Tag Archives: fear

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).

Commitment

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

Funny word, commitment, that is; what the heck does it mean, what role does it play in our society? How important is “commitment” to our daily lives. Where do we see it in society? In my hip case? There are several different meanings listed in Webster’s dictionary… but heres what I am choosing to go with (even though I don’t think it quite covers everything that I need it to).

Commitment: (Noun): a: something pledged b: the state or instance of being obligated or emotionally impelled <a commitment to a cause>

program from I AM

program from I AM

So that my friends is what the dictionary came up with and I am not in the slightest happy with it but what can I do? So now taking that into consideration, where has commitment come up in the past few days of my life; both in the things I have done and especially with my hip journey?

Friday night I attended a dance performance called “I Am” presented by The Gold School, along with a good friend of mine. I also knew several of the kids performing on stage. It was all about where being yourself is enough. This is a more powerful message than I think people realize. It does not only encompass bullying, and people who simply don’t fit society’s “normal” but also people with disabilities, or people who appear ok on the outside but are suffering inside. The performance was powerful in more ways than one and brought me to tears at time. Part of that being that I can no longer dance like that anymore, but also because the dancers were so committed to every move AND emotion, it made it sincere and believable. It didn’t matter if they made a wrong step, they made it seem right; everything from the choreography to the dancers execution seemed deliberate and done from the heart. They committed to the music, the audience, themselves and the movement, and in then end produced a very powerful stage production.

A group shot of Panache

A group shot of Panache

This story of commitment in performance extends further as I look at my brother’s show choir competition performance on Saturday evening. I had the priviledge to get to watch about 8 groups that evening and stay to watch as the group won yet another grand championship title. It was a special year as every group has clearly raised the bar and made the competition tight. My brother’s high school director continued to take a very traditional route and truly teach the kids the meaning of commitment to your movement, the pit band and your audience. Their school is very well known for their show choir (which many of us have been proud to be a part of, myself included) and I was beaming with pride to see my brother up there on stage dancing and singing his heart out. The group had just learned the choreography a few weeks before as they hit a bit of a snag this year but you would have never known it. They committed to every move, every note, and at times I needed the pit to just commit to the tempo and stick with it (the dancers will keep up!) but every member whether, director, assistant, or pit member was fully committed and it showed and ended up with them being awarded best vocals, best choreography and over all winning the grand championship. To my brother, I am so VERY proud of you and I hope that you remember that incredible feeling of being so tied in and committed to the music and the stage; the high that it gives you and the satisfaction. You continue to make me so very very proud.

My awesome little brother!! And the fantastic Show Choir and Pit Band Panache!... see more pics below!

My awesome little brother!! And the fantastic Show Choir and Pit Band Panache!… see more pics below!

The final event in my weekend (which was absolutely insane and took a toll on my right hip BIG time since it is still struggling IMG_2808under the stress of having to take on all my daily activities) was the collegiate a cappella competition hosted by WERS at Emerson College in Boston. It was a fantastic afternoon with some wonderful people and some great entertainment. There are no instruments to back them up, no one swaying in the background to provide a distraction, so no matter how complex or simple the arrangements were, or the choreography everyone had to commit in order to make each piece work. Some groups were definitely better at this than others. When someone doesn’t commit or wavers on a note or step it definitely throws the entire group off. I think that along with commitment, comes confidence in what you are doing, whether that be singing or dancing, or simply a direction that you are walking, or a choice that you are making. Which brings me to the next order of business here….

Where does all this talk of commitment come in with my hip journey? I am sure that a lot of you are actually thinking that everything with my case has been quite the opposite. Well to be honest from day one we have been committed… to finding a way to get my hips functional and livable (if you will) so that I could move forward without pain and dysfunction. We have remained committed to that, clearly, since my surgeon and I are both still here working on it. Every surgery that we have done, no matter how difficult the decision, or how many times it was postponed for whatever reason, we remained committed to completing that next step in my hip journey. So what about now you say? Well, it’s a bit more complicated. We want something tangible, something that is an answer to the situation; problem is this may never happen no matter how long we look for it. We want to make a choice and commit to it, but this is not exactly a scenario in which we can do that. The commitment now becomes one of not giving up, not letting this beat me no matter what the outcome. It is now a promise to get me to a point where I am as functional as I can be; what that looks like, well that we are not quite sure of.

I met with my surgeon today, which yes, its talking through more of this, looking at the clinical presentation of everything and trying to follow it closely, and yeah sometimes I am sure that no one understands why we keep talking in circles on these things. Honestly, its cause we (my surgeon and I) are both paralyzed when it comes to making a definite decision, a commitment to the path that we are going to take, because neither is supported with a tangible reason. I think in general, as a society, we like things that are tangible, we like to have answers; so for all of you who want a reply as to what our decision is this is what I can offer you: For the time being (meaning not definitive, but the current decision based on what we have right now), we are deciding to leave my left hip alone and to continue to watch closely. The approach that we are taking is that if you don’t know (to operate or not) you are more often than not better off doing nothing. This does not mean that not operating is going to yield a favorable outcome. So where does commitment come in here? Well, it’s a commitment to still searching in every corner we can for more possibilities, for answers, for something that will let our minds rest a little. It’s a commitment to continuing to seek out the advice of other neurologists and physiologists and an agreement, that as long as I don’t give up, my surgeon wont, and vice versa. As my surgeon said to me today, I made you a promise, and I am going to keep that promise. Our commitment, lays in that promise, as we work towards finding a reasonable level of functionality for me.

This is an extremely gray situation, and I firmly believe that my surgeon and I are the two people who know the true magnitude of that gray area (yes I know there are others who understand quite a bit of it), and in this I ask that people remain patient with us. There is a decision, for now, we are not going in for the time being. We have chosen our tempo, so to speak, our note to sing and we have to commit to that until the tempo changes, until something new comes to light. We as the surgeon and patient need to adjust constantly to the different decisions that we make. Any answer, whether hard or easy to swallow, would greatly improve our ability to deal with the scenario that lies in front of us. Problem is we don’t have that, which makes this current decision incredibly hard to deal with. I am still processing what’s going on, the promise that we are upholding and what is to come in the next week, the next month, the next year. This is far from over, in many ways it is a new chapter starting, one that is no easier than the last.

