Yesterday’s Verdict

Posted by emi2hips in Hip Journey, Uncategorized and tagged with emotion, failure, fear, frustration, hip, hip dysplasia, journey, life, pain, sadness, unknown May 17, 2013

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.

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).

The Escape

Posted by emi2hips in Hip Journey, Uncategorized and tagged with emotion, family, happiness, journey, life, perspective, recovery, road trip, unknown May 6, 2013

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

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

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

So happy to be back in the hammock reading

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

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

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

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

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

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

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

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

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

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

Missing the peacefulness of the Burlington waterfront already!

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

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

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

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

A few more pictures from the weekend….

: They will forever be the funniest 4 people I know. Gotta love them.

: My dad and I after the first communion :)

: this is what happiness is…

: A beautiful gebera daisy (my favorite)

Hip Happenings… and an Announcement…

Posted by emi2hips in Hip Hop 5K, Hip Journey and tagged with 5K, emotion, FAI, frustration, hip dysplasia, Hip Hop 5K, recovery, road race, run, running, unknown May 3, 2013

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…

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

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 1^st (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 24^th, 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!

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!!

Always In The Way

Posted by emi2hips in Hip Journey and tagged with baking, birthday, cake, choices, emotion, frustration, hip dysplasia, journey, unknown April 21, 2013

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!

Other 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 made 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

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).

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!!

Choices and Opinions

Posted by emi2hips in Hip Journey, Uncategorized and tagged with decisions, frustration, hip dysplasia, journey, opinions, progress, recovery, unknown March 19, 2013

“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 18^th) 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.

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.

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

Catching Up (again)

Posted by emi2hips in Hip Journey and tagged with baking, birthday, cake, emotion, failure, fear, frustration, fun, happiness, hip dysplasia, progress, recovery, unknown March 7, 2013

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.

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)

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 50^th 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.

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!

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)

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

The rose that went on the top of the 50th birthday cake.

My youngest cousin and I at the birthday party. Any time spent with her is an absolute gift to me, I adore her and treasure our time together.

The cake sitting on the dinner table on display :)

One of my favorite angle of the cake that I made.

Decorating the flowers with an edible food pen…

The flower that I made from fondant and decorated.

FInished… I even painted on the white royal icing Happy 50th Birthday to make it purple and to match the deepest purple without using massive amounts of food coloring.

Left over slices from the 50th birthday cake, which was chocolate and vanilla.

decorating anna’s cake with my friend.

The top view.

Writing the final touches in on Anna’s cake. Doing my PT for the day standing up and balancing while writing with frosting!

Post Nemo Hip Happenings

Posted by emi2hips in Hip Journey, Uncategorized and tagged with baking, emotion, hip dysplasia, hips, journey, nemo, recovery, snowstorm, unknown February 15, 2013

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

Snow filled doorway. Post Nemo.

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

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

Too many Nemo pictures to share for one post!

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

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

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

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

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

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

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

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

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

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

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

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

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

Betrayal and Cakes

Posted by emi2hips in Hip Journey and tagged with baking, birthday, cake, emotion, frustration, hip dysplasia, journey, recovery, surgery, unknown January 29, 2013

My hands ached as they rubbed against the cold wheels of my chair, and the wind made my nose and ears turn red. It was a frigid night, falling well into the negative twenties (fahrenheit), and regardless of a coat, scarf and mittens the cold went straight through me. It was about 9:30 pm, and my friend was accompanying me to a late night MRI Tuesday of this past week. Since it was after hospital hours we entered through the ER entrance (I am not a stranger to this as this is certainly not my first, second or third late night MRI) and went through the deserted hallways lined with empty hospital beds, and gurneys, amongst other odds and ends. The lighting is dim, as the main lights are shut off in the halls and MRI happens to be in this odd corner of the hospital. Part of the route there has a fairly steep ramp down and then up, so leave it to me to build up speed going down one in order to get up the other. I had my friend laughing as I sped down saying she couldn’t keep up and to be careful, she didn’t want to have any injuries. My response, you have to have fun somehow when you are stuck in a chair!

