Tag Archives: hip dysplasia

In Just One Town

Posted by emi2hips in Hip Hop 5K, Hip Journey and tagged with , , , , , ,
Hip Hop 5K race table...

Hip Hop 5K race table…

Yesterday I pulled things together to have a table to represent the Hip Hop 5K at the annual Easton Lion’s Club Family Fun Day. This was just 2 days, not even, after I had yet another rough appointment at the hospital (a definite understatement). One of the Lion’s Club members came up to me and said to me jokingly “you’re the wrong person to be doing this, cause you are up and about and bouncing around, and still with a smile on your face even after all that’s happened,” and I just thought about that, and replied, I think we all need a little light shed on the situation, no matter how much it hurts inside.

I pulled together brochures, a banner, posters, registration sheets, awareness ribbons, and hip bands and chocolate chip cookies thanks to my dad and from 10-4 spent the time talking about my story, listening to some others, discussing the race and what it supports, what hip dysplasia is, what we can do about it now and ultimately where we hope this race will extend to. It was a good start to getting the word out about the event and raising a bit to put towards the race, but the most shocking thing to me lays in the people that I met.

Along the journey you hear the words, “its more common than you think, in varying degrees, but its out there” and you think to yourself, “then why the heck can I not find anyone.” For starters, it’s a wide age range from newborns to adults and cases are just all so different based on each person and the degree of dysplasia. But that doesn’t really cut it for an excuse if you are a patient with hip dysplasia and all you want is someone to relate to. Yesterday in the first hour that I sat there at the table I met 2 mothers whose children had hip dysplasia (and are still young and being monitored) and 3 others who either had a relative that had been diagnosed with it, or had it themselves. Of course I had to ask where all these people were from, my town, Easton.

Think about that, one town, one hour, at a small event where you have a very small sample of people from the town and you

Awareness Ribbons

Awareness Ribbons

get these people who all have some connection to the event, to hip dysplasia, in one way or another. As the day went on, I met people who found a connection because of a hip replacement, or other people who had danced and therefore had some small connection with me in a common interest. So if that is all in one town, think about how many people can draw a connection in surrounding towns,  in a single state, let alone across a country. I started to realize how many people in a single town had someone that could at least slightly understand what they, their child, family member or friend is going through.

One woman yesterday talked to me about how her child used to trip and the strange way in which her feet were turned when she would walk and how many doctors just didn’t know what to do and had shrugged her off, that was until they finally got into the orthopaedic hip program at Children’s Hospital Boston. I told her that I understood the tripping and the feet going in a different direction, I got it, I knew how it felt for her child and that I knew how scary it could be. She thanked me for being a part of making people aware, and said its about time that someone started a road race to raise the awareness and funds for hip dysplasia. I can not tell you how nice it was to hear that from a person who saw hip dysplasia as I did, something that comes in unannounced, unpreventable, and takes over the life of the patient and family, something that really just needs to be spread throughout society making people aware.

Yesterday for me was a day to start getting the word out, to just let people know that this race is happening, that this condition is affecting more than just a few people, and that many of them actually can relate. For me learning who else is out there and what their experience has been, and having this chance to educate people just a little bit about hip dysplasia was rewarding. It was a vastly different feeling after the events of Thursday, though as I talked, I could not help but to continually revisit the points of my journey and wonder how the heck this is where I ended up.

Yesterday, all in all was a successful day in terms of awareness, got a few more registrants and a few more donations to help us to our goal but I am most grateful for the people I met, the chance to share my story, to listen to others and to let others know about this race that is set and ready to go and just needs the backing of  runners, walkers, friends, family, you name it. Yesterday was just the start of A LOT of work to be done… if you want to help….you know who to contact J

 ”Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful people with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated failures. Persistence and determination alone are omnipotent.”

– Calvin Coolidge

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).

Hip Happenings… and an Announcement…

Posted by emi2hips in Hip Hop 5K, Hip Journey and tagged with , , , , , , , , , ,

It has not been the easiest of weeks since I last posted. There are times when you no longer see the light at the end of the tunnel just want to let go, and then all of a sudden that flicker disappears and you feel as though you are trapped in the dark; not a clue of how you are supposed to fight through. It is tempting to just lay down and call it quits. The hours, days, months, weeks, and (for myself and many) the years pass by and the tunnel gets no lighter, the uncertainty remains; the “I don’t know” response becomes more common the more time that passes, the frustrations increase, and the hope dwindles until you start to wonder if ‘hope’ is just a figment of your imagination after all.

