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 1st (Wednesday this past week) I officially launched the website for the FIRST ANNUAL HIP HOP 5K, in the country!!! This race is in support of ALL of us that face hip dysplasia, from newborns to adults (yes it spans that great an age range), and the money raised from the event goes to benefit the Boston Children’s Hospital hip program and the International Hip Dysplasia Institute (Orlando, Florida). Details would probably be helpful huh? Where to register, when is it, what can you do to help us whether you live far away or in the area? All great questions… amongst others… you can scroll to the bottom if you don’t want my little spiel but I promise I’ll be as brief as is possible with me.
For all you who read my blog, and have no clue what hip dysplasia is, well that’s ok I guess but its time to become aware of what it is, who it effects, and the impact that it can have both physically and emotionally on a person’s life (if you have not already learned a piece of that from my blog or if you are just joining us now). Then for all you who have it, maybe you’ll learn a little more, or see it in a different way, I don’t know! So hip dysplasia, simply put means that the bones of the hip joint are not aligned correctly and it prevents the joint from functioning properly. The joint wears out much faster than normal, “much like a car’s tires will wear out faster when out of alignment.” It is