The lights were bright in the corner of the MRI suite and I wheeled up to the window, filled out the usual paper work, any metal in me to be aware of? Yup, the screws in my hip and the usual reaction, you seriously have screws in your hip at your age?! Why yes I do… may I ask why that is so shocking to someone at the front desk of an MRI? And somehow, no matter how many times I have been there for MRIs of my hips, brain and spinal cord, I always seem to meet new people; this is the one and only department that ever seems to happen in. Even in xray I see the same people! After waiting a bit a woman came out to bring me back. I have been through this enough to know to wear yoga pants or my pair of scrub pants with a tee-shirt and to make sure that my bra has no metal anywhere in it- solution, sports bra. This all allows me to not have to go through changing prior to the MRI and makes my life quite a bit simpler.

Sitting in the waiting room, I am alone until another woman is brought back. She asks what happened to me and give her the simple one sentence version. She however, is curious and tells me that her mom was paralyzed post a hip replacement and it makes her so angry to see a young person going through any type of hip procedure. I continued to explain to her, to try to get her to understand that I am vastly different from her mothers situation, however as caring as she was I don’t think she heard a word I said cause the response was “it hurts me so much to see someone so young go through that. What does it feel like to have your body just give out on you?”

Seriously? I then had two and a half hours in an MRI machine to dwell on that conversation and everything that was happening. First was the prep, where they put an IV In the ac joint at the elbow; this is where they would be injecting dye for certain parts of the exam. I was then laid on the table set to start with the imaging of my brain, A white cage- likes structure is placed over my head and ear plugs into my ears, then soft pads on either side of my head filling in the space in the cage that my head does not fill. That way my head is less likely to move. I was covered with a blanket, given the “emergency ball” to squeeze incase I needed to stop (this has never happened to me) and then I was slid head first into the machine. Many people find that claustrophobia kicks in… I am perfectly fine and lay there just staring at the ceiling of the tube, inches from my head, and use the time to think. Me and thinking is a bad combination.

Incase anyone forgot, this is the result of that “betrayal”

I thought about what the woman said to me, the way she phrased it saying it hurt her and asking me what it felt like to have my body give up on me. Well, I don’t think I would phrase it as my body “giving up” because all the time leading up to my final injury when surgeries started, my body was fighting; it just lost that one battle and had to start fighting the new ones that were tests, surgeries, and recovery. So never has my body given up on me, more like, hmmm… betrayal. When my hips started being painful, and then got worse, then started giving out on me, and causing me to have to give up things that I loved I felt betrayed. I felt like my body chose a totally different path than me and I just had to go along with it. At first it felt completely unfair (and at times it still does), but isn’t that part of how betrayal feels in anything? Its never your fault at first but then you realize later on that you contributed to it. For me, it was just choosing to participate in sports and activities that were the least friendly hip things I could choose. Of course I didn’t know at the time that what existed in me was only going to get worse.

So if she felt hurt by that, just imagine how much it impacts my family and friends. I mean we are all connected, so what happens to them effects me in some way and what happens to me in turn has some impact on them whether that be positive or negative. As a bystander, no matter how close you are to me, you can be more selective than I about what effects you and to what extent (sure this is not the case in some instances but in most). So imagine if you were me, or someone else going through a similar situation, what do we feel? How much does it hurt us? I can’t choose what I go through, what gets scheduled, what tests have to be run (and there are many that are not fun) or how all this impacts my life. I can change how my attitude is going to be through it all, or how I am going to react, how I let it define me but the rest of it is out of my control and it all hurts. If it hurts the woman in the waiting room to see me like that, it hurts me a thousand times more to experience the betrayal so to speak that occurs.