I meet with my surgeon as well as the neurologist on my case this coming Thursday and I know that both my surgeon and I have a slew of questions to bring to this meeting as well as presenting her with our current position on the decision that has been made and where we need to go from here. I am confused, lost, frustrated, hurt, upset, scared, nervous and honestly just trying to figure out how to keep moving, how to not be beat by this.

I am committing to continuing to do everything that I can to help myself and the situation (as I have done in the past) and no matter how mentally and physically tired I am, I know that I have a choice and that if my surgeon is holding on to helping me, then I too must keep the faith, grab on to the end of my rope and hold on tight, as tight as I possibly can. Commitment, is a binding factor here, and I can break it or I can fight as hard as I possibly can to continue forward.

A shot from the second half of the show!

A shot from the second half of the show!

One of my favorite pictures! My neighbor, and long time friend is center!

One of my favorite pictures! My neighbor, and long time friend is center!

 

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

Catching Up (again)

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

Yet again I have fallen behind with my blog, but in all honesty the time this week flew by! I need an extra 24 hours on each of my days. At the same time though the days just seemed to drag on. Oh what a conundrum. Even this post alone was started on the 3rd and I have kept editing until finally today it is being posted (completely different from the way it started).

I spent much of my time catching up on emails, some journaling/ book writing, as well as catching up with a few people I have not seen in quite some time.  Of course torture hour (physical therapy) has become a regular part of my weekly schedule. I am lucky to be working with a therapist who knows me very well and has played one of the most important rolls in my journey through hip hell, as I am beginning to call it. We pulled back a bit after the first few sessions really had my hips screaming in pain.  This past week though went a bit better. We stuck to table exercises for the most part which seemed to help in the amount of pain I ended up in later. It still happened of course but not as bad.

The cake that was a fun afternoon with a good friend of mine for her daughter.

The cake that was a fun afternoon with a good friend of mine for her daughter.

Friday was one of the highlights of the week as I spent the majority of it helping/ teaching a friend about decorating an 8 inch round cake. It was her daughters birthday and the request was lime green, teal and brown with a theme of circles and flowers. I was flying by the seat of my pants so to speak, and brought with me a giant bowl of frosting and the three cakes all made up and ready to go (my Martha Stewart approved chocolate cake recipe). While making those cakes I ruined my phone case…. As chocolate spilled all over my phone and I tore it out in efforts to save my phone forgetting I was now ruining the case. Oops!! Anyhow so this was my project Friday and I had settled on making all different sized circles and using some fondant flowers that I had already made up. It was full of music, laughs and good times as I updated my friend on what happened Thursday. Which I suppose is a good segue into… what did happen Thursday?

It was definitely the hardest day of the week. I was following up with my surgeon which meant our debate and the difficult choices were going to have to be addressed whether I wanted to face them or not. The thing I have learned is that there is no point in worrying or stressing about it (this is not to say that I have completely figured out how to avoid that) since it is going to happen whether I want it to or not. Discussion are going to be difficult, choices are going to seem impossible and there is not a damn thing that I can do to change it. I was lucky and grateful to have my physical therapist with me Thursday for the first half going over where both hips are and the options that are in front of us.

My right one is fairly simple as usual. Same old same old with the ossification that is going on and the fact that between

Here is an update on how my right scar is looking. Pretty different from the left. (The right op was on 11/7/12)

Here is an update on how my right scar is looking. Pretty different from the left. (The right op was on 11/7/12)

the 3-6 month post surgical point it should make some big improvements as long as we push it. We got xrays that day which showed that the ossification is solidifying, and he said that it generally takes 6 months till it is done but that with its location it should be able to wait until we take my screws out to be removed. We will keep an eye on it.

The left is far more complicated and at this time I do not feel that I have enough to explain to you the thought process that is happening in anything shorter than a novel; therefore that is going to have to wait until I have a more straight forward explanation… either that or an answer.

In the mean time the weekend held some highs and lows and it was very hard to reach some sort of neutral emotion. The best thing that I did was design and decorate my mother’s 50th birthday cake. This is definitely an outlet for me, everything form stress, worry, frustration, sadness, it is all helped when I just focus all my energy into a cake. I plug in my iphone, flip it to a playlist and get to work covering myself in cornstarch and sugar, having a few flip outs and in the end usually creating what I envisioned or drew out. We had a lovely dinner out with family and friends and the cake garnered quite the reactions from several other parties gathered in the same room. Completing that cake was an accomplishment for the weekend.

The cake that I drew and then put together.

The cake that I drew and then put together.

I had good intentions for the week. Things planned to keep me busy and my mind diverted from my hips for the most part. I enjoyed a lovely dinner and a movie with my younger cousin on Monday night. But then Tuesday was a bit of a mess. I was scheduled in fairly last minute for an MRI to happen at midnight… and that was early this morning. This day has been longer than I can handle at this point. Its only Wednesday and I still have four more days to get through

Picture of my cousin and I at the movies for our fun night out!

Picture of my cousin and I at the movies for our fun night out!

until the start of next week. I am not sure at this point what I expect. I am not sure how to describe what is happening besides to say I am in over my head.

Yesterday (wednesday when this post should have gone up!), the MRI began my day from 12- 2 am and then I headed home and finally got to be by 3:30 am only for my alarm to go off at 7 am telling me that my day had to start whether I liked it or not. My hips were stiff and angry, not willing to cooperate no matter how much I wanted them to. That morning I had a podiatrist appointment, since my toes decided they wanted in on the process of torturing me like my hips. I of course beat up my toes along side my hips with all my years of dancing and my big toe with a lovely ingrown toe nail got really bad. It was time to do something about it. The Novocain going into my toe, was almost painless, which both the doctor and I found a bit funny. Usually people complain more, I had no problem with it at all. Hence started my frustration for the day with my left leg and all the issues that it has.  Without totally grossing you out, we bandaged up my big toe and I was sent on my way. Only problem with that was that my toe was too big in combination with the AFO on my left foot would not fit in a sneaker for PT. Wonderful. As usual I thought to myself, this is as good as the day is going to get– deal with it. You have to learn to make the most out of days that absolutely suck.

