forward. Tomorrow morning I head in fairly early in the morning for surgery and we will see where things go from there. I will write as soon as I can to let you all know how it goes!

“But hope also involves what I would call affective forecasting–that is, the comforting, energizing, elevating feeling that you experience when you project in your mind a positive future. This requires the brain to generate a different affective, or feeling, state than the one you are currently in.”

― Jerome Groopman, The Anatomy of Hope: How People Prevail in the Face of Illness

Never Give Up, Don’t Ever Give Up

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special”

–       Jimmy Valvano, “Never give up, don’t ever give up” Speech

My last blog was a bit of a kicker, with the amount of adversity that I am facing at school and people with a disability of any sort. There are several view points that you can take with that. It can either bring anger, frustration, or determination; A kick in the butt so to speak that you have a lot to prove. I was angered at first, that in 4 years I had not encountered so many “anti- disability” people within such a short period of time as I have in the past month. I wrote to a trusted person, who was at first involuntarily assigned as my advisor, and has now become someone that I trust to help me through not only school, but to share in the good and bad that happens in my life. I wrote to him regarding my shock, and simple frustrations with how I have been treated, when I see myself no different that someone who is walking around on their own two feet. When he replied, he wrote back with that quote from the “Never give up, don’t ever give up” speech, one that my surgeon had also referred to a long time ago when I was having a difficult time.

Its been just over 4 years since I started my hip journey and I still have the same end goal; admission to medical school, regardless of where my physical ability is at, cause I know that I have the mind, mindset and the personality to be very good at whatever I end up doing. It has taken a heck of a lot of determination and constant, don’t give up Em, just don’t give up from several people to get me this far. One thing I have learned is certainly persistence in not giving up. Often times though, not giving in, requires that you change your perspective on the situation or adjust your expectations for the time being.

So heres what this funny thing looks like... I'll put up a video later...

So heres what this funny thing looks like… I’ll put up a video later…

This applies quite well to the latest work that we have been dealing with on my left- the new functional brace! Don’t get me wrong, its super exciting and opens the door for several new opportunities. We’ve been working for a few months now on this and finally reached a point where we had all the components that we needed on the generic trial and were able to build a custom brace for my leg. The way it works is pretty simple: Based on where my weight is, and the position of my leg in space, it will remain locked or facilitate the flexion of my knee and then assist in the extension component. We can look at this in terms of my walking. If I am standing still (and have my weight in the right spot… that’s the key that I have not exactly learned yet cause I constantly seem to set off the trigger), then it will remain locked out so that my knee does not buckle beneath me. As I then move forward, to start a walking phase, I reach a degree of dorsiflexion that sets off the trigger and my knee bends in flexion. As I swing through my gate pattern (which no longer involves hip hiking… or at least minimally YAY!) it has a pressured assist that helps to extend my knee and clicks into a locked position as I reach heel strike. Its been a while since I have been able to reach full extension and a heel strike.  That then allows me to roll over it and continue through walking.

Now as simple as that sounds, it’s a work in progress to get me to the point where I recognize all these triggers and understand where I need to be in space to make this happen. We have started working on standing on just the left more and figuring out where I am centered and where it will not set off the trigger. I constantly feel like I am falling backwards and to the left. Quite terrifying mind wise actually. My brain is pretty blown after working on standing for a bit. We have also been working on walking without any assistive device, using just my PT and I. Granted I feel like I am really putting weight through their hands and I move forward, but hey its progress in some direction, whether I still

This is EXACTLY my sentiment on orgo... and still I think walking is far harder to learn.

This is EXACTLY my sentiment on orgo… and still I think walking is far harder to learn. Although this should fulfill #1 for you… a laugh for the day.

need a considerable amount of help or not.