The MRI on Tuesday night was done of my brain and spinal cord and I do not know anything about it yet. On the

Her Birthday Cake, my creation.

weekend I made my first cake since being out of the hospital/ post surgical rehab. A friend that I have known since elementary school asked if I would make her cake. I told her that we would have to play it by ear and then the week of her birthday I decided that I would do it. It was fun to get my hands into something that was completely unrelated to hips and then to be able to get out of the house and celebrate with her and her family, was certainly a treat. Its definitely different working on a cake from a wheelchair; it’s a different angle, a different perspective on the piece and its harder to get leverage when rolling anything out, or mixing in colors to icing. To be at the house to celebrate her birthday was also different, a small space with people who are all on two feet. This is a similar issue that I had at a family party the previous weekend where I just felt beneath everyone in one way or another and still struggled to get around in the midst of others. Even when people are aware, I am just not seen.

This week has a few things to finish it up and heading into next week. It started off great with a delicious dinner at a friends house, which included meeting a few new people; it was all around a great time and fantastic conversation as well as a delectable meal! Tomorrow (Wednesday) I am going out to lunch with a bunch of the nurses from the rehab center. We were all around the same age and they thought it would be fun to get us all out for an afternoon, so I am quite excited for that outing. They happened to be there when things started to get a little cloudy in terms of my recovery and where it is going. Therefore it will be nice to just get out and have a good time with people who understand where I am at the moment. Thursday I go for a follow up with the GI and then Friday (I just found this out this morning) they are doing an ultrasound on my hips in the morning. Monday the 4^th, is my follow- up with the neurologist and then my surgeon and I have to decide when we are going to sit down over all this and make some decisions.

It will be an interesting next several days, and a bit of a struggle to get through at times, but as long as my hips decide to cooperate, and things go relatively smoothly then I should come out ok on the other side of them all! When it feels like your body has betrayed you it is hard to learn when to fight and when to sit back and just ride along… but I think this is one of those weeks where I just let things happen and deal with the results later.

Another shot of her cake

The flowers, which I created from gumpast and handpainted with blue sparkle dust then steamed to set the color!

Last picture… just for kicks I suppose

Im Only Human

Posted by emi2hips in Hip Journey and tagged with emotion, FAI, fear, frustration, hip dysplasia, hips, hope, human, journey, life, surgery, unknown November 7, 2012

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!

The Mix Up

Posted by emi2hips in Hip Journey and tagged with emotion, hip dysplasia, journey, Straight No Chaser, surgery, unknown, walking October 26, 2012

Sometimes you wait what seems to be forever for something to happen and then once it happens its not exactly what you expected it to be. Well this is what happened with my neurology appointment this past Wednesday. It was supposed to be with a neurologist… and to my surprise they had scheduled me in with the rehabilitation, physiologist doctor that worked in the neurology department, not an actual neurologist. Hmmm. This appointment had been set since August by communication with my hospital and the hospital where I was getting the second opinion, and I think that communication lines got slightly twisted. Thankfully the physiologist still holds an opinion and evaluation that is serving to be useful to my surgeon and I.

The doctor came out to the waiting room, introduced herself, and then told me that she thinks they meant to put me with a neurologist (already I am thinking oh F*#@ seriously?!), she continued to tell me that she was the rehabilitation, physiologist doctor and that she had looked over my case and thought that she would still be able to help me and give me an opinion on what was going on. My open mind immediately began to shut. I explained in short sentences, giving pause between each for her to make sure she had it straight and I before I had even gotten far she was already mixing left and right. By the end of the appointment though I felt that we had FINALLY established a proper understanding of left versus right. It took a while, but we got there… I think or rather hope.