After all that though I had the opportunity to catch up a with a very good childhood friend of mine who was home from

Decorating the 50th birthday cake. (More pictures below)

Decorating the 50th birthday cake. (More pictures below)

England. I feel blessed that our coffee date turned into a 5 hour long and intriguing (but far from long enough) catch up. This definitely helped to at least end my horrible day on a high note. Its nice to know that she is always there, no matter if we are a path through the woods apart, or 3000 miles.

I think that’s good enough for today. Not really insightful, pretty factual, and honestly one damn boring blog. I shared more pictures below of some of the good things throughout the week. Hope you are all enjoying the snow as much as I am today!! I am taking a drive up to the clinic today… should be interesting and long. But I am glad that the world is again peaceful and covered in a blanket of white.

“I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstances, but by our disposition.”

- Martha Washington 

Trust Your Struggle

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

Well I have yet again let my blog run away from me. See I told you last time this was like the diet thing… where you tell yourself it will start tomorrow and then December 31st rolls around and you still havent started and say what the heck we will start next year. At least this time its only been a week. I will try to get back to my 2-3 posts a week… this is a start. Everything is slow getting back a semi normal state post surgically from the healing itself to getting back to a daily routine- all of it is just snail pase. My last post was on the 11th and I was going through a gastric emptying study that day basically to see if I was getting ill due to gastroparesis (slow emptying of the stomach) caused by the dilaudid that I am on for pain. Several other appointments have taken place in the past week as well. I feel like I still live at the hospital since I was there 3 out of 5 days this past week. It has certainly been a struggle as I have started dealing with meeting new doctors and getting my story to make sense to others. You would think I would be used to this by now, and yes its a bit easier but it never stops being a struggle.

As I am sure many of you noticed my communication has been taking a hit with all that has been happening; everything from my blog to letters to emails, im just slacking in all areas. It is hard to explain to people a situation where I myself have more questions than answers. Its also hard to process any additional information outside of this current issue. If I am in that position then what does that mean for the people that I tell the present predicament to? Do they have more questions for me that I can’t resolve for them? Do they just not understand the situation? Or do they just tell me what they wish would happen and we all move on? I dont know. So I am going to attempt to address the past week.

The stomach study is the easiest to explain. It came back with accelerated gastric emptying, which explains my low blood sugar, fatigue and spells of dizziness. I do not yet know what they are going to attribute this to since I have yet to speak at length with the GI. However this is where that stands, which in a way is good news because it means that the dilaudid is not causing a gastroparesis. Bad news is its completely the opposite of what we assumed. More to come on this after the follow up at the end of the month.

Next up, the first surgeon follow up on the 7th, followed by the EMG on the 8th. These were a while back now, but I was hoping by now (the 21st) I would have a little more supporting information; unfortunately thats not really the case. I have some but not really a substancial amount to make a difference in your understanding of what is going on. Monday the 7th was a pretty normal follow up where we talked about the progress that the right was making and checked out the xrays that were taken that day. The right hip is continuing to heal, although it still has a ways to go. It has a large H.O (heterotopic ossification) that is forming in a pretty troublesome spot where the extra bone growth could cause some major issues with the mechanics of my hip. Because of this, we need to watch the continued healing of my right hip closely so that the H.O does not go so far out of our control that it is hard to take care of whether that is shrinking it, or removing it entirely. An H.O is referring to bone that is forming in soft tissue structures where bone should not exist and depending on location can cause issues to the mechanics of the joint. There are several options to manage this, and treat it but my surgeon and I have not yet decided which option is going to be in my best interest as well as the most effective. Otherwise, the right hip is coming along slowly and at that point in time could take about 40% of my weight through it with tolerable pain. It is far from pain free at this point in time. Another topic addressed was my left hip and limb which is not quite responding well in terms of the neuromuscular rehabilitation. In the middle of the appointment my surgeon ended up walking over to the neurology department and getting an EMG scheduled in for the next day. This is pretty much how my life tends to work; my schedule is made for me medically and I work my social life around that. Its a bit reversed, but the medical events are more common than social so I suppose it makes sense. Although not favorable.

The EMG was done the next day, Tuesday January 8th, at the clinic but the results were not quite what we were hoping for. That night my surgeon emailed me that nothing had changed on the EMG and we were going to have to have a long serious conversation on what this meant for my hip and the expected outcome. Just so that you understand the magnitude of that result, it was instant tears upon reading that email that night and my surgeon and I decided that we would be meeting on Friday (since I was already at the hospital for my gastric study) to discuss this.

Friday could not come soon enough. When events like this happen it becomes very hard for me to get the wheels in my head to stop spinning; they get faster and faster as the days go on and eventually I end up in a mess of thoughts and fears. It often will get to the point where I have so many different things in my head I can not quite seem to form questions or thoughts. When I finally made it to friday (it was only 3 days but it seemed as though it was so much more) I was more than ready to start talking about some of this with my surgeon but I had to wait all day through the gastric study until I was going to get to sit down with him over this one. For those of you who have never been through a gastric study, it is not exactly the most eventful, or distracting of tests. You eat radioactive eggs and toast, which are the objects that they are going to trace through your system, and then over the course of 5 hours they take a 2 minute picture each hour. What do you do inbetween? You guessed it… you sit and wait and entertain yourself… in my case that was thoughts of all the things my surgeon and I needed to address that evening. Thankfully I had a friend with me, who I have found is more similar to myself than I even knew possible. We had quite the day getting to know each other, coloring, and honestly just enjoying the company. Unfortunately the day did not end on a high note.

