running | Emi 2 Hips

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!!

“Come on Daddy!! Finish Strong!!” The wind was blowing, temperatures were just barely reaching the lower 40′s. I insisted that no matter what the weather, no matter what condition I was in I would be there, I would be there on that day; this was a long time ago I promised this. When I found out my surgery date, my dad said that I most likely would not be there. I still insisted I would be, even if we had to take me from the hospital. Of course I was only half kidding about the whole hospital part, but that was truly how much I wanted to be there.

Well, this past Sunday we woke up to a few inches of snow, around 5 am, and by 5 30 we

Beginning banner

were wheeling my wheelchair down the back walk down the narrow pathway my dad had shoveled to the car. On the Cape conditions were not supposed to be much better; wind gusts could be up to 60 mph and the temperature was not expected to rise much above 40. The ride down would be a bit over an hour and then I would be in my chair for a good long while. None of these conditions were hip friendly, and yes I would absolutely pay later for it al; however none of that mattered because I was going to be there NO MATTER WHAT to see my Daddy run his first marathon.

At the start of the race we saw him off, the beginning of his 26.2 Mile run with which his goal was truly to finish in under 4 hours. He had spent the last few months of training nursing a few injuries. In a few seconds over 2000 people had run by us and in the blink of an eye my Daddy had gone by; I found myself wishing to see him run with the biggest smile over that finish line and say he finished.

At the same time I started to wish the same thing, figuratively that is! Don’t we all have moments where we wish we could just skip from point A to point B and cross that finish line? When my hip journey started, is not when my first surgery occurred, its not when I started meeting surgeons, it IS when the pains started to interfere with my life; when my mind knew that at some point either this was going to get better or it was going to take a turn for the worse. Unfortunately that day long ago, the latter happened, and you do your best to keep going.

However, I then ended up having to meet surgeons, and then found myself in the midst of surgery, and by that point in time the thought, “Where in the world is that finish line, I must be near it by now?” starts to enter my mind periodically. Over time it comes more frequently, but that just means I have to continue to draw on all the positive aspects of this experience.

To be positive though, does not mean that I live without the bad days; OHHHH no my friends, I live with the good the bad and the ugly. My greatest downfall is when I start to miss what I used to have, what I used to do. I get trapped, and it becomes extremely hard to get myself out of the cycle. I miss being able to run, dance, and ski, not to mention walk. The day of my dad’s marathon I hit all of these. I can’t walk and everyone is walking around me. It snowed, which reminds me of winter and how many I have missed skiing, dance friends were a part of the days conversation, and my dad was running a marathon. I can not do any of these, nor will I be able to any time soon. The only one that may happen in the next year is walking.

I do not have anything active to substitute in for what I miss, though I do my best to stick to some more stationary hobbies like baking, but they do not take the place of anything; they are their own entity. ‘ thoughts like these that overwhelm my brain at times, and often at the same time as the question of school.

Back to the marathon though, lets divert my mind from these thoughts a few moments

Crossing the finish...

more, as they will not be pleasant ideas to fall asleep with in mind (as I all too often do). All of 3 hrs, 39 minutes and 19 seconds later my Daddy was running across the finish line with the largest smile on his face I have seen in a good long time. I wanted so much to have been able to run with him, but throwing that aside I was PROUD of my dad for setting his mind to it and over coming all the obstacles he had to in order to accomplish what he dreamed of doing.

One big hug, from daddy's very proud "little girl"

We all have our hopes and dreams, our “finish” lines, both the journey and the end are important but we mustn’t rush to get there. The journey may be filled with bumps, hills, or mountains, but each one teaches us something; whether it’s to train for better downhills (daddy ), or like myself the many mountains in the way have taught me everything from patience to assertiveness. So today, I hope that you all figure out where you are on your way to the finish line no matter how far away it is. To Daddy, I hope to be there for many many more marathons and races, and hopefully be running with you again some time in the future!