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Yesterday’s Verdict

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , , , ,

So I had this post all prepared to be posted… um well, five days ago, you all see how that turned out. And clearly its been a while since I posted when I can’t find my blog page mixed in somewhere in the 42 tabs that I have open on google chrome. Oops. That rarely ever disappears. Anyways I had this post all set and then things went a different way and I changed my mind and put it aside for later. Sure I know this doesn’t matter much to you, just get on with the post already right? Fine, here we go.

I had absolutely no intension of writing about yesterday’s events (Thursday) but things went a little differently than I had hoped. Of course I, like many, have a tendency to pull myself back together by finding some source of hope, something that tells me things are going to get better. In my case this, especially as of late, has resulted in some very low points, and quite the roller coaster ride so to speak. This is an exhausting battle.

“I’ve had the highest mountains,

I’ve had the deepest rivers,

You can have it all but life keeps moving”

-       On Top of The World, Imagine Dragons

There are always things in life that we will not know the answer to, and sometimes even as time passes do not gain any

This is me about a hundred times over with this... my brain is on overdrive thinking.

This is me about a hundred times over with this… my brain is on overdrive thinking.

insight towards. In my case there are a lot of questions that both my surgeon and I have and no one seems to be able to answer or even to tell us in x- amount of time it will get better, that there is a 90% chance that it will get better. It is all vague and unknown. The goal was two hips like my right one… not the way it is at the moment. There is this feeling in me that I can’t describe one that just puts an ache in my heart, a spot that can not be filled. So now what? How do you keep  yourself going to PT, how do you keep working on something that is vague, unknown, and ultimately containing little hope. Where does the energy or motivation for that come? Honestly I don’t have the answer for that yet.

My surgeon and I are going to leave things alone for a while with a huge amount of uncertainty, and a side of doubt. It pains me to hear that because I do not like thinking that there is little we can do to help my left hip and leg at this point. I do not like looking at “how do we make you functional in the present situation?” That’s just dismal to think about and even worse when it becomes a reality. Sure we may figure something out. Sometimes the best breakthroughs come after a break my surgeon told me. I don’t want to give up on it, the left one, I said to him, I don’t want to let it go, I don’t want to believe that there is nothing we can do besides keep working on what we are doing now. And he replied to me, I don’t want you to give up on it, I don’t want to give up on it, I just need us to take a step back from it, and work on getting you functional for now. It sure feels like we are both giving up, but I know that somewhere we are both hanging on, we are both constantly questioning our choices and open to making adjustments in the plan should that point in time arise. Living in the unknown, is just not a pleasant thing. I don’t have much more to say, I am honestly still processing and thinking on this.

There is a feeling of emptiness, a question of how do you continue forward with minimal interruption, how do you let the case go enough to function but not so much that you loose sight of it. When do you start to accept a new level of functioning and how long do you fight against that acceptance. I’m not sure I will ever figure this out in its entirety, but hopefully someday I will figure it out enough to live in whatever situation I find myself in.

This song came on when I was on my way home, it clearly said how I feel with the path that everything is on.

“I need an answer I don’t see coming

Slow down breathe again,

I wanna stop running.

 

Drifting slowly currents taking hold.

Hold me steady- don’t let go.

 

I feel the wind picking up,

But Im not strong enough.

Stay by my side until the storm passes by

 

Empty handed loosing the fight.

Reassure me I’ll be alright”

 - Hold Me Steady, Annaliese 

 

No amount of baking is going to solve this one. (This was my project the other day).

No amount of baking is going to solve this one. (This was my project the other day).

The Escape

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , ,

“But so many people are looking to me
To be strong and to fight but I’m just surviving
I may be weak but I’m never defeated
And I’ll keep believing in clouds with that sweet silver lining”
-Sweet Silver Lining, Kate Voegel

A smile spread across my face, the sun so bright I squinted through my sunglasses, the shadows of the mountains lingering ahead of me, dancing as though saying hello. My shoulders relaxed, my heart felt light, I was not worrying about anything, my hips ached but I didn’t care, I was heading home, I had just crossed over into Vermont.

My Aunt and I had decided that we would not tell my cousin I was arriving on his birthday evening (May 1st) and staying through still Sunday. We really had not told anyone for that matter. I could breathe, as though on a vacation, free from any commitments that I had back in MA (not quite true but it felt that way). This was my first solo trip up to VT since the reverse PAO to my right hip on Nov 7th of last year. So almost 6 months later I was taking my first 5 hour drive north and I could not be happier; my hips definitely disagreed with that one.

So happy to be back in the hammock reading :)

So happy to be back in the hammock reading :)

Arriving at my aunt and uncles house felt as though I had never left, well except for the new cabinets in the kitchen! I was welcomed with open arms, even the cat did not give me any “two tail attitude” that he gives to people who aren’t usually around. Isaac’s comment was, “I knew it was Em cause I heard the crutches.” I had to laugh at that one. I was happy to be a part of my cousin Kyle’s birthday that night and we surprised him by having me go pick him up from baseball. Heading downstairs to bed that night it was like I had never left. I still had a few clothes there and a pair of sneakers plus my ‘left foot’ flip flops (I was wondering where those had run off to!). The dresser was still there with whatever I had left and the futon out and made with my fleece blanket and the hockey blanket that has always been there.

Thursday, Friday, Saturday were all beautiful sunny days somewhere between 70 and 80 and I was loving the sun, a bit too much. After Thursday both arms and legs were red but honestly I did not care in the slightest. I spent some time in the hammock reading everyday and spent most of the day Satuday sitting on the freshly mowed lawn working on the Hip Hop 5K road race stuff and simply enjoying the fact that I could just exist outside. Friday, I was fortunate to be able to meet up with my college roommate (and very good friend) at the Burlington waterfront and have a much needed catch up. The weather was perfect, the water serene and the several hours spent there chatting and enjoying the good company were well worth it.

“Most days I try my best to put on a brave face
But inside my bones are cold and my heart breaks
But all the while something’s keeping me safe and alive”
-Sweet Silver Lining, Kate Voegel

Sunday came around the corner too fast, and before I knew it I was putting on my dress and flats to head to my Godson Peter’s first

My Aunt's and I after the first communion. Love them!

My Aunt’s and I after the first communion. Love them!

communion. I was reminded far too many times that day of how “disabled” I am and I am not sure that more than a few people around me understood how hard it is to face some of those things. That morning I put on my flats, two sizes one to fit my AFO foot and the other to fit my normal right foot; I laugh outside but inside I resent what that represents. That was just the beginning. I love wearing dresses because they are the least irritating article of clothing to my hip but it also highlights the two braces that are a huge help in me getting around and not tripping every two seconds. You feel like the eyes are just burning into you wondering what is wrong, which really is not a big deal since I have dealt with that for 4 years, but it’s the fact that the jokes started coming the second we were at church for the first communion mass. My whole family was there, and don’t get me wrong I love them to pieces; they are so much of the reason that I love being up there. I would give anything to spend more time with all of them. The issue though is that there is myself, who is on crutches in an AFO, and knee brace on my left, and then my cousin who is in a boot post breaking his leg (but thankfully getting back to his own feet), and my 71 year old grandmother who just underwent spine surgery and is trying to fight her way back from that.