The evening of the 8th I sat down with my surgeon for a few hours ready to discuss the situation that my left hip was in.

This happened to be on my napkin at lunch one of the days that I met with my surgeon and realized things were going to again go a different direction than I wanted.

This happened to be on my napkin at lunch one of the days that I met with my surgeon and realized things were going to again go a different direction than I wanted.

It is hard to find the words to explain to you what happened. The results of the EMG were unchanged from 6 months ago, yet we seem to have hit a wall with my left leg about 4 months ago, with no improvement since. There is no sign of improvement, or decline, but thats not exactly good news. It takes a few of the options to try to repair my left leg off the table and leaves us with even fewer options, one of those being saying that this is it, theres nothing else that can be done for that leg. At this point in time I do not have a completely functional quad, it is missing the terminal extension and is very weak, and I have no dorsiflexion (pulling your toes up toward you) with minimal plantar flexion (pointing foot down). In order to work on weight bearing and walking at the moment my left leg is in an AFO and a knee brace that locks my knee back in extension. This is just not ideal, or truly functional, and its a limitation that is impeding both the recovery of the right, and the eventual outcome that we can assume for the future. Put bluntly… walking without crutches, or an assistive device is no longer a guarantee. I couldn’t stop the flood of tears that came next. I cried so hard that I ended up just curled up and shaking, tears streaming, unable to take a enough air in to be able to say anything. This isn’t a time to say it could be worse, its not a time to tell me that new advances could come along, all I needed was someone to just be there with me, someone who understood the emotions that I was going through. I told my surgeon that I didn’t want to give up, I did not want to say we were done, until we had exhausted every option, but I think in reality I did not want to face that we may be out of options. I think my surgeon put it best, this is terrifying, and upsetting for us both because we are reaching an end point long before either of us wants one. There is far more information to gather on this, and to share, I am just not sure how to tell you all at the moment in words written into sentences. Those sentences are just not forming in my head as I still am trying to process everything. I came out of that appointment and cried into the arms of my friend who had come around the corner and immediately knew that nothing had to be said, all I needed was a person to hold me tight and let me know I was not going to be doing this alone. I guess you could see her actions as symbolic of those reaching out to help me right now.

With those developments the week of the 7th, my surgeon decided that we needed to talk with the neurologist who did my EMG and see if she was willing to get involved. He discussed my case from start to finish with her and the problems that we had along the way and those that exist now; to our relief she understood, and started to put some pieces to together. She and my surgeon have begun to put their heads together on what could be causing the dysfunction of my left limb and exploring what options are left or those that we have yet to find. A new pair of eyes will sometimes bring to light some of those options that have eluded us up till now.

This neurologist wanted to see me in clinic and she setup an appointment this past week. I saw her on the 17th, and we went through my case then scheduled a few diagnostic tests. She tested the strength in both legs, proving that the left is considerably weaker than the right even though the right is my most recently operated hip and also showing that I have less control in my left. Response to temperature, pain, and vibration are all decreased in the left compared to the right. She talked to me about how we need to determine if this is a peripheral neuropraxia or if it is a central nervous system issue, which it is presenting more like a CNS issue. There are no conclusions on this yet. She decided that we would re-run the MRI of my brain and spine since it had been a year and she wants to look for any changes. This is being done tomorrow (the 22nd) and then I follow up with her two weeks later. She asked me if I was ready to really aggressively go after this trying to figure out what it was. With walking at stake? Absolutely.

That afternoon I saw my surgeon again to discuss where this was going, and what the neurologist and I had talked about. I kept myself composed and tried to keep my thinking straight forward. However, I left that appointment feeling like I needed to burst. I was (and am) still so confused on everything that is happening, again still in a state where I have more questions than answers. Its hard to even write to all of you on this today.

Came across this one day, and was reminded of something that I often forget.

Came across this one day, and was reminded of something that I often forget.

I didn’t expect to face this much of a struggle after my right hip surgery. I knew it would be hard, but neither my surgeon or I wanted to imagine a worse case scenario with my left, where it lacked any improvement. I often pray that I have help getting through my journey, no matter how hard the struggles are that I face. I have learned not to pray for a specific outcome because my wants are not going to be answered, unless they are the same as my needs. In life we are often given what we need, and not so much what we want. I have found this to be true, and it was a strange coincidence that this was also part of the homily at mass yesterday. My point here is Trust Your Struggle, no matter what it brings. All the events that I outlined above are completely unexpected and undesired but there is a reason behind it. With all I have been through I often lose sight of where I am going and the fact that I need to trust my struggle, trust the journey that I am on. I have my doubts at times, but the important thing is that I never completely lose sight of it.

Now that I’ve completed my “short scattered thought novel” here (i’ve got to write more often to keep the length down), I suppose that I should let you get back to your day. Its actually doubtful that many of you even had time to read this and even if you did I did not really give anything straight forward. I am sure that some of you have many of the same questions as myself with all of this stuff. Just as I am telling myself at the moment, try not to make assumptions and just hang in here with me on this one, and as I figure out how to share things I will. I saw pain management this morning and have another follow up with my surgeon today to continue our discussion in attempts to find the next path we should go down. After waking up around 4:30 am this morning, this definitely feels like a Monday… my hips are going to be so glad to crash tonight!

Upcoming (and a few already happened) Events in my journey:

January 17: New Neurologist (same one who did the EMG)

January 17: Surgeon F/U 

January 18: Primary Care (GIM) at hospital

January 21: Pain Management

January 21: Surgeon F/U

January 22: MRI- Brain and Spinal Cord

January 31: GI F/U post Gastric Study

February 4: Neurologist- MRI F/U

February 12: X-Rays and Surgeon F/U

February 18: Pain Management F/U

TBA- (hopefully in Jan) Ultrasound of Hips

Im Only Human

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

I headed out the same day I wrote this and photographed the leaves… Its something I can still do while on crutches for the most part.