I am primarily on crutches now, although there are some days that I get up and I do not want to step on my right leg, either its tired or it hurts, but when I try to offload some on my left leg, it does not kick in the way I need it to, definitely an UGH moment. I am determined to keep myself up on crutches as much as possible and to just hope that my circumstance will start to change one day… but then again what’s hope got to do with any of this at this point. I was out the other day with a dear friend of mine a few years younger than me, someone I have known since I was little. She shocked me with the way she saw my situation before I had even said anything about the past two months. “Em,” she said to me with such a serious face, “I can not even imagine, how terrifying it must be to live with such uncertainty, to not know what is going on and to not be able to plan much more than a day or a week ahead, to not know what news is coming good or bad.” And she said it a bit more eloquent than I can relay to you at the moment but the point is that she started to enter what the biggest mental struggle is for someone in a case like mine, or of many varying degrees. We all face uncertainty in our days, no one can see the future, there is just a much greater amount present in many of the hip dysplasia cases are out there.

A few days prior to that conversation with my friend about the terrifying thing that is uncertainty, I had been to a follow up with my surgeon that was going relatively ok, until my mind started to process everything we were discussing. It is not like there was

A little hint of what is coming up in the next paragraph or so...

A little hint of what is coming up in the next paragraph or so…

much that is new compared to our discussions in the past month, but the difference each time is that there is more re-affirmation of old things than new ideas of how we can approach this. We discussed a neuro appointment that was being scheduled in for October, and hearing that I just thought to myself, “oh shit, seriously? October? That’s, oh wow, that’s a long way to keep going like this with potentially no answers.” There are always new thoughts of how we should be approaching my hip case brought up and we discuss how PT is going and what we have been doing to try to rehab both my left and right legs, but the frustration of no answers, of the uncertainty, the “I don’t know” in reference to my left leg seems to overshadow anything good that is happening in the right leg.

“We are talking to everyone that we possibly can, across multiple disciplines in medicine,” my surgeon continues to tell me, “and we are going to continue to do so; talk to everyone that we possibly can. I am still searching to find an option, but you can not give up either.” He has noticed how exhausted I am, mentally and physically, but losing that mental capacity (and fast) to keep fighting this and finding a solution that leads to a somewhat functional outcome.  The fact that no one we talk to, no matter how experienced or high up they are, seems to be unwilling to commit to any diagnosis or any plan, is downright scary and plants quite the seed of doubt in my mind. But yet here I am, and I am still writing this blog, and I have received several emails from fellow hip people in frustration, or anger, sadness or fear and the most I can do is just keep writing and letting them know they (and myself) are not alone.

Which I suppose is a great segue into the good thing that happened this week…

Remember I told you I had an announcement? I realize I am a few days late in getting this blog out on it, but give me a break,  I’ve

The Official Race Logo for the Hip Hop 5K

The Official Race Logo for the Hip Hop 5K

got to stabilize my own life first before I even think about writing a blog (not the easiest thing some weeks and this past week was no exception)! Anyhow… May 1st (Wednesday this past week) I officially launched the website for the FIRST ANNUAL HIP HOP 5K, in the country!!! This race is in support of ALL of us that face hip dysplasia, from newborns to adults (yes it spans that great an age range), and the money raised from the event goes to benefit the Boston Children’s Hospital hip program and the International Hip Dysplasia Institute (Orlando, Florida).  Details would probably be helpful huh? Where to register, when is it, what can you do to help us whether you live far away or in the area? All great questions… amongst others… you can scroll to the bottom if you don’t want my little spiel but I promise I’ll be as brief as is possible with me.

For all you who read my blog, and have no clue what hip dysplasia is, well that’s ok I guess but its time to become aware of what it is, who it effects, and the impact that it can have both physically and emotionally on a person’s life (if you have not already learned a piece of that from my blog or if you are just joining us now).  Then for all you who have it, maybe you’ll learn a little more, or see it in a different way, I don’t know! So hip dysplasia, simply put means that the bones of the hip joint are not aligned correctly and it prevents the joint from functioning properly. The joint wears out much faster than normal, “much like a car’s tires will wear out faster when out of alignment.” It is also a silent condition, meaning that pain is not usually felt until much later stages making it harder to detect and to treat. About 2-3 infants out of every 1000 require treatment for hip dysplasia. BUT despite this fairly common frequency, the awareness of the condition is poor outside of the medical profession.