My uncles and dad, who are absolutely hilarious and will always be a special part of my life and journey.

My uncles and dad, who are absolutely hilarious and will always be a special part of my life and journey.

Can you imagine the jokes you could make about that? Honestly some of them are funny, and I whole- heartedly laughed. “Our family is like a durable medical equipment show,” is actually my personal favorite. But when you are in my shoes, 22 and with minimal to no idea what lies in your future in terms of functionality. It hurt me a lot, although I know its in jest, the other two people have two very different scenarios than mine; After a while I was very tempted to say its starting to tear at my heart, because we don’t know if, when or how mine is going to improve and we do not see weekly improvement on my left.

I think it is important to laugh at the scenario, yes it is funny that there are that many people injured in one family, but that laugh is only good for a few times, not all day. Thankfully, my family is such that they never cease to make me smile and laugh, and I know that they all love and care about me and where this goes, so I sit here trying to shrug it off. Overall it was an incredible vacation with family and I love the time that I spent with them.

Monday, today, I am back to reality and gosh did I make some stupid choices over the past several days while I was away. One

Missing the peacefulness of the Burlington waterfront already!

Missing the peacefulness of the Burlington waterfront already!

should never throw wood from a wood pile up to the person stacking, more than once… it results in A LOT of one legged squats on a still healing hip (the right) and a lot of bending over from the back and balancing with the core. All the driving, standing through mass and walking around did not help either. Stupid stupid choice, because today in PT my back and my right hip were absolutely screaming. Such are the consequences that you pay for an amazing several days away with family.

I’ve worked a lot on the race today, I’ve struggled with some very sore hips, but I keep thinking of that weekend and why I am still here fighting this, why I keep going no matter what I face. I needed this escape from reality, this getaway where I felt like me again, where I knew that no matter what I was surrounded by the best extended family a person in my shoes could hope for. A very special thanks to all of you aunts, uncles, and cousins for everything you did for me this weekend, you don’t even know how much I needed that time with all of you in addition to time to myself, time to get things done time to think, and time to let my hips hang out in the hammock ;) For the mental escape (not really physical) it was all definitely worth every ache and pain today!

“And I won’t give up like this, I will be given strength
Now that I’ve found it nothing can take that away

But so many people are looking to me
To be strong and to fight but I’m just surviving
I may be weak but I’m never defeated
And I’ll keep believing in clouds with that sweet silver lining”
-Sweet Silver Lining, Kate Voegel

A few more pictures from the weekend….

Another Doctor’s Opinion

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , ,

As I mentioned in yesterday’s blog (Choices and Opinions), I went on Monday of this week to talk to another doctor, at the request of my own surgeon, and get their point of view on the situation. In doing so, I as the patient, and my surgeon in our respective ways, are trying to gather as many different points of view, suggestions, and data inputs as possible so that we can make a more educated decision. This is not a right or wrong, black or white decision; in fact its this area of gray that is so expansive its hard to come down to an answer that we are satisfied and comfortable with. Complex medical decisions require the opinions of many, and it’s up to myself as the so called “educated consumer” and my surgeon to pull out what we want, make sense of it and come to a conclusion. As I have said in the past, in the end there are two people making this final decision, my surgeon and I, and we have certainly had several years of prior experience.

Complex medical situations, that do not quite follow textbook require more opinions, more input to the options that appear viable. Getting a second opinion is true in many cases, even simpler ones, and allows us to feel as though we have explored the options as best as we can and thus gives more validation to the decision that we make. In my case we have had many opinions on most of the surgeries that we have decided to move forward with, and this next decision is no exception. It is definitely the toughest choice that we have had to make.

I promised you yesterday that I would post some of the points made in the conversation with the doctor I saw Monday… and look at that I am getting them up the very next day! Whether or not that makes a difference to you or if you feel like reading two of my massive blog posts in a row… well that’s your choice. This is one of the more informative opinions that I have heard and also the first that has a few similar (yet different cases) to support the opinions he gave me. The conversation is far too long to drag you through but just a few points to touch upon here in my blog.

  • Nerves grow about a millimeter a day (this is something we have kept in mind from the beginning). If you
    The gray line is about what they measured on me, 47 cm on me, meaning about 470 days.

    The gray line is about what they measured on me, 47 cm on me, meaning about 470 days.

    measure from the top of my femur to the top of the fibular bone is about 47 cm. You take that and you are looking at about 470 days, or roughly a year and a quarter for my sciatic nerve to heal from any injury and reach the level of my knee. Running a test looking for a Tinel sign (used often in carpal tunnel) is a way to detect irritated nerves. He tapped over my sciatic nerve for evidence of excitation, trying to elicit a sensation of tingling down in my foot. Ideally, it is a spot indicating where healing is marching down the leg so to speak. He hit a point where I got that sensation, and he marked it to then measure from the top of my femur to that point- 27 cm, translating to about 270 days worth of healing. Problem being I am about a year and a half out. Could it be healing slow? Sure, and there the question of leave it or do something comes back.

  • Why measure to the top of the fibular bone and not to the ankle? Well at that point around the fibula, that’s where a lot of the interesting motor work starts with the sciatic nerve. When it reaches that point the theory is that ou would start to see more motor input occurring in the lower leg.
  • So if I have about 27 cm worth, to get to that point where motor innervation started to get interesting, I’ve got another 295 days give or take. So close to another year. Not convincingly so though he told me saying that the average healing time upwards of a year to a year and a half depending what study you look at.
  • The incidence of sciatic nerve injury within the general populous with PAO surgery (including forward and reverse which is not a large group compared to other procedures) is anywhere from 1.8-2%. The alarming issue to a surgeon is that you can not always tell it occurred during surgery if there was not an obvious sign. So then what do you do?
  • The surgeon presented to me two options that he sees feasible in this case.
  1. You follow it and wait for it to heal, understanding that it can take a mm a day and thus healing can take upwards of a year to a year and a half. Assuming that eventually it will fully kick in.
  2. Explore the nerve surgically, check to see if its just stretched and should be left alone, or if healing is impeded by scar tissue and could be helped with a nerve graft. Exploration, could also lead to doing nothing but letting you know that waiting should at least yield some results eventually.
  • The sciatic nerve is about as big as your pinky on the average person. It has two main branches that come down
    The sciatic nerve and roughly its two branches from a posterior view. The red box I put in is where you get more of the interesting motor to the lower leg.

    The sciatic nerve and roughly its two branches from a posterior view. The red box I put in is where you get more of the interesting motor to the lower leg.

    and it really doesn’t get to the functional portion until an area on the anterior- lateral side just below your knee. So in my case covering the remaining distance that seems to be indicated could take another year. Is it possible? Sure. Guaranteed? Nope.