This is a post that I had intended to put up yesterday (Tuesday) but was running around trying to get some last minute things done. It is important to me that this one is read and shared, as I think it is the biggest glimpse I will have given into what is going through my mind sometimes.

I am strong. I am confident. I am strong willed, and I have a heck of a lot of determination. I have the ability to put a smile on my face and go out almost every day, and I have the ability to overcome my limitations and make my life as functional as is possible given the circumstances. I think that there is a vulnerability in this, something that makes me and everyone else who has their days distinctly human. Living a “normal” everyday life people can’t seem to hold it together 100% of the time, so given circumstances like mine how can it be expected that I can do that. I try to keep the glass half full, to give you a glimpse into the good days and the bad days, but I don’t go very far below the surface and the reason is quite simple: its far too complicated and twisted to put into words. Several friends and family members have asked me lately why I don’t put everything down in my blog… cripe if I did we would be here for the next year reading a ten part novel series! Give something more raw, more human, that I can do. Here are my thoughts leading up to this surgery… what runs through my head beneath the smile on my face yesterday (Monday)…

I toss my crutches into the passenger seat of the car and slip into my car butt first helping my left leg along, but trying to

My surgeon challenged me to design an orthopedic cake. This is what I came up with and told him that once I can stand on my own two feet, then I will actually create it.

let it do as much of the work as it possibly can. Turning the car keys and putting the car into reverse I back out of the driveway and start the drive to the clinic. Freedom. I can get myself from place to place on my own, without interrupting anyone else’s day. There is something to be said about that. Then this surgery is going to happen and crutches are going to be out of the picture for a bit. Even just showering this morning I thought to myself I only get 2 more showers after this that I can do by myself. And then I get washed up when someone else has time, and for a few weeks don’t even get to shower. The independence that we as people take for granted everyday is gone and its going to be this way for weeks. That’s a fact, not a grim outlook, not negativity, but a fact of what I am about to enter into. Im going to be on others time, not my own.

So what does the typical spur of the moment thought process look like? I can give you an idea…. It may look something like this as I write it down…

A very common question I get is… “how are you still smiling on crutches”
And my reply will often be some variation of…. because this is life and it’s what I was given, it’s the hand I was dealt and I have to take them as they come moment by moment. I have my bad days too, I just don’t always let it show.
This one question provokes a lot of thoughts, especially recently with the upcoming surgery and all my fears.
I have my bad days too
But the thing is everyday can not be a bad one, it terms of attitude
That I can control.
One of the big issues with this journey is loss of control
Feeling like you are spiraling with nothing to grasp on to
But attitude, that can be controlled, the way I see things, the way I chose to live my day.
Im often asked how I keep such a positive outlook.
Its not so much how, as that’s what I choose
I am what I like to think of as a realistic optimist, things are not painted rosy, but not overly cloudy either, you take whats in front of you and you make something of it
But at the end of the day I am HUMAN
I am not superwoman,
Nor do I pretend to be
And I cry
Quite a bit actually
How can I not?
Every human needs a release
I just don’t let it go in-front of others too often
And I breakdown
With many things I breakdown,
But again I can control my attitude, how I take it
Do not mistake attitude for emotion, they are not one in the same.
At the end of the week, or the day or the hour the point is that I pick myself up again
And I continue on being me;
Cause if I am no longer me and don’t have any of ‘me’ left,
Then what am I?
The strange thing about this journey is that I feel like I am losing myself,
As though I am slipping away…
At the same time,
I feel like I have never known myself better, never been more in-tune with ‘me’
This journey sucks.
And it scares the shit out of me.
I have experienced emotions that I have never had before
And I cant even describe half of them to you
And just when I think I have experienced each of them on this journey…
I find new ones
And worse ones
Or the ones that I already knew intensify and get worse.
The hardest cry, is never the hardest cry
And the hardest piece of news is never the hardest news.
There are things around every corner that take me by surprise, day in and day out
Just when you think you hit rock bottom
You fall further.
It does not get easier,
On the contrary it hurts more every single time.
I feel as though I am knocked down by the waves, tumbled
Over and over and over again
Never getting a breath of fresh air
Being dragged out to sea and the further I get from the shore
The harder it is to see it exists
Something that grounds me becomes harder to grasp
But I find it
That is how I hold on,
Every time I feel myself drifting, I find a lighthouse
Oh come on Em, stop it with the analogies and get on with your thoughts
I pull it together, I put on a smile and I truly mean that smile
As I go out talking to people I am genuine in everything that I do
Some days though it takes a lot more effort to reach that point
Through this I have learned more about who I am
What I need
What I expect from myself
And how I cope
How I pull through
And I realize that this is different for every person
No one can tell me how to get through and what works for me may not work for another
I’ve tried to find a purpose
But there is not just one, rather many
I live each day by the hour, rarely can anything be planned out
Things get scheduled too fast
I have learned a lot about people
People in general
How we react to things
How the spectrum of human emotion is ever reaching
And often uncontrollable
My surgeon has said there are two types of people in the world
critics and play writes,
and I am learning just what he meant
Without this journey I never would have spoken to people that barely spoke to me in high school
Or folks that I have never met before
Some of these people have done things for me that amaze me
In fact many people on this journey have
Many of them unexpected
Yet always welcome
I have had and continue to have the chance to inspire
And be told that I inspire
To reach out and have an impact on those around me each and every day
That is a gift that I am thankful for everyday
And to know that along the way my daily pain and struggles help others
And hurt me.
But then they help me somewhere down the line too.
I am hurt,
I am beaten,
And I am knocked down.
I am living a life that I never wanted to experience
And never could have imagined
But I have made friends with perseverance,
With hope
And with diligence.
I keep going, no matter how much it hurts
And sometimes,
Sometimes it’s the little things in my day, even if just for a minute
That make things ok and let me keep going.
It could simply be a smile
Or it could be a conversation with my surgeon
Or a friend
Sometimes the days are so long and mentally and physical painful
That I cry from exhaustion
Looking for somewhere to turn
And you just wait and hope
That someday you’ll weather the storm and make it through
I am grateful for the people that have come along with me for the journey
It is far from over.
This journey,
Its killed a lot of hopes and dreams,
But its also fueled some that were sitting in the background
Waiting to be found.
I’ve struggled each semester to try to pick up again to start up.
And then I have to pull out either because something unplanned happened or surgery is scheduled
But I worked hard the first 4 semesters
Few people know how hard it is to go to school on narcotics
And to add to that
They don’t take away all of your pain
They do not take away the struggle
In fact
In some ways
They add to it, making it worse, like adding fuel to a fire
School becomes a huge challenge as you try to function in a fog
I tried, until it was no longer plausible.
I thrive off school
I will get back
But right now im on a hiatus to try to achieve the function of walking again
And before that,
Simply being able to sit in a chair with out pain.
My surgeon often tells me that I am a really really good kid, a sweet kid and I have not done anything wrong that caused this and then he said that I am smart and that I have a greater purpose
He follows up with,
“do you understand me?”
and I don’t know what to say
because me,
I don’t understand
Because to me,
I am just being me
I am being who I am inside and not trying to fight it
I am not trying to be anything else
I am going to try to do this semester in the spring
It might work
It might not
But the funny thing about the world, is you never know until you try.
So here we go…
Its go time, my surgeon would say, its go time.
Wednesday is going to come
And its going to go
And there will be no looking back
First I am going to fall sharply downhill
And then have an uphill climb,
But
Through it all I am working to many small goals
We will fight it together
I am not alone.
Whatever happens, I’ll live and work with the outcome
The degree of uncertainty is almost uncanny,
Its unpleasant
And its oh so difficult and uncomfortable
That often times you just search for the answers just to catch your breate and make sure that everyone is still with you
But if things are never difficult, never uncomfortable
Then how do you grow?
How do you learn?
I have a long long long road ahead of me
That I think few people fully understand the magnitude of
I am scared out of my mind
Its not wise to tell me otherwise cause I truly am feeling that emotion of fear
And as my surgeon says, I should.
It all wears on me
I am exhausted
But I also am a strong willed, determined, type A…
And life
It has to keep going
You learn that there is very little to complain about in life
There are things that will frustrate you
And make you angry
But few things to make a genuine complaint.
There is a lesson to be learned from two walking feet..
The one that is in front has no pride
And the one that is behind has no shame
For they both know that their situation will change
I wish I could say I came up with that
But I didn’t
Its something though that I think about constantly
One piece of news, one event
It can change a lot
It can change a whole approach
In my case we have experienced complications and choices we (my surgeon and I)
Never expected.
I know this will change
This spot I am in now it is not forever
But its been one heck of a journey, and its far from over
I have not followed a typical PAO course
And it sucks to be that person
But its also enlightening
At the end of the day though…
I allow myself to cry
to be upset sometimes,
to smile through pain and tears and joy
To appreciate the little things
And always remember
To breathe,
Im human, not superwoman.
Wednesday’s reverse PAO…. Its go time!