For all those who are thinking why the heck should I care about hip dysplasia if I don’t have a severe case of it… well, adults with hip dysplasia should be aware that it is the most common cause of hip arthritis, which more often than not leads to hip replacements. I am sure that you can all think of someone who is in one of those two scenarios. Even more alarming is that more than 90% of the young adult cases can not be diagnosed in childhood by the current methods of screening. We clearly need to develop not only better means of detection but also treatments for the condition.

How was that for short? Two paragraphs and a simple overview is complete (for now). So back to this road race…

The INAUGURAL HIP HOP 5K in the country is set to happen in Easton, MA starting at the Oliver Ames High School on Saturday August 24th, with a 9 am race start. There are full details on location on the official site that I built up for the race,  www.hiphop5k.kintera.org

The Hip Hop 5K is a One Hip World event... a group that I am VERY proud to be a part of now!

The Hip Hop 5K is a One Hip World event… a group that I am VERY proud to be a part of now!

How can you help? Would likely (and hopefully be your next question). If you are in the area on that day or prior to, please consider registering to run (5K) or walk (2 miles); you can choose to register just to simply run or walk, OR better yet help us in our fundraising efforts!! However, regardless of if you just run or run and fundraise, it ALL helps! The other option is to start a team and fundraise as a team but run or walk as an individual. There is an incentive for being one of the top fundraising teams… You can also consider volunteering for the race as well either to help prior to race day or on race day. If you have a business or a friend with a business consider sponsoring us or donating goods! Every little bit helps!!

What if you live far away? Or can’t be there on race day? There are options for you too! With three of the key people in my hip journey living in other countries (two in Australia and one in Canada) and a lot of family in Vermont, a few in Arizona, a new key person in my life living in Georgia, and many others living around the country. If you can a donation to the event in general or to me will always help our cause BUT if you want to take a bigger part,  a few of my distant supporters have already taken part in starting their own “virtual team” or registration where you can help us fundraise and spread the word and be a part of it but not have a number for race day, or a commitment for race day either. You can do it all from home. I totally understand though that some people would just prefer to donate and don’t like the whole fundraising thing… you can still help us spread the word about what hip dysplasia is and donate to the event!

So I think that would be just about it for now regarding the event. It is a HUGE deal not just for me and the kick off, but for ALL of us. This race is not just for me, it is for EVERYONE involved in this fight against hip dysplasia. It is for the doctors that work diligently to find better ways of diagnosing and treating hip dysplasia, and the ones the fight for and with us each and every day (such as my surgeon who has done nothing but make sure I get through this). Its for the family and friends of all the patients who deal with learning about the condition and how they can help their loved ones, which is often a very difficult thing to do. Most of all It is for the hip dysplasia patients, those who have fought and conquered, those who continue to struggle and try to win this uphill battle, and those who are bound to face it in the future. This first 5K and the many to follow, are for ALL of us; the patients, the doctors, the physical therapists, the friends and family, all of us who work as a team to fight against hip dysplasia.

Please consider helping us in any way that you can. Sadly I got a response 10 times bigger when I announced being on the Today Show than when I announced the first 5k for hip dysplasia to happen in the country… in my eyes that announcement is just as big. So JOIN US in any way that you can for the INNAUGURAL HIP HOP 5K by running, walking, volunteering, donating, starting a team, sponsoring whatever it may be, big or small all of it will make a difference. The tunnel may not seem to have a light anymore, its just hidden, and the path may not have a foreseeable end but you take the pent up energy and put it towards something, make the struggle worth it.  It takes one person to make a difference, but it takes a community to make change.

FIND US ON FACEBOOK! (and please “like” the page to help us out!)

www.facebook.com/hiphop5k

Our OFFICIAL RACE WEBSITE (with all the details and contact info if you need help!)

www.hiphop5k.kintera.org

Official Race flyer... visit the website for more details!!

Official Race flyer… visit the website for more details!!