  • If you end up doing a nerve graft, you reset the entire time clock in terms of healing. So those 470 days to reach my knee start all over again (if this is what becomes needed). But essentially, at this point I have not made it that far anyways in the 17 months or so that have passed since surgery.
  • With nerves and testing the big ones like the femoral and sciatic nerve think of it like a big fiber optics cable where you have one big cable (the nerve) with a bunch of small fibers running in bundles through the sheath. You can actually test each one of these individual fibers intra-operatively finding out which ones are motor and which are sensory and which ones are having issues. Ideally you find some in tact, a lot in tact or in the spectrum not a lot. You take out the segment or the scar tissue and then you try to find the good segment and connect the two ends using a nerve graft. Which they actually don’t have to take a nerve from another part of the body; the past few years they have found that they can use a scaffolding type nerve graft.
  • What he did say, was that there is evidence that after a year and a half the results of getting the peroneal nerve to start go down, plus or minus some data with no clear results of the effect of e-stim on the muscle. But we do need to decide soon if we are going to explore the nerves or not.The nerve endings that are on the muscles start to die out due to not receiving consistent messages (is the simplest way to put it).
  • Healing often comes in fits and spurts. Sometimes you feel like you hit a wall and then you can gain 5 cm (50 days worth) in just a couple of weeks. There are not enough studies and it is widely variable.
  • He has had two patients that had a similar debilitation, but the fact of the matter is that all of us are different. This small sampling of patients all present in clinic with issues with different nerves. Sometimes you go in and find its just a stretch and leave it alone to keep healing, or sometimes you find scar tissue and need to use a nerve graft. There is a possibility of neuritis being the cause but at a year and a half out that option is getting to be less and less likely.
  • If anything he said, you choose to go in to gain both your surgeon and you a little more sanity about the possible etiology and whats happening and a better idea of the outcome that you can expect. It never comes with 100% certainty.

 

So that’s the clif notes to what happened at the appointment. The appointment was lengthier than I thought it was going to be, much lengthier actually, but it was definitely one of the more useful opinions that I have been able to take and draw parallels with my own surgeons thoughts and start to form my own opinion on what I want to do with my case. Like I said yesterday, we always have choices, this is just as much my choice as my surgeon’s.

Choices and Opinions

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , ,

“I’ve had the highest mountains, I’ve had the deepest rivers, You can have it all but life keeps moving.”

-Top of the World, Imagine Dragons

Time keeps escaping me. The weeks seem so short, while the days seem so long. I’ve been on a roller coaster ride for a few weeks now, experiencing some fairly steep highs, and some extremely deep lows. Discussions have been all over the place, with multiple ideas of how to proceed from this point forward being bounced around. I’ve been going around in circles with all this since the beginning of February, which is complicating the ability to give anyone any definitive facts.

So what do we know?

Well, we know that my right hip is getting better, consistently and fast. I started walking around with two crutches for about an month now and I can make it 100 times further now that I can when I started. Strength is increasing and I can now complete 30 straight leg raises, and side lying leg raises amongst other exercises that had not been possible since surgery. The surgeon I saw yesterday (Monday the 18th) was impressed at the progress of the right hip. We know that at some point the HO and the screws will be removed from that hip. We also know that my left leg is not cooperating, and that it is the source of extreme confusion. Clinically, it presents with weakness and minimal sensation. We know almost certainly that my right leg will continue to get better over the period of a year to year and a half post surgery, and that both my hips now have stable hip joints.

What don’t we know? And where do the major debates lie?

Mainly in the left hip and leg. There are many small questions that add to the over arching questions, of what the heck caused it? And what do we do about it… if anything?

In the past week or so we are feeling more comfortable, and confident that my right leg is going to do just fine and our (my surgeon’s and my) focus is shifting more to my left leg. No one seems to be able to give a direct opinion, stating either yes or no to operating on my hip again, which leads to the most common response in general, “I don’t know. That’s a really tough one.” Great. Okay. Gee Thanks. And the end result you have one more opinion and haven’t really moved anywhere. Its like running on a hamster wheel… you generate tons of energy and tons of frustration cause you don’t seem to get anywhere. There comes a time when decisions need to be made; and that my friends is where everyone seems to agree. We don’t have much time left to decide if we go in on the left hip or if we leave it alone.

Just yesterday I met with another surgeon at a different hospital, at the request of my surgeon. Our hope was to get input from someone else that saw the patient on paper, as well as the patient (me) in clinic, and by doing do to get some input that helped sway up one way or another (to put it briefly). The surgeon had discussed my case with my surgeon prior to meeting me and was given everything that we had on the case. All that was left was to see me in clinic.

There are many things that were addressed in the appointment, including the options that he saw feasible (I will try to put a brief summary up tomorrow), but all of this essentially just needs to be placed with all the other input that my surgeon and I have to ultimately make a final decision on that left leg. With things like this, you let thoughts roll over and over through your head and it is very hard to stop thinking about the case. Many different opinions on what is happening, what to do, and where to go and in the end it comes down to the decision of two people, my surgeon and I.

Snowy drive, just a little thing that allowed escape with a friend for a few hours.

Snowy drive, just a little thing that allowed escape with a friend for a few hours.

Decisions can be overwhelming, sometimes to the extreme. You feel like they are starting to beat you, as though a choice is never going to be made. Sometimes you feel like you have formed your opinion and then moments later you could change your mind in the complete opposite direction. I think that all too often we get wrapped up in so many ideas that we forget where we even started; what the initial question was and ultimately what we are trying to answer. I find that even little things can only distract me while they are going on. For instance the foot of snow we got the other day, and just going out and driving in the snow. That was a little thing for me that gave me a few moments to forget about the choices that are hanging over my head. Or completing a simple, mindless cupcake order for a customer for St. Patrick’s Day. Going to lunch with you very best friend even though you are both stressed and patience is short. Having a friend that lets you vent and cry through everything and then can drag your mind completely off the subject once its been properly addressed. Working on a graphics project for someone or reading a book, these are all things that get your mind somewhere else. The harsh reality with tough decision is that you can not escape until a choice is made.

a simple cupcake order... that even though I was not personally doing well, was a good short distraction.

a simple cupcake order… that even though I was not personally doing well, was a good short distraction.

Just a week ago my surgeon talked to me about choices. “You are an opinionated person,” he said, ” you have a choice in all this stuff, alright?” I simply replied that I no longer felt like there was a choice (in a few more sentences than that of course). ” We ALL have choices with everything” he stressed, ” And how we deal with that, and how we put our mind into that sort of stuff is the choice that you have, and you always have control over that. Every single one of us does.” We are facing yet another big obstacle in my case, another choice, another decision where you can go left or right and neither one is necessarily wrong. We will take in all that we can, consider all input, and in the end my surgeon and I will make the choice with our formed opinions.Opinions, choices, and decisions go hand in hand in almost every scenario in life that ends in a decision being made. It doesn’t mean it was the best, but that the parties involved saw it as so at the point in time the decision was made.

“I coulda gave up then but then again I couldn’t have ’cause I’ve traveled all this way for something.”

-Top of the World, Imagine Dragons

Battle with Walking

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , ,

“You don’t learn to walk by following rules. You learn by doing, and by falling over.”

-Richard Branson

When you were little you were scared of the dark, or maybe it was the boogie monster. As a teenager maybe you are scared of speaking in front of a crowd, or maybe you got in your first car accident. As a college student you fear not finding your place in the real world, whether that be in family, job, or friends. Of course I am making assumptions here but you get my point, we grow up with fears, hopes dreams, aspirations, goals, sadness, weakness, strength, frustration. Some of these we expect to experience once, others many times. We expect to learn how to ride a bike once, and to never forget, and amongst these things is sitting up, crawling and walking.