Meet Sandy: The Hurricane

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

For all of you who don’t live on the east coast of the US or haven’t seen the news on it Sand is this giant storm that extends from Bermuda all the way up to Canada. Insanity. People have termed it “frankenstorm” since it is coming right around Halloween, but quite frankly I don’t care how big it is; it has my surgeon stranded on the west coast and surgery postponed… AGAIN. This of course means that there is one very unhappy hip patient here.

This is not cool.

My surgeon, stuck out on the west coast, is unable to fly back over here to the east coast and therefore will not be back in time for tomorrow’s surgery. It is doubtful that he would even get in on time to push it to Wednesday. So we had the options of Monday or Wednesday next week both of which days the neuromonitoring people were available to be there. He was willing to move cases on Monday to make that day work but the problem with Monday is that he was going to be an hour away on Tuesday and that worried me way too much for the day after surgery. He said that Wednesday would be the better day of the two to pick anyways. So after many emails and phone conversations we landed on next Wednesday at our next attempt at this surgery. WEDNESDAY NOVEMBER 7th is scheduled for the R reverse PAO.

We are certainly learning the many ways that a surgery can be cancelled or postponed he said, there is simply that we were not ready, the nerve issues, an infection and now inclement weather and a surgeon stuck all the way across the country. Its honestly unbelievable. I am not taking this well the waterworks are frequent and right on par with the rain in the storm. I have a few choice words for Sandy, lets just say that. Moving it even just a week is causing issues with holidays and all that sort of stuff; the situation just gets less optimal as we go. The days are long enough and a week in my world seems like a month. The struggle to keep going gets harder and harder. The fears get worse and worse.

I feel like I am being tossed in the waves, constantly being knocked down and never being allowed to come up for air just pulling me further and further out to sea no matter how hard I fight it. It gets harder to keep swimming as you lose sight of the shore until all of a sudden you cant see it anymore. The land seems to have been swept right out from beneath your feet. Im exhausted from the repeated poundings with no pause.

Apparently the 3rd time is not the charm.

Surgery Date: November 7th
Days Till Surgery: 9

Just to leave you with a better… glass half full type attitude on this dreary hurricane Sandy (im angry at you so watch out) day… I thought I’d share a few pictures from the pumpkin picking that my good friend Sarah and I did on Saturday…

On the hay ride to the pumpkin field

Our carved faces :)

 

The pumpkin patch

 

 

Third Times the Charm???

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

“Close your tired eyes, relaxing them.
Count from 1 to 10 and open them.
All these heavy thoughts will try to weigh you down, but not this time.

Way up in the air, you’re finally free, and you can stay up there, right next to me.
All this gravity will try to pull you down, but not this time.”