I think this (meaning this process and vicious cycle the past 4 years, of gaining loosing, gaining loosing) is honestly the hardest thing that I have had to learn when I look at any life lessons, school classes etc. Just yesterday the organic chem professor that was subbing for our usual professor was describing the fact that his little kid was in the process of learning to walk and where her balance was as she awkwardly shifted her body through space. She was walking on an intuition, a faith that what she needed to be there was going to be there; he was making this point in comparison to something that we were doing in organic chemistry. What exactly that organic chemistry topic was I have no idea because all I could think of was how baffled I was that he was describing what I was currently learning as well.  You expect to learn how to walk ONCE in life, not two, three, four times. But ONE. Yet here we are and his child doing this for the first time is learning faster than I am who has already done this a few times. Huh. Alright lets face it, I understand why (for the most part) but its still one frustrating thing that takes that “never give up, don’t ever give up” attitude.

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh.”

Just this morning I was in PT and one of the therapists said, you always have a smile on, no matter how hard something is or how much it hurts, somehow you always manage to laugh. Ok I agree, most days I manage to pull it off, and genuinely, because what is life worth if you cant laugh and smile. At least I’ve got one step down of what I should do everyday. Even the days when I am frustrated and upset beyond what seems like you could get a smile out of me, I will find someway to pull through.

“Number two is think. You should spend some time in thought.”

This could go many ways. I think I know what he is trying to get at, and its not school related, nor is it related to my thoughts about the case. Although a better part of my brain power is committed to working through organic chemistry, biochem and thinking of a solution to my case/ trying to understand it, there is still some left for thought that is not necessarily something I think about everyday. I think that this could be quiet thought where you let your brain calm down and think about one pleasant thing, or it could be thought like this question that I was asked the other day: “Well what do you define as success?” my friend asked me. I had to think about how I would quantify such a vast thing. I came to the conclusion that it has nothing to do with how much you make or where you are but rather whom you are with and the people that surround you, as well as having a job where you want to get up every single morning whether you slept or not, have the day off or not, something that motivates you to live. That’s where I am trying to get to, and that is when I know I am successful. However, I also think that success is an on going process, and that the expectations that we have for what is quantified as successful are constantly adjusting based on where we are in our lives.

How’s that for thought? Did I get you to do #2 for the day?

Alright  “And number three is, you should have your emotions moved to tears, could be happiness or joy.” I also think that the tears can be or sorrow or frustration in addition to happiness or joy. Granted happy tears would be much more welcome but no matter what causes them you are moving through the emotion. I feel that we live in a society where crying is frowned upon, seen as an apparent weakness. I have learned that if you let yourself cry, you are able to continue your day and laugh later or move on to accept whatever it was that made you upset. Or if they are “happy” tears you know that you were moved to this extreme degree of happiness or joy.

“But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day.”

Just Keep Swimming... this is something that my hip sisters and I lived by and used to pull us through. Yesterday on a particularly tough day, I bought a new fish and put him in the fish tank... a symbol of sorts, I haven't given up yet.

Just Keep Swimming… this is something that my hip sisters and I lived by and used to pull us through. Yesterday on a particularly tough day, I bought a new fish and put him in the fish tank… a symbol of sorts, I haven’t given up yet.

How tough is it to go through the emotional rollercoaster of a day? A week? A year? But think of how much greater the reward of a laugh or simply a smile is, if not every moment is filled with joy. If you have moments where you are upset where you let yourself experience the spectrum that is human emotion. I think that it requires a certain extent of vulnerability and awareness and practice over time. But in the end ” That’s a heck of a day. You do that seven days a week, you’re going to have something special”

Never give up, don’t ever give up. Words that I hold so much more meaning than they let on in the length of the sentence. Words that are much easier to say than to live by. Words that my surgeon has repeatedly spoken to me, and a phrase that this trusted person in my life has sent along to me, reminding me that I am here trying to achieve something greater than what happens today or tomorrow. That its not where I get to, but what I do along the way and how I receive what each day brings. Never give up, don’t ever give up, and remember this prescription for a happy, fulfilling life “Think highly of yourself; never feel sorry for yourself; don’t take like life too seriously.” The day we learn this is the day that we truly begin to live.