I realize that I have a few posts about walking.– I’ve had to go through this a few more times than once unfortunately or maybe fortunately I don’t know. It certainly does not seem to get easier at any time, this process of learning. I went back and looked at my older posts about it and here’s the thing, each one is different because each time has been a different experience and there have been different circumstances depending on where each hip was at.The battle with walking never seems to end.

There is a gate belt tight around my waist, the goal being that it wont slip and will serve the purpose of holding me up. My PT reaches her arms out to help me stand up which is easily done (although that was not easy right after surgery, nor was learning how to sit up straight without falling over. They were learned fairly quickly in the grand scheme of things but the point was I had to get used to it again). I hold tight to her forearms, with an immense trust in her that she is going to help me. Two other therapists stand with us ready to assist in this endeavor. One gets behind me and puts her hands firmly around the gate belt; the other goes down to her hands and knees and is going to help with the gait pattern of my feet. My therapist remains in front of me holding on, and me, I just stand there thinking so hard just to keep my balance, already holding my breath knowing what comes next. Today, we start working on walking.

I’ve been here before. In fact I have been here many times before; this point that you reach in rehab where you are learning to walk again. We are not talking about a simple weaning off crutches and just a matter of strength. This is different. I have done it several times actually, this learning a gait pattern and learning where my hips are in space and the proprioception. Its hard to explain because unless you have an issue with them, you are not so acutely aware of the changes in the proprioception of the joint. I have had to go through re learning this after several surgeries, and just as I started to get it I was in for surgery again. But this process got particularly hard after my left hip anteverted (reverse) PAO in September of 2011. I struggled then to relearn walking and the pattern and the proprioception of my joints and since then have been through 2 more surgeries in the saga, the latest being my right hip reverse PAO in November of 2012. I have yet to get to the end of learning to walk and it is infuriating. Now here I am facing it again, still trying with everything I know to get it down and still getting frustrated, feeling like I am failing with each try and starting to get angry that I haven’t been able to completely relearn. Yes, it takes time, but this is way more time than it should ever take. This is taking far more time than it took to learn when you were a baby.

Im staring at an angle my eyes just seeing my PT’s knees and the floor and nothing else; I don’t look side to side, I do not look to where we are going or at the other PT’s helping us. I am nervous, and scared which is very very hard to explain if you have not been through this process. We start with picking up my right and moving it forward, meaning that weight goes through my left. It buckles and I feel a strong pull on the belt and my grip on my PT tightens; I suppose you can say I felt as though I was holding on for dear life. The PT at my feet is holding my right keeping me from letting my ankle roll in and helping me move the left at the same time. I have no problem putting weight through my right, I do in placing my left one forward. Its there, I think, and we are back to moving the right. I move it as quickly as it will allow, relieving my left, and straightening my knee locking that right leg out easily to step on it. My right ankle rolls beneath me ending collapsed inward, but I now feel most balanced. I am thinking really hard to make this happen, intensely just concentrating on one thing, not letting my focus waver. My breath is still held, and I am depending more and more on my PT; she knows me well, she knows I want to be pushed, she knows I want to walk and how frustrated and devastated I am that I have not been able to get there. She also is well aware that I am scared, and is cautious of what I am feeling in terms of both my hips as we walk.

Finally we get to the window sil on the other wall where we sit for a moments break. I am out of breath, as I finally am breathing after that stretch of walking. It is a lot of work mentally and physically for me to make it that far, even with three people helping. I am not proud of that, it was messy and it was far from anything that it should be. I do not think that this is a pessimistic view of what we had just done, I simply do not see it as anything that is to be recognized at this moment in time. I can not even make it through a whole day on crutches yet.

After our moment (literally a moment) of break in between walks we headed back to the table. Again one PT took hold of the gait belt, my usual PT holding out her trusting arms and me clutching tight, breath held before we even started. This time was a little harder for me as the PT on the ground moved my right through a better gait pattern and made me attempt a balance on my left a bit longer. I wanted to scream in frustration every time the left buckled beneath me. My focus remained on one spot, and that spot was a blur as my mind was truly focusing all its energy on getting me to move one leg and then the other. It is extremely hard to describe to you all, how frustrating this whole process is because this is something that we never expect to lose and rarely for this long.

When we finished and my PT and I walked back to the other room she asked me if I was scared. I just nodded. Then I attempted to describe what it felt like to me. There really are not enough words to describe it and this is again where it is difficult to understand if you haven’t had an issue with your hips that makes you painfully aware of where they are and what it feels like. My right one I said, is great; sure it hurts to stand on it, but it works and I feel it and its solid. I do not feel like it is slipping any more, I know that it is there. I trust it. I only wish my left one felt the same. My left, I tried to describe, I think I am moving it forward, but im not 100% positive and when its on the ground I do not feel like it is there and that I have something that is solid to step on like my right. I am aware that my leg is there, I can initiate movement in all directions, but I have a lot of issues finishing them and it is very hard for me to tell where my leg is in space if I am not staring at it, getting that visual input.

I can’t even begin to call this walking. As I said I still can’t quite make a whole day up on my feet on crutches, and this whatever you want to call it was a mess. I know that we are going to keep trying, that that is the plan for now moving forward. I also know that there are going to be many days like today where I come home and my hips are in pain, and I just want to cry in pure frustration with it all. I am doing the best I can. Often times I feel like that best is not enough, but what more can I give? It took 4 people today (myself included) to get a few sloppy stumble- ish steps to go across a room. I know that people say you have to start somewhere, but this, this is not somewhere not yet because still there are no answers.

“My grandmother started walking five miles a day when she was sixty. She’s ninety-seven now, and we don’t know where the heck she is.” 

-Ellen Degeneres

Post Nemo Hip Happenings

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , ,

Before I begin: warning, this is a jumbled mess of thoughts, maybe its post blizzard, lack of blogging sickness, word vomit, whatever you want to call it, i’ve got no clue, but enjoy!

Snow filled doorway. Post Nemo.

Snow filled doorway. Post Nemo.

Alright, and we are back online, a week after the winter blizzard Nemo hit the northeast. I spent the weekend (Fri- Mon) at a friends house with her and her kids for the weekend which was fabulous. But in the midst of all the snow I completely neglected my blog. For those of you reading who do not live up here in beautiful New England, where I live was blessed with two plus feet of snow in just one night’s snowstorm. It was gorgeous but it also made traveling and anything else very difficult for the weekend. Anyhow, after all that I am back and here to uphold my promise of keeping up with my blog.

 

Last week ended on a rough note, which resulted in a tough start to the week. I met with my surgeon and the news was not exactly what either my surgeon or I want to be discussing at any point in time let alone then. The right hip is the easiest thing to start with because it is progressing since the surgery in November, slowly gaining strength and function. It is not quite to full weight bearing. The most significant complication on that side remains to be the heterotopic ossification (basically bone forming abnormally in soft tissue)… or as my surgeon says, “oh f*#@” and the question we both have is why the heck is that even happening to such a large extent.  Pain is getting better, though still bad through the front of my hip where the HO and the screws are. Rare complication… haha saying that basically indicates that we can expect it to happen to me.

Too many Nemo pictures to share for one post!

Too many Nemo pictures to share for one post!