I sure hope that is the case. Surgery has been scheduled… officially… I’ve been juggling dates back and forth with my surgeon and we have finally landed on the day. I am almost jumping with joy… not quite… fear has certainly suppressed that emotion. We decided on a date yesterday evening when I saw my surgeon and the OR scheduler called this morning to confirm. OCTOBER 30th… that’s the day that this surgery is happening all risks included. This is the 3rd time that the R reverse/ anteverted PAO has been scheduled in with good intentions… this has got to be it, cause there are no other choices. At this point its been such a rough week all I can really say to my hips is bring on whatever you want cause I am going to win this in the end. It may be rough, and there may be times when I am knocked down and struggle to get up but I am going to pull though in the end. That is all that matters, that in the end I come out ok. There is no doubt that this has changed me and continues to change me in ways I never thought I could be affected. This next surgery is going to be one of the hardest with the combination of factors I have going into it.

Alright so that’s the positive side of my brain but what about the factual one? HA. You don’t want to know what goes through that side most of the time. My surgeon and I sat there yesterday still debating THR or PAO. With the unnamed infection and also the nerve issues that we have had and are still having on the left it makes this a very valid debate. In the short term considering the risks involved in a THR and the condition that my left is in (nerve injury persisting) the THR makes sense. But in the long term for someone my age, and the fact that my hip is not in the late stages of arthritis or anything like that it wouldn’t exactly serve me well. The plus side, as I have said before, is that I could walk on it that week and it would spare my left hip a bit more. Infection with a THR though would not be pretty; actually with either surgery it wont be pretty. The PAO carries with it A LOT more risks and it’s a longer surgery, a larger incision, a much tougher recovery and a lengthier one, BUT should all go well the benefits are really good. The PAO still remains our surgery of choice. There are a few modifications to it that we could make to reduce a few of the risks, such as making two different incisions, one posterior and one anterior but this carries its own risks of blood loss. We will see what I wake up with honestly.

Post operative arrangements will remain just about the same as we had figured it out before. I will go through surgery, starting a bit later in the morning because he has a quick case that was already on his schedule first. Then I will be in the hospital for several weeks followed by rehab. We are unsure of how my left will take on the significantly increased stressed and also where I stand in terms of this infection. There are going to be plenty of post- operative challenges that we have no way of telling their outcome and therefore need to be prepared for the many different possibilities.

Two weeks. Exactly two weeks from today. Is it too soon in terms of where my body stands at the moment? It very well may be. Do we really have an option to push it later… well there is always the option but the question here is which is worse for me, going forward now or waiting longer? Neither myself nor my surgeon know the answer to this. We are choosing to move forward and hoping that it’s the better of the two. The thing is, which may be hard for many of you to understand (completely ok by the way), is that surgery is not exactly a step forward, it is first a very big step back. It is a positive thing that we are going on with surgery but its going to set me back very far in terms of both my left and right hip, and after surgery I will have to get very hard to arrive back at the point that I am now, which still includes the inability to walk. My point here is I will eventually arrive back at the point we are at now and my surgeon and I are again going to have to sit here and figure out how we move forward from here. We do not have the answer to that, just incase you were wondering.

My fear has increased since last I wrote in reference to surgery. I am not exactly coming from the strongest place either since the infection incident that started on September 1st (I cant believe it was nearly a month and a half ago!!). Overall I feel very unprepared with all this, but that’s the nature of the surgery that I am going into. This has also interfered with an anniversary cake order that I was supposed to do (yeah I know how the heck can you think of cakes Em at a time like this!), but I have figured out how to make it happen believe it or not.

So anyways, here’s to hoping that the third time is the charm with the scheduling of this surgery. It will be the start of another long and difficult road; Just one of many winding paths on my hip journey.

Surgery Day: October 30th
Days till Surgery: 14

The Unfamiliar vs. The Familiar

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

One steri- strip off… only 6 more to go! The incision looks pretty awesome, barely showing up! It’s as though you took a pen and drew a think pink line down my skin. This is contrary to the past where my incisions have spread and been very obvious on my skin. This was actually a part of the goal when closing up from my most recent surgery- to take the scar tissue that was built up underneath, remove it and close the incision in a very precise neat manner. So far… its been a success! Woo hoo! We will see what it looks like after the rest of the steri- strips are off.

There are 9 days left to surgery, less than double digits. Its happening and my surgeon and I have both deemed this day as “the point of no return,” referring to the fact that once this is done, its done and the only choice after is to move forward with recovery. In all honesty, that is probably the scarier part the fact that once surgery is done, the damage is done and we, I, have to deal with whatever the recovery entails this time. Too bad life doesn’t work in a way where if you can’t deal with it you can just stop time, regroup, and then continue on your way. Time clearly waits for no one, it just keeps moving whether we like it or not. The 8th is going to come, and I am going to be put to sleep that morning and when I wake up, that’s when I will know what happened, and even then there are still going to be things that are going to be up in the air for several days.

The other day I met with my surgeon, to talk over things, make sure that everything is in line pre and post operatively, or at least everything that we can have control over.  We got into a conversation about the familiar and unfamiliar, why we as people tend towards what we know rather than what we don’t know and how essentially this holds us back from getting anywhere. I share what I remember of this with you today, not necessarily to give you any thing on my hips, but rather with the hope that you will take something away regarding the questions and the actions that you make everyday. Maybe part of developing as a person is going for what is uncomfortable more often… you’ll see what I mean… I hope.

This was my comfort the other day… i made pumpkin bread and a pumpkin latte… certainly made my rainy day with hip pain just a little better :)

We constantly talk about surgery, but its not going to solve anything because at the end of the day I am still going to be in surgery. I am still going to be on that OR table asleep with no control over everything. So talking about surgery may calm me temporarily but its not going to get us anywhere. The hardest thing about surgery is the after effects. So I need to focus on what I do have control over, which are a few aspects of the post surgery plans. I know what happens in the OR, I could repeat it back to you, but all those technical aspects they are up to my surgeon, its out of my hands, but I am comforted by him talking about it because it is the familiar. Its easy to hear because I kind of know what I am expecting to hear, it’s the easiest thing to do and the most comfortable thing. This is what we do as people each and every day, I am sure you can think of an example; We get distressed, we go to the most comfortable thing, the easiest thing that we know for certain we can do. Its almost similar to the idea of people who refer to certain foods as comfort food, its familiar, there is nothing unknown.