What Would You Do?

“Think highly of yourself; never feel sorry for yourself; don’t take like life too seriously.” 

I’ve got some exciting news for later… maybe tomorrow… but for today I have a puzzling event to share. It started in organic lab on Saturday morning, I had been up since about 6 am working on lab papers and knew that I have a good 4-5 hours ahead of me on my feet so had tried to stay off them. By 9 am I was in the lab putting my bag away and picking up a lab coat for my lab partner and I. She and I were chatting when I saw a kid on crutches walking by and looking like he was just about to fall over. “Hey! Another crutch buddy!” I said trying to get a slight smile. “It’s just so difficult” he replied, “and takes all the energy out of me.” I understood, and of course had experience so therefore had begun to adapt but that doesn’t make his life any easier. Just as he walked away and I continued to put my lab coat on another guy who was standing there looks at me and says “people like him should never be allowed to take a lab, they are hazard to themselves, and to everyone else and besides they can’t even carry anything or do anything!”

Cripe! What the heck do you say to that when you ARE one of the “them?” My crutches were leaning into the coat rack so maybe he couldn’t see them but he only works one lab bench row over so surely he must know that I can’t walk.  I tried to reply as graciously as possible, posing my response as a question, “now why would you say that? I have been on crutches or a wheel chair for 4 years and done several labs successfully and without any issues.” He replied back with absolutely no reason as to why but rather “Regardless, I am sure that your lab partner did the work and you being disabled did little to nothing. People like  you should not be allowed into a lab class in the first place nor should they be allowed into the medical field.” And with that he walked away. EXCUSE ME?!  He should consider himself lucky that we were in lab and I could not just go off on him.

What would you have done in this case? I understand that there are limitations, but this was just uncalled for. As a person with a lot of uncertainty still in terms of what is coming for me and what ultimately in the end my ability to get around will be, I was left puzzled and feeling slightly diminished. This came after a few other statements about my not being able to get around during the week related to school were said, so maybe I was extra aggravated but this was still uncalled for.

School, society and disability, permanent or temporary is a very interesting and I think controversial topic. The consensus is that the world is “handicap friendly.” What defines that? Ramps and elevators everywhere? Ha! That’s not always helpful nor is it all that is needed many times.  How do we quantify this? Who quantifies it? Has that person ever had any handicap for any period of time? I don’t hold the answers to these but I think that they are important questions.

This past week on the day of the test someone in lecture hall asked me why I walked down “all those stairs” when it was so difficult. A) its not difficult, you learn how to do stairs quickly on crutches because that is a fact of life and B) I like many others don’t like all the computer screens of every other student in front of my face. Do I feel like eyes are staring as you here the click, clack clunk of my crutches going down the lecture hall? Yup, absolutely and sometimes you awkwardly catch several.

Just last week I had an organic test (hence my severe lack of blog posts) that I was trying to juggle the studying for with a job, and PT and other medical appointments. I was told that I was clearly “not ready” and that my mind was “unfocused and not where it should be due to my disability.” I can say after taking that test that I was no less prepared than any other student and actually came out closer to the high end of the curve that many! Whose to say that disability of any sort quantifies what you can do as a person?

Today’s post is very much a vent, but it is also an awareness that I want to make. To the student in lab who thinks that “people like me should not be allowed” the professor and the TF who think that my disability affects my ability to take an intensive orgo class with lab… I am going to prove you WRONG. I did not ask for this to happen to me. I thought that I would be done with this and walking within a year, back to all the things that I love to do. I have found ways around the barriers, literal and figurative. I have been frustrated, down and out and feeling inferior so many times that I have learned how to pick myself up. What should it matter if you have two good feet, one or none? Or that you have any disability for that matter when really we as people create our own abilities. This is my thought for you today, just mull it over. What would have said to that kid? To the professor? To the people that make assumptions based on an apparent “lack” of ability?

“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.”