The left is another story. Take everything that you know and imagine your entire world, literally everything but the people you know and the places you go, being flipped around. You can’t get around without help from crutches or a wheelchair, and you have a brace on a leg to keep your foot in the right position so that its less likely to trip you (though not guaranteed) and another to keep your knee from crumbling under you. You lose every “normal” way of doing most of the activities you used to, your passion (in my case dancing), your recreational things, skating, skiing, hockey, running, biking etc. Of course you still have your sedentary pastime hobbies, but even some of those are made difficult. Cake decorating, you can’t carry the cakes, or stand up to get at the right angle, or even sit in a position that creates pain because then your hands shake. Its hard to reach anything that’s not on the lower shelves, or out on the counter. I mean lets face it you are about as tall as the average 7 year old. So this is what we felt like when we were that little huh.

Snow like this... is awesome, but difficult without my own two feet!

Snow like this… is awesome, but difficult without my own two feet!

Anyways, back to painting this picture for you. Going out becomes difficult in anything but sunny weather. Snow requires that “4 wheel drive” be put on the bottom of my crutches which is great outside, but does not agree with tile floors inside entry ways… I learned that one the hard way. And at the moment being in a wheelchair is difficult to get anywhere in the snow on my own. Meeting people for lunch or coffee or a fun outing takes into consideration, are there stairs, is it accessible to crutches or a wheelchair. Even school comes into consideration, as you start to wonder if the path that you are on is conducive to being stuck on crutches, if you are ready to fight all the battles that are on that path ahead. Not that there any any paths without battles, but certainly some have less than others.

But here’s the thing; even though there really doesn’t seem to be an upside to this, besides the fact that I am alive and I still have people who are supporting me, sharing their love and care each and every day, there is one thing that I have come to realize. Uncertainty is going to be a part of this, and it’s not going to go away, the key is to find people who are willing to work with it. Days where I am in tears and can’t really get much out are going to occur, and I have to surround myself with people who understand that sometimes the waterworks just need to run until there is nothing left. The fact is I can’t really look forward more than a week’s time, which means that things planned in any more advance, may have to change. Major things like school and where I live can be decided, but with the acknowledgement that there must be flexibility there and that it will change constantly (this has held all too true over the past 4 years). No matter how much I plan, how much I worry about what to finish my degree in, or when I am going to finish, what career path I want to jump on, I really have no control, as its already all decided. Yes I do believe in the fact that each and every one of us has a planned path, which goes right along with the belief that everything happens for a reason. These two ideas are extremely hard for me to accept with a situation like mine, or anything difficult because seriously I mean who wants to believe that those things happen for a reason, right? But what else are you going to believe, how else do you find a beacon in the midst of a sea of struggle? You don’t. You can only tell yourself for so long that its temporary, before that starts to be an invalid reasoning.

Delight in the little things. Isn’t that what people always tell us. Value today, appreciate what is right in front of you,

Delicious cookies :) Made this week with a good friend of mine!

Delicious cookies :) Made this week with a good friend of mine!

find the good in your situation, make the best of where you are. Those phrases are all fine and dandy and easy to say, but I for one have found they are damn hard to execute. We are all human and those things are all almost counter intuitive to the society that we have been raised in.  The best you can do is attempt to live life this way and I guess that is all that can be asked from any one of us. My little things this week… hmm. Baking muddy buddy cookies (basically a peanut butter cookie covered in chocolate and powdered sugar, sure to solve any craving that you may have), playing the piano a bit, putting together a bouquet of flowers for a friend, and having one week free of any hospital visits (the first since my surgery)!

My current feeling—still persiting– after meeting with my surgeon a week ago, is as though all the doors and windows have been shut and I am left sitting, suffocating, in a closed room. Hope seems to have escaped, unless its hiding in one of the dark corners, terrifying to feel trapped even within

Another small thing to add delight to my day.. photography, this one of a beautiful flower from a bouquet in the house :)

Another small thing to add delight to my day.. photography, this one of a beautiful flower from a bouquet in the house :)

yourself. As I have asked some of you, have you ever reached the end of your rope only to find that there is no knot at the end to hang on to? (and no its not a round circle rope, as a funny uncle of mine suggested of course eliciting a smile from me) You hang on for all you are worth to find some shred that lets you know something is going to be ok, something is going to work out in the end. It’s the worst feeling I have ever felt, a feeling of ambiguous loss that I was not really sure was possible.

But life goes on, and each day drags on with things to do, tasks to complete and people to see, whether I can walk, wheel or crutch around. As my surgeon said, you know the rule that things come in threes? Yes I said, all too well, and I think we are up to about 300. In the hip world, torture hour (physical therapy) starts next week. I wrote to my PT and she just said FUBAR in regards to my situation. For those of you who don’t know, “effed Up Beyond All Repair”, to which she finished that with Em, I don’t think this is going to be your year. Ha, let torture hours commence.

When it rains, it pours, it blizzard?… pull out the rain boots, coat, umbrella, hat and mittens, shovel what ever you need and go weather the storm. It may seem to last an eternity, but life says it can’t last forever.

In the end I know that I always have a best friend waiting for me at the end of the day no matter what my mood, happy, sad, confused, frustrated, anything is fine with him!

In the end I know that I always have a best friend waiting for me at the end of the day no matter what my mood, happy, sad, confused, frustrated, anything is fine with him!

Frustration overrides improvement

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , ,

I have been thinking about how to write todays post since i want to put in updates on PT and my adventures with Jess, and the things are so contradictory I am not sure where to begin or whether or not they belong in the same post. My time with Jess is fun filled and unending laughter where as PT is just a source or frustration. Well, I feel like my time with Jess warrants more than me typing on my phone- I’m away camping with her at the moment an don’t have any Internet but the 3G on my phone- can you imagine we all used to live without Internet and phones ;-) oh those were the days of a true vacation. Look at me I can’t even get away from my blog posts! Well I guess the solution to this is to write about physical therapy for now (since it doesn’t matter whether I’m on my phone or not!)

Physical therapy. Torture hour. I think many patients who have experienced this for a lengthy period of time understand exactly why we refer to it as torture hour. I have been in PT since I was 15 years of age… It’s now almost 7 years later and here I am still in torture hour every week. At the moment I am still working with the new therapist in Vermont where I have been for just about two months. Things are continuing to improve, but I am also getting increasingly frustrated. There is a certain “life principle” at work here, as I like to call it, where the negative no matter how small or great overrides the positive in a certain event in life. As people I think it is much easier to dwell on the negative rather than the positive. The challenge then is to get our minds to divert their attention from the negative and almost overlook it, convincing ourselves that it’s going to get better. Make sense? I am sure there are plenty of events in your life that you can apply this to. At the moment this is the best way to help you see what is occurring with torture hour.

Last week, 8 days ago Jess arrived and I got her up on Friday just two days after she arrived, to leave at 3 am in order to make it to my 830 am PT on time. I drove the 4 plus hours up to therapy and then was worked real hard that morning. Jess even commented (which she herself is definitely an experienced pt goer) that I was worked very hard that morning and she couldn’t believe some of the things that we were working on.