As a patient, as surgeries get closer I avoid conversing about things that are uncertain, things that are difficult, things that are uncomfortable because its simply human instinct to go to what is comfortable when we are stressed, nervous, or scared. People do this in school and in their jobs everyday. We as students will study the things that we know rather than the things we don’t know. Why? Because it makes us feel good, it makes us think that we know what we are talking about so we go into that test with confidence. But then there is a problem with that test and we do poorly because we did not know the full spectrum, we avoided the topics that were seemingly difficult to learn, the parts of studying that make it tedious and uncomfortable. People do it in their jobs, they avoid tasks that are uncomfortable, the things that are hard. However heres the thing… we get good at things not by being familiar but rather by being uncomfortable. The familiar, the comfort zone is essentially a time waster, rarely accomplishing anything.

This PAO that we are moving towards is uncomfortable, its hard, and it does not come without risk, in fact its just about the highest risk that we could ask for. But the benefits, the potential outcomes those are high, and they are worth it. The after effects of this surgery are no more comfortable, in fact they come with even more discomfort, difficulty, that one would rather not face. Why would one not choose the hip replacement option when you can partial weight bear immediately after surgery, its much less damage to the muscles and much less risk and a much easier simplified recovery. It’s the familiar hip surgery as so many are done. Yet we chose the PAO and are moving forward with it? For someone my age, going with this procedure makes more sense, and therefore my surgeon and I are both going to face this uncomfortable zone, if you will, with both the procedure and the recovery.

Well I suppose I have given quite enough of my two cents for the day. My hips have not been very cooperative lately, putting up quite the challenge to me for getting around. I have 9 days left and quite a bit to do in those 9 days. Many things that need to be in line before I head in and basically lose control and independence for an extended period of time.  Yet here I am still baking breads and such… focus Em focus!! It will certainly be a race to the day, the day of no return, the day where we face the uncomfortable head on not only in the OR but for the many inevitable days to follow. 1 steri- strip off on the left, and a right hip that’s failing, and a surgery that’s 9 days away… the goal at this point is just to get there. Get to that date in one piece, that’s all that matters.

Lucky 13

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

13 is notoriously known as an unlucky number, however most times when it has come up in my life good things have seemed to happen. I was number 13 when I graduated my dance teachers training with the highest performance and test grades, 13 always seemed to be a lucky show choir number, and the events just go on. Im not one for superstitions, I don’t really believe that a number can be lucky or unlucky, but what I do know is that 13 is the number of the day today… there are 13 days left until the anteverted PAO on my right hip. Ironically, I am sitting in a hospital at the moment, waiting for my Uncle to come out from surgery; it’s the first time in a LONG time that I have not been sitting in a hospital for me. Not only is my uncle in for surgery today but very good hip friend of mine is in for what we hope is going to be her last hip surgery for a good long time.

Incision… coming along well… about 4 inches of the 8 inch incision that exists. Healing very nicely.

13 days. So much to do. It seems like it is coming up so fast, yet time feels like it is dragging at the same time; the days feel like weeks and the weeks feel like months. I am sure there is some event in your life where you have felt something similar to this. October 8th can not come soon enough, yet I don’t want it to come at all.

So what have I been up to lately? Hmmm well… I made it up to VT this Saturday though I am quickly learning the new limitations to my hips. The left was only a week and a half past surgery and the right has progressively gotten worse and at a slightly scary rate. None the less I made it up here and that night enjoyed a fun evening out with my aunt and uncle. We went out for Thai food and then to a comedy show that was a benefit for the local football team. A night out with them that was nothing but catching up and laughter was exactly what I needed. I had had an extremely rough week physically and emotionally and could not have been more grateful than to spend this evening with them.

The rest of the weekend was pretty low key, sorting out a few more things for surgery, especially post op details which range from hospital stay post surgically to rehab to what happens once I am out of rehab. Unfortunately insurance has started to really throw a wrench in all this so my surgeon and I have had to get a bit creative in attempting to figure all this out. The wrench unfortunately seems to be jabbed a little deeper each day with new insurance decisions to be made.

In the mean time I’ve been searching to find better ways to explain whats going on in this surgery. The best way is to

PAO Model… note the fragment made from 3 cuts to the pelvis.

stand there in front of you with a hip model showing you where they cut the bone and how they then can just take that chunk of bone (within it your acetabulum) and then move it to wherever they want to give me better joint coverage and mechanics. However, we all know that is not going happen. So after a bit of searching I came across a picture of a hip model on a separate hip blog (I cant take credit at all) and it clearly shows the size of the fragment that is created in the pelvis to then be screwed into a totally different place. This picture is a normal PAO, as opposed to a reverse but it still gives a good picture of the fragment that is created. This then heals together over time, as is indicated by my recent screw removal. Sounds simple right? Cut the bone, move the fragment screw it in place and you’re done. Wrong. It’s a lengthy procedure taking up the majority of the day and recovery is not the easiest process.

At the moment I am not in physical therapy due to insurance issues that came up post my recent hospitalization and surgery. I am doing my best to keep up the strength that I can in my left leg, as the last surgery and hospital stay took a bit of a hit on it. How strong my left hip is will be a factor in how the recovery of my right hip progresses. I definitely miss PT and the structure it provided to a small part of my day and the feeling that I was doing something active in the recovery of my left hip. It was however really adding to the aggravation of the right, so the choice of whether or not to be in PT is a bit complicated and insurance made the final decision… for now.

Nothing all too interesting has occurred lately, I’ve taken a bit of a hit mentally and physically with this last set back but I am hanging on and continuing to try to see the glass as half full. Surgery is in less than two weeks and I have a feeling that things are going to be pretty slow until then. 13 days, lots to do, and overall I hope that the 8th is here before I realize it.