My surgeon had taken care to overnight all the images that we had compiled on me since most people want these. Well she, she didn’t read these!! Yikes. But she reads reports on them she told me. Oh great I thought with a large amount of sarcasm. I soon learned that she seemed to be pretty knowledgeable in her field despite this one thing of looking at scans that she does not do. She read through the letter that my surgeon sent over, underlining what she needed found to be key things and then she proceeded to evaluate me. She took everything in and to sum up our kind of lengthy conversation she told me that I have obvious weakness throughout the left leg getting worse as you go distal (torwards the foot) and that there is atrophy to the left anterior compartment (the muscles on the front of my leg involved in things like dorsiflexion). She then said that it is over a year out from surgery, and that she would not expect me to gain too much more in my left leg and that what healing has happened… well its happened, and this very well may be all that I get back. That said, she began to discuss with me the surgical and non surgical options that could be taken with my left leg. Non surgically I can remain in an AFO (just like the pink one that many of you see me wearing around now). Another option is a brace that fits right below my knee and basically stimulates the nerves, and the muscle to allow me to get the normal function needed to walk in my left foot. Surgically she discussed tendon transfers that can be done to give me function back, and the option of fusing my ankle as well.

I spoke with my surgeon, that is working on my hips, after the appointment with the physiologist lady and I prefaced our conversation with either he is going to be happy, or really upset with who I saw. Turns out he was glad and he said that in this instance that was probably a really good person to end up seeing and that her opinion in this case is important. Phew! Now that that was established I went on to talk about the appointment with him. She had discussed many of the same things that he had discussed with me about my left leg which was actually a relief to him and me. He said that she seems to have looked at me very objectively, which is key in a situation like this. I agreed with him on that one, as that is how I felt she took this as well.

He said that this is good and bad news; it is good in that we have more of an answer, it is not so much an unknown anymore. We don’t know the exact cause but we are starting to look at this as a peripheral nerve damage that needs to be addressed. Other options have continuously been ruled out. It is bad because the outlook is pretty bleak for my left leg. My surgeon explained that if there was a quick fix available for my left leg we would do that instead of my right hip because it would make the recovery on my right a little easier that what we are about to throw ourselves head first into. However, there are no quick fixes, they are going to take longer than we have at this point in time. So we are looking at the solutions to my left as phase two, and the surgery on my right hip as phase one. We certainly have a long road ahead.

How does this information affect surgery? Not very much would be the quick answer. My surgeon and I continue to debate THR or reverse PAO, but still come to the conclusion of PAO. It would be easy to go THR because it is a much easier surgery, faster recovery, less invasive, much less risk, I’ve gone over all this with you before. But the PAO holds a lot of promise… if we get it to work. The left hip is stable, and relatively pain free, mostly just sore and stuff, so we know at the level of the hip it works. This conversation is much more complex than what I can put in here.

On a bright note the same day that I went to see the doctor for a second opinion, I drove from MA to VT to go to the Straight No Chaser concert with my aunt and fantastic friend/ roommate. I went straight from the hospital up to the theatre where I picked up my friend and met my aunt at a Mexican place for dinner. Yum!!! It was a short walk around the corner from there to the theatre where the concert was. They are an incredible a cappella group that never ceases to put on a fantastic show! I loved the song selection and really it was just once very entertaining show, that I was sad was over in what seemed as soon as it started! It hurts my hips so much to sit there in those seats for that long but it was worth it. We were only 8 rows back from the stage so we had a great view too! To have a night out in Burlington in great company for a delicious dinner, and fabulous show was just what I needed in the week before surgery. I could not have asked for a better night!!

SNC during a Michael Jackson Medley!

There are only 4 more days until surgery… and the emotions are running through me like wild fire completely uncontrollable. I was cleared by infectious disease yesterday and have to do the staph/ MRSA eradication prep (its just a hibiclens prep and nasal prep… yuck!!), its better to be safe rather than sorry, especially when there are plenty of other risks that we can not control. This is one that we can at least take precautions towards preventing.

Surgery Day: October 30^th

Days Till Surgery: 4

Emi 2 Hips

Life Happens When You Least Expect It… Tales of a journey through bilateral hip surgery.

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