Always In The Way

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

Choices have been difficult, days have been long, opinions have been vague and undirected, and I keep hearing those three awful words, “I don’t know.” I have been struggling the past week and a half to keep everything together so that I could still live out functional days and in expending the energy to do that my blog yet again went by the wayside. But the good news is you really did not miss too much. Some very frustrating PT sessions, appointments that just left me more upset and questioning, wondering what to do next who to talk with and who to consult on the matter of my left leg. Honestly its just a lot of frustration and anger at the situation, and emotional collapses that has occurred and we have not shifted away from the decision that I informed you of on the tenth of April which was to at this time not operate on the left. That does not mean that we have stopped searching for answers, or conclusions as to why we made that choice or why we should change it.

The past week and a half has been filled with putting in about 25-30 hours a week into a project that I have been working on for a few months, and actually hope to announce within the next few days here on my blog. I’m excited to finally be able to share what has been my main focus for all the negative energy that my case generates. But for now that news still has to remain unsaid; be on the lookout though over the next few days for this exciting news!

wheelchair- dancerOther than that medical appointments have taken up a lot of my time (what else is new) and I have not really gotten much more than suppositions on what could be going on, what we possibly could do and who we need to talk to. Within the near future I will be meeting with addition neurologists and orthopedists trying to gain more insight into all this. But all those aside, in the normal every day life of my hips and me, I have always seemingly been in the way, simply because when I am anywhere it is not just me and my legs but me, myself, and my crutches. Walking I am slightly wider in terms of my gait because my crutches are out to the side of me, and the number of people that walk into them, or nearly kick them out from under me, no matter how close to my body they are mind you, is ridiculous. The majority then proceeds to turn around and look at me as though I was at fault even though I was consciously trying to not be in the way. Its not like this is anything new from when I first was on crutches, but it becomes especially obvious in the places where people see me often and get used to me being there and all of a sudden the doors start swinging back into you, and people walk right into you; as though being on crutches for an extended period of time suddenly makes you able to do everything, like holding a door, that everyone else can do.

I was sitting having coffee this week with a friend and my crutches were leaning up on the table, but leaving enough of a walking path where if people watched where they stepped they would be absolutely fine. No one else had a problem with them, but then one of the baristas went to go clean up a bit and walked by my crutches. He did NOT trip on them, he did not even come close but he proceeded to speak to me in an angry tone about how someone is going to trip and likely him and really hurt himself and I needed to get them out of the way. Now there are very nice ways to say this, but he gave that impression and tone of “how dare you even think to put them there, that was a stupid choice.”  I apologized and went to move them but when I did he put a firm grip on my crutches and would not let go!! He had put them straight up at the table and I was loosing my patience. I tugged and said that if you leave them there they are just going to slide or fall over and be even more in the way. Finally I got them away and laid them on the ground. I felt as though my crutches were an inconvenience to everyone else there, and this is not the first time that this has happened. Even in restaurants there is rarely a good spot and no matter where you put them they are in someone’s way. Honestly you feel like you should be apologizing for the fact that you are disabled or injured; I got over that one pretty quick and now just want to say to them here you take them and live on crutches for a day!

The other thing along these lines that happened this week was trying on clothes at a store. The woman at the dressing room madejourney an assumption that the person with me would be coming into the dressing room with me, and I went to go say that I was fine and could do it myself but she just kept saying that the person with me could go with me. I felt as though I was being told that because I was on crutches and my leg was in a brace that I could not possibly do this on my own. I understand that she was probably just trying to be considerate of me, but as someone who does have a handicap (I hate that word), I am very adept in asking for what I need and telling people when I do and do not need help. There is a certain amount of pride that needs to be kept. I a m a perfectly capable 22 year old.

What is it that makes a person on crutches or in a wheelchair feel like they are always in the way? Is it our perspective on the world and the people in it? Or is it the way that people approach us and the social assumptions that are made about people that have a handicap? I do think that it is a combination of both where people in my shoes become defensive (cause you almost have no choice but to be) and then all the social stigmatisms and assumptions that exist. But I can say, it really sucks to feel like no matter where you go, what you do, somehow you are always in the way of someone; you or your means of ambulation that is. I have done a lot of things while in this situation that many people don’t even do on their own two feet; I have found ways around all the barriers that are put up whether they are physical or a person just telling you “there is no way.”