That day I walked in and the first thing my PT asked me to do was stand leaning against a wall, pick my right foot up so I was only on my left and to do single leg squats. You. Are. Kidding. Me. I thought to myself. I was unable to complete these on my own and needed heavy assistance the entire time especially going from where my knee was bent to making it straight. We also worked on my demi pliés (basically mini squats in dance terms) in first (heals together) and second (feet almost shoulder width apart). Along with this we did stepping from first to second and back to first with the majority of my weight bearing work on my left leg. My left exhausts very quickly. She had me run through some other activities as well and then we finished with working on my walking with one crutch on the left side supporting my right.

Since then I have had a therapy session in the pool and another on land. I have definitely been slacking since Jess has been here. In the pool we worked on walking and treading water as well as several weight bearing activities on my left. On land we did several more new activities which my left tolerated but just barely. The endurance of my left is definitely lacking. I still have a lot of strength to gain and endurance to accumulate before my left will be good to go.

The past few sessions my PT has talked to me a lot about my right hip. She said that there is an obvious limp on my right side that is quickly becoming more severe as she now notices it not only on land but also in the water. Its been giving out on more often and the number of times it gets stuck and clunks back into place (causing more pain than it’s already in) is increasing in frequency throughout the day. My PT said she is worried about how much longer that right one is going to hang in and that she can see it in my face every time she sees me; the pain is evident she said you can just see it in you and you are clearly exhausted from it. The right hip does not seem to let you get as far distance wise anymore either she told me. I think it’s incredible she can see all this because it is definitely the way I feel. Just this past wednesday when I was there we talked about how quickly the right is “going down hill” and that we need to keep pushing my left one to get better as much as we can without causing injury to it. That being said, she stated that the left one could definitely handle me going in for surgery on my right come August or September. She said that even though I need supervision to walk on it I will be supervised the entire time in the hospital and in rehab therefore it should not be a problem. I can get about 20-30 feet with supervised walking. It’s going to be a struggle that is for sure, since my right is non weight bearing for a minimum of 8-12 weeks. She said that the majority of my time is going to be spent in a wheel chair and it is going to be a long time before I am able to walk a long distance with even just my crutches. The closer this even gets the more real this all becomes and the more I try to deny the fact that it’s going to be continued struggle.

I see my surgeon again this coming Friday, one week from today actually; so I will see what that brings. Maybe I will have a better idea of a time frame. Even just having a date would help me prepare better and at least give me a day to look forward to.

So although things are getting stronger and my plantar flexion is slowly improving. Walking with one crutch is slowly getting better as well although I still need a lot of assistance/ supervision while I walk; the amount of help I need is slowly getting better. What overrides this is the frustration in the numerous things that I can not do that I keep working very hard to try to do. The struggle to do things even with a lot of assistance. There is very little that I can do without someone helping me. Therefore to do most things without two crutches I would need constant supervision. This makes me angry because for the amount that I work on these things every day I don’t see the amount of improvement that I want. Another way to put this, is for the put I get very little output. Some people would say that the improvement is huge (to the medical personnel working with me it is) but to me it’s minimal. I don’t think that this is being pessimistic about it all ( I still have a positive attitude) this is just how I feel about everything. It’s that principle where the frustration overrides any positive improvement.

For now I’ve got to go… One can only type so much on the phone, and it’s time to have breakfast and get to the beach :)

20120713-102213.jpg

Neuro and Hip Sisters

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , ,

Jess’ arrival!!!!!!!!!!

The excitement of my Australian “hip sister” arriving has been a total distraction from writing my blog and although there is nothing bad about that at all, I apologize for being absent from my writing. Today’s post is a bit scattered as I have a bit to briefly catch you all up on regarding my neurology appointment (which happened the afternoon of the same exact day that I was on the today show in the morning), as well as PT and of course (most importantly to me) on the arrival of my Aussie friend Jess!

Neurology is frustrating. That is the bottom line and the main point here. I had asked my surgeon to attend the appointment with me for multiple reasons, far to complex to explain at the moment. However, it is important to note that with his attendance as well as my uncles, the amount of anxiety and stress that I had walking into this appointment was greatly decreased. My uncle had picked me up from the airport just before 1 pm and drove to the hospital in time for my 2:30 neuro appointment; for which I may add I was taken right on time (a definite rarity in the neuro wing).

The nurse paged my ortho surgeon and he was the first to arrive in the room with big congratulations for my win that morning on the Today Show in NYC. He said that he had watched the whole thing online before he came, and that it was amazing and made him so proud. I knew you could do it, he told me, despite everything else that happened to you I knew that you would pull through because you are just that strong. And you made me so very proud to see you standing without crutches, he remarked. Although he also said that he noticed how turned out my right was and that I never once shifted the weight to my left. I told him that over the 2 days I was in NYC my hips took a major beating. My surgeon continued to share the news with whomever we saw that afternoon, almost like a proud father who couldn’t wait to share his excitement. I think that his reaction was among my favorite from the results of the Today Show, simply because he truly knows how much I have struggled the past 3 years and the significance that this one day, with a few hours of sheer joy held. To have him share in that moment with me, one that was not surgery or struggle but excitement and happiness, was truly amazing.

Anyways, goodness look at me babble on here, lets get back to this neuro appointment.  My surgeon and I discussed what needed to be addressed during the time with the neurologist, and also went over the improvements that had been made since my MVA. I have gained a slight bit of plantar flexion (pointing foot down), I still have nothing in terms of dorsiflexion (flexing foot up) though; so not amazing improvement in the foot but something. My quad is definitely gaining strength slowly but surely. The important thing is that it is improving in the correct direction. I still have control over my leg and am able to move it in any direction that I please; it is just very weak. The main pain in my left hip is through the iliac crest where my screws are. This can be extremely uncomfortable, sore and painful. We discussed all of this at length with the neurologist, who I do not exactly get along with. There were three things that we discussed, and I feel like all were left hanging with a significant amount of uncertainty.

 

  1. Lack of strength in leg/ near inability to move ankle and toes: Not sure what is causing this, clear improvement to my quad but minimal improvement in the foot. My surgeon was thinking run an EMG and see where things change, but the neuro didn’t jump on that.
  2. My MVA incident: Again minimal thoughts on this, but felt that this question was appropriate: “Approximately how long was it from the point that you passed out to the time of impact on the truck?” Um… seriously?! I was passed out. Meaning I have NO CLUE. I was asked several more questions like this where I have no idea how I would be able to answer. This just made me frustrated and angry with the man. An EEG is going to be run for further evaluation here.
  3. My spine: A few months ago we found a concerning spot on my spine in an MRI scan of my thoracic spine. No conclusion was made on what exactly it is, though it was confirmed to not be an artifact. There was concern expressed by both the radiologist who read the scans and the anesthesiologists. Neuro seemed to want to take action, but now is sitting back and will reevaluate 6 months to a yr out from the initial scan to see how it changed at that time. I am not so sure that this is the action that myself or my surgeon wanted to hear with this.

 

Three things and I felt as though we got no where. There are a few other critical issues that I have with the neurologist that add a

A write up in the paper from my Today Show experience!! Pretty Neat!

whole other complicated dimension to this discussion so for today we are going to avoid them. Lets just say that I do not agree with this neurologists approach.

Following speaking with the neurologist, my surgeon and I spent some time discussing where we were at and what was to be done next. We decided that I would follow up with him in 2-3 weeks and that we would also seek second and third opinions outside of the hospital (so that I start with a clean slate in the physician’s eyes) on the neurological side of things. We further discussed my hips as well and it is promising that surgery will be occurring in September on my right hip. There are several precautions that will be taken and a lot of details that still need to be worked out.

The neuro appointment that Thursday was not an easy one, and I fell very fast from “cloud 9″ which I had risen to after the Today Show that morning. I figured though, that I needed to just push the neuro appointment out of my mind for the time being and try to just enjoy the success that I was having with my baking. I have done my best to just live in the moment and the excitement that has been surrounding my last week or so.

PT has been pretty challenging and frustrating lately. I think that I may save this conversation for a post later in the week since I have PT tomorrow morning. Why not lump like subjects together right? Oh look at me jump around in this post today… a little glimpse of what it is like to be in my mind at the moment, scattered, yet organized chaos, and a plan all in one.

Teddy Bear Factory Trip!

That leaves me the story of Jess, my Aussie hip sister’s arrival in America to begin her three week trip with me. In three weeks we will have been in 2 countries and 5 states. Spending a bit of time in each area. July 4th evening I was at a friends house for dinner where two of my lovely high school friends cooked dinner for me in congratulations of the Today Show and also in celebration of the forth of July. Dinner was scrumptious and of course in wonderful company with two very loved friends. From there I went to the airport to pick up Jess. Now, jess and I met online because of our hip injuries and since meeting and sharing our life experience stories we have spent hours nearly every night talking. Sometimes we can go for a good 5 or 6 hours straight and then continue to talk even the next night! This meeting in the airport in the United States would be our very first in person meeting. Due to Skype, we were well aware of what the other looked like and how they talked and sounded but it is much different to have an actual living, breathing hip sister in front of you rather than a computer screen.

I sat there in the airport with my Mom who had come along for the ride and to help with Jess’ luggage, eagerly watching the time

Jess and I in Old Montreal

which didn’t seem to move. I was looking to my right when from my left I hear “Em! Em! EM!!!” which didn’t qute register with me because it was too early. Finally when it was loud and next to me I turned around and sure enough it was Jess!! With the screams and the hugs I think the whole airport knew how important this meeting was. I could not be happier as I was finally meeting one of the people who has spent hours working through things with me whether laughing or crying and one of the people who has been key in my hip journey. I was meeting my older hip sister as we call them (I have three friends from this hip journey all of whom are very special to me and I know I would not be going through this hip journey the same without any of them. Quite honestly I couldn’t do it without them.

So there were Jess and I screaming, laughing, and near tears of happiness in the airport without a care in the world for anyone else around us. This has got to be the high point of both our years. That day would be the start of 3 weeks… but I’ll have to share some of those adventures with you

Here it is… 2 years post hip surgery #2 (first on the left side) you can see one of the portals on the side in this pic from that initial surgery. Otherwise that scar is 42 weeks post op from my Anteverted L PAO… can you believe its almost a year?!

all later as time goes on. Its been 5 days and already we have done so much!

Well everyone, I guess this is it for now. Its Monday July 9th, which is actually 2 years to the date of the first surgery on my left hip (my second hip surgery ever which occurred on July 9, 2010). Its crazy to think that it has been that long and that this struggle, this battle, has been drawn out for that period of time and still has no light at the end of the tunnel. I am still on crutches, I am still in pain, but I am still fighting. I’ve got to go for now since I have PT in a bit and then a whole day of adventures ahead of me … happy Monday everyone!!

A day in Old Montreal with my Aunt and Jess… we found an appropriate statue!

Having a bit of fun with statue imitations.

Sugarland: Something More

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , ,

Saturday I slept all day. Believe me, in a post concussive state it is not that hard to sleep all night and all day; in fact it is just about the only thing one wants to do in that situation. Saturday night however was a different story as I had a source of excitement that would successfully keep me awake and not only that but alert, smiling and laughing. That afternoon at about 3 pm we left on a two hour drive to Gilford to attend the Sugarland concert that evening, which I may add was more than worth it; it was phenomenal.

This would be my first Sugarland concert, but I have been a Sugarland fan for many many years, and believe it or not this actually relates to my hip story. There is something about Jennifer Nettles and the lyrics to her pieces that seem to go right along with the story of my life. Why? I have no idea, though I have a sneaky suspicion that I am not the only one who can relate so well! At almost every point in my hip journey I have played at least one or more Sugarland songs over and over again whether it just went along with my mood, or it somehow comforted me, it served a purpose in some way shape or form. In my opinion the perfect song not only has a good catchy beat with well written lyrics, but it is also relatable in the average persons life; for me this defines Sugarland.

Dinner in the car

On this past sunny Saturday evening we had a casual dinner of turkey sandwiches, with a side of cucumbers, and sugar snap peas while sitting in the car, which was parked in a field type area. It was cute though with trees and white picket fences; almost with the feeling of a campground. I was beyond excited for the concert despite the pounding that was going on in my head from the car ride, sitting in the sun, and simply just from being awake (the joys of a concussion). We had prime parking meaning that we had a relatively short walk down a paved road to get to the entrance of the pavilion area. This was important since rolling a wheelchair across a field of dirt would have been a little too much adventure for me. With dinner finished and the clock time just after 6 15 we decided that we could walk up and go check out what was going on inside the gates before taking our seats in the pavilion. I grabbed the tickets as well as my sweatshirt, phone and camera, and we were off.

I was able to wheel myself the entire way since it was relatively flat with only gradual ups and downs. My hips were definitely glad to not be weight bearing at all since it had been a rough week in general following the accident. Nothing all that eventful happened leading up to the concert, except for the fact that I talked with a few fellow “wounded” and made them feel better (unintentionally) about their own situations. One was a woman who had just had an ACL repair and would be spending 6 weeks on crutches and the other was a younger girl who had a sprained ankle, and would be on crutches for 1-2 weeks at her discretion. I wished them both luck, whole heartedly of course, but part of me was wishing that I was in a situation where I could tell you I had x number of weeks left on crutches!

In the pavilion our seats were fantastic, in the third row with a great view of the stage. I couldn’t believe how close we were and how

Pre Show… look how close!

clearly we were going to be able to see one of my favorite groups. It’s been a while since I had something to be excited about, and this concert was definitely an exception.  A drum was placed center stage and Jennifer Nettles came out with Kristian Bush to begin the show with a strong and steady beat on that drum, glitter flying. Wide Open was her opening song, which I think the lyrics speak for themselves.

Ive been waiting my whole life betting on a change
See it coming getting better getting better now
Feel the shake shake steady of a soul to the flame

Wide wide wide wide open
And its a fine fine fine fine world
And this is my my life I’m hoping
Will be a fine fine fine fine world

Every life has a moment where sweat meets fate
On your mark get ready get ready now
Gonna find out fast what a heart can take

Jennifer has such a “go getter” no fear approach to her singing. Her unique sound makes it perfect, and her personality if unmatched by many performers. Its incredible to watch her and Kristian perform because they seem to be always loving sharing shat they do best with the audience.  Kristian’s love of playing shines through in every note that he plays. There is such a genuine feel t their performance that its hard not to smile and get wrapped right into the show.

Another song they sang, called “Little Miss,” I have shared in a previous post. This song is one that I frequently have on repeat as I listen to it and I feel as though I can relate to each and every line. This is my go to song in the good times and the bad, and it never fails to calm me down or make me smile.

Little miss, do your best
Little miss, never rest
Little miss, be my guest, I’ll make more anytime that it runs out
Little miss, you’ll go far
Little miss, hide your scars
Little miss, who you are is so much more than you like to talk about

I had a good laugh as I was listening to her perform “It Happens,” and I didn’t realize that in this song there is a part about a truck. This made me laugh with my recent incident of passing out. It is not exactly like mine, but in the context of the entire song I could not help but crack up when I heard it. I have heard this song many times, but this just did not register with me!

Well that yellow light turned red too quickly
Knew that truck, the moment it hit me

But it’s poor me, why me, oh me, borin’
The same old worn out blah blah story
There’s no good explanation at all

Ain’t no rhyme or reason
No complicated meanin’
Ain’t no need to over think it
Let go laughin’
Life don’t go
Quite like you plan it
We try so, hard to understand it
The irrefutable, indisputable fact is
It happens

I could go on with songs from this performance forever, but I will finish with her encore song, which was “Something More” and I think that this song speaks volumes about what we all hope for in life, what we all strive for, even though rarely do we ever know quite what we are looking for.

Monday, hard to wake up
Fill my coffee cup, I’m out the door
Yeah, the freeway’s standing still today
It’s gonna make me late, and thats for sure


I’m running out of gas and out of time
Never gonna make it there by nine
There’s gotta be something more
Gotta be more than this
I need a little less hard time
I need a little more bliss
I’m gonna take my chances
Taking any chance I might
Find what I’m looking for
There’s gotta be something more
….


Some believe in destiny, and some believe in fate
I believe that happiness is something we create
You best belive that I’m not gonna wait
‘Cause there’s gotta be something more

By the end of that concert, my right hip was so sore, and screaming in pain, my head was pounding, but it was worth each and every moment. That night out was one that I needed. As I said, Sugarland is the artist whose music I turn to with almost every event in my life. Music is a part of me that gives me the extra push to get through everything and has even before all this hip stuff started. I had a really rough night sleeping Saturday night with the pain in my hips and the continuation of breathing issues, but it all mattered so much less as I had just had one incredible night enjoying the unmatched performance of one of my favorite groups Sugarland. Thanks for giving me that extra push in the good, bad, and ever so complicated times!

 

 

Shake It Out

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , ,

Its been a rough couple of days to say the least, or rather this week was simply a rough week. I have been from the highs to the lows trying to keep myself as level headed as possible, which is something that my surgeon and I have worked on as this journey has continued over the years. This weeks roller coaster ride though threw me for a loop, and I think that the lows were a bit too low.

I’ve been a bit hooked on a song the past few days as things were not going right, and I am not sure if its because I connect to it, and am desperately searching for something to connect to; something that can not tell me how to feel but rather just relates to and understands how I feel. I do not need to be molded into a perfect box of symptoms and feelings that fit a particular idea. That is not how the world works; it is not textbook but rather is full of all sorts of uncertainties and patterns that for some reason or another just don’t seem to fit.

And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my rope
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark aimed right at my throat
Cause looking for heaven, found the devil in me
Looking for heaven, found the devil in me
Well what the hell I’m gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh whoa
Shake it out, shake it out, shake it out, shake it out, ooh whoa
And it’s hard to dance with a devil on your back
So shake him off, oh whoa

Lyrics- a portion from Shake it Out, Florence and the Machine.

Sometimes I find that songs written for one reason can be interpreted by their listener for another. I have been thinking a lot about the concept ‘damned if I do and damned if I don’t’ over the past few days. I have thought about how resilience is usually a very good thing and pulls us through situations that we could never imagine we could conquer. I find that resilience is what allows us to tie a knot at the end of our rope, hang on tight and swing; thus the journey continues. In order to continue hope must be present, even if it is just a small flicker in the midst of the encumbering darkness. However, with hope and struggle, comes suffering, which can be overcome with the help resilience.

To be resilient, I find that it is necessary to realize that we have minimal control over difficult situations, except for our choice of attitude. A crappy situation does not mean that we need to be angry or upset towards everyone who talks to us. Rather I find that days are more enjoyable when we let go of these feelings, express them when needed, but then realize that the best thing we can do is to acknowledge them (being cautious not to push them entirely aside) and put the energy into the brighter aspects of our day. For example, I can not do anything active like running, skiing, and dancing and although nothing can replace them, I find ways to be involved despite a disability. This could be as simple as critiquing a dance, or taking part in supporting a friend in a road race. It is important to shake it out, move on, and see the glass as half full while keeping reality in full view.

On a brighter note, I have had several cake orders to fill over the past few days (which added to the chaos of my medical schedule but oh well!) with a few blunders along the way. One order I had consisted of two cakes, one square and one round, with one of these a white cake layered with raspberry and the other a carrot cake. I baked them Thursday, only to be sitting on the floor late Friday night after my Aunt’s 40th birthday party and to some reason realize I reversed the shapes!! I have no idea why I realized this when I was not even looking at the cakes or working on them. The cakes were due the next day (Saturday) at 3 pm and I had planned on getting up around 5 am to make sure that I had ample time to build them and decorate (thankfully they were very simple buttercream decorated cakes, nothing too fancy). When I realized that I had reversed the shapes however, I had to do more baking. I had already been awake for over 24 hours, and I realized that I was going to have to re- bake new cakes and have them decorated by Saturday afternoon; that meant I was going to be up for another 24+ hours.

Long story short, I watched the sun set Friday night, and rise Saturday morning as I worked away on these cakes, and after a few other minor dilemmas along the way they were finished on time for the customer to pick them up Saturday afternoon. My hips are stiff, sore and in more pain than those two cakes are worth.

My favorite moment of the past few days though is my Aunt’s cake. She is a very special person to me and I wanted the cake to have some meaning. A while back I made a topsy turvy cake (one that looks like its off kilter and unbalanced) and she always seems to mention this cake when we discuss the decorating jobs I have done. I decided that this would be the design for her birthday cake shape, and then I set to sketching what I wanted the decorations to look like. In the end after a few hours of fretting over something that was fun yet organized, I came up with the idea of making the top tier into a present (since it was after all her 40th birthday) and then the bottom tear would have the theme of a flower garden since her plants and flowers are part of her pride and joy. I was unsure how this was going to turn out, but in the end I can say that I was quite pleased! Pounding fondant was also excellent therapy with my difficult roller coaster ride during the week! There is nothing like having a baking therapy outlet! Everyone else seemed to enjoy it too, even the birthday girl!

Tuesday (two days from now), I go to pick up my AFO that I got molded for this past week, and to have the final few adjustments made. Then after that I head over to the hospital to see my surgeon. I certainly have a list of questions that I would like to go over, as usual; it seems my mind never stops brainstorming and thinking about what I would like to know from my surgeon regarding this hip journey. Until then, I will leave you with pictures from my Aunt’s birthday cake. Shake it out, when nothing seems to go your way, when the tables seem to turn, when the roller coater gets too hard to handle. Shake it out, no matter how bleak a situation may seem, but always keep reality in plain sight. It is important to acknowledge the situation and our feelings, but to not allow them to get the best of us. Shake it out.