Simple 8 inch cake, with lemon filling and homemade sugar sea glass

Simple 8 inch cake, with lemon filling and homemade sugar sea glass

In the mean time I spent yesterday (Saturday) working on a simple 8 inch cake, standing on my own two feet with the help of the counter and the brace on my left leg, in addition to the AFO, and constantly thinking to myself how much my right hip hurts to be standing on it. But the point was that I did it, I worked through those few hours of decorating to make that possible. It was for a nurse that was really important in getting me through my post surgical rehab with my latest surgery and who has truly become a good friend of mine. She is one of those people that you never feel like you are in the way, or that your crutches put a limit on what you can do. She does not argue with you if you say you can do it and she respects when you say you can’t. There honestly need to be more people like this in the world, more people that say you can, or help you make that “I can’t” become an “I can.” It was a tough week to make this cake happen and she knew that, she also knew that it would be a simple cake since all she needed was an 8 inch circle, but I think that she knew I would do my best to include one of her boyfriends interests. I ended up picking sea glass and the ocean. At the end of that day I definitely had a painful right hip, my crutches were constantly in the way of both myself and everyone else in the kitchen; frequently falling over on the floor or tripping others. Not to mention, there was my butt sticking out as I leaned on the counter for support while I decorated and that just gets in the way ;)

That’s enough rambling on that for a day but I have certainly been constantly reminded of that this week, seemingly a little more than other weeks. It could just been that I have had such a rough time with hospital appointments and PT lately that I am more sensitive to this perceived “being in the way” but regardless it is still an extra thorn in my side. I’ve got to go get to work on my project so that I can announce it soon… really looking forward to sharing it with you all!!

 

A picture of the top. Doing cakes is a hip stressor but a mental release. Great cake therapy (most of the time).

A picture of the top. Doing cakes is a hip stressor but a mental release. Great cake therapy (most of the time).

The three colors of seaglass that were made from a homemade sugar candy formed into sheets and then broken into sea glass. Smashing those sheets into pieces is another great therapy in this hip situation!!

The three colors of seaglass that were made from a homemade sugar candy formed into sheets and then broken into sea glass. Smashing those sheets into pieces is another great therapy in this hip situation!!

 

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!

 

I have, I am, I will–

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

…Persevere… I want to give in, I want to throw up the white flag, this is getting too hard…. but I have worked too hard to get here, I am continuing to work too hard to stay here, and I will continue to persevere no matter how much time that takes.

“I do not define myself by how many roadblocks have appeared in my path.
I define myself by the courage I have found to forge new roads.”

Roadblock: (Noun) Something that blocks progress of prevents accomplishment of an objective

Oddly enough, this was shared with me today (this blog was supposed to go up yesterday) and it happens to fit perfectly with my point here.

Oddly enough, this was shared with me today (this blog was supposed to go up yesterday) and it happens to fit perfectly with my point here.

There have certainly been a plethora of roadblocks, both big and small just within the past 4 years of working with my surgeon on finding a solution to the disability that my hips caused. I think often times we forget that it does not have to be literal (although it often is) but can also be used figuratively often a roadblock within our thinking. We are at a crossroads, my surgeon and I, and it is taking both of us time to figure out which direction to go, as neither one seems ideal, and both ways have their own sets of roadblocks; but in reality which path in life doesn’t. Some just have a few more than others. So how would I define the current roadblock that my surgeon and I face: a choice in which it appears that you can make an equal argument for either side, 50/50 so to speak, or one where you could flip a coin and say that operating is heads and not operating is tails. The phrase “there is not enough data to make an accurate decision” is said all too often and I think that we are just letting our choices play mind games with us. Myself, I am completely conflicted constantly flip- flopping between to operate or not. Though a few people have told me that my opinion comes across leaning towards one option more than the other when I talk about the choices. There is a counter argument for any reason that you can come up with for surgery or not operating and there in lays the main conflict with coming to a conclusion.

“I do not define myself by how many disappointments I have faced. 

I define myself by the forgiveness and faith I have found to begin again.”

You could say that my left leg is a disappointment, which would actually be an understatement. It lays at the crux of the decision my surgeon and myself are trying to make. What the heck to do with it?! At what point do you say that this is it, and now its not about figuring out what else the medical world can do for me but how we find a way to move forward, to essentially begin again. When do you start to rebuild all that has been knocked down. And how do you convince yourself that it is not surrendering to the situation? How do you convince yourself that saying it is what it is and moving on and trying to make yourself as functional as possible in the present situation is the right choice?

“I do not define myself by the number of mistakes I have made.
I define myself by the Knowledge I have learned from trying a new way.”

My left hip was my 5th surgery, and it did not go well, as we are experiencing now. Many considered going in on my right hip a big mistake after seeing the left was not improving (both surgeons and lay people alike), however my surgeon and I chose to operate because what other option did we have. We took what we knew from going in on my left and we applied it, pulling in a neuromonitoring group and taking recovery down a slightly different path. My surgeon and I both learned from this experience, and gained a different perspective. We have made every choice for each surgery, and each test carefully and with caution. Some have been mistakes, but really, there was no way to tell the future, we chose what we thought was best and sometimes, it just happens to be the wrong choice. Oh well, you learn, you don’t get upset over it and in the end, the struggles that my surgeon and I have had are used to help other patients and other surgeons. This choice we are looking at now who is to say that not operating would be a mistake… then again would operating be a mistake too? Which of us will have the courage enough to make a choice, and face the consequence? I’m not sure because we know that either direction comes at some sort of price.

 “I do not define myself by how often I have appeared a fool.

I define myself by the number of risks I have taken.”

 Many people have expressed to me that we just have to make a choice. Choose. Its that simple right? I mean it must appear so foolish to those on the outside that my surgeon and I, as well as those helping us, keep going around in circles, adding in information here and there, considering another option once in a while but ultimately trying to decide between two things- operate or not. Stupid? Its not even possible to let any of you into my surgeons or my shoes on this one. The list of things that go into making this choice seems endless and complicated. We have taken risks in the past that may have seemed foolish to those on looking, but low and behold more often than not those risks have paid off. Would it be foolish to go in and operate? But then again would it be a risk worth taking? Even though the risks in this case vastly outweigh the potential benefits. Make a decision already!! Much easier said than done. Its overwhelming.

“I do not define myself by how many times I have been knocked down.

I define myself by how many times I have struggled to my feet.”

The ultimate definition of how this hip journey works. You are so close to the top of the hill and before you know it you trip, and you are stumbling back down to the bottom. It becomes exhausting, mentally and physically, to keep pulling yourself up, to keep going. I guess here is where I can tie in this past week. Torture hour, PT, is becoming increasingly frustrating. I understand what I am being told to do, I understand what muscles they are asking me to try to use, I just cant seem to make it happen. That is a very literal way to put it, but it makes the most sense. We continue to try walking and weight shifting and the right is slowly improving, becoming stronger and I am well aware of where it is in space. The proprioception in my left is little if not nothing, and makes shifting weight and walking extremely infuriating when you try and try over and over again but get no where. I am so used to putting work in and at least getting a little something out of it. I feel like every time I go to PT I fail yet again, I fail to improve on the left, and to progress in the weight bearing capabilities of that leg. I realize that failure is a harsh way to put it but it feels like each time the failure is worse, because you have yet again tried and not succeeded. I am continually knocked down in that sense, and constantly trying to pull my self back together to get through the next day, the next therapy session, the next appointment; to put on a smile when I go out. I think the hardest falls though are each surgery that I have been through since I have yet to make it close to a full recovery before we go back in. You feel like you worked so hard to get that far and you are knocked back down further than where you started from. Even every conversation that we have had lately whether it be with my surgeon, another physician, or my therapist, you feel like more and more hope is being taken, literally evaporating into thin air.

Regardless of all the mistakes, disappointments, roadblocks, struggles, and many many mountains that I have climbed and tumbled back down I am STILL picking myself up, trying to heal any wounds and continuing to figure out how to move forward; though I must admit it is becoming increasingly trying, and each fall seems worse than the one that preceded it. Pain has been an issue with both hips lately, and I am constantly battling that trying to figure out the best solution. The situation with my left is as grey as grey can get and I know that my surgeon and I need to come to a conclusion, that going around in circles is helping neither of us, but everything happens for some reason (to be cliché), and there has got to be a reason that our decision continues to be delayed no matter how much internal torture or pain it causes to those most closely involved. I have persevered, I am persevering, I will continue to persevere, no matter how many times I feel like letting it all go. “You can not let this beat you,” my surgeon said, “I will not let this beat you, you have come too far, no matter how much longer we have, it can not beat you.”

My Easter Egg this year... figured I would share it since it is Easter weekend, and well, every blog needs a bright spot somewhere even if its just a word, or a single picture.

My Easter Egg this year… figured I would share it since it is Easter weekend, and well, every blog needs a bright spot somewhere even if its just a word, or a single picture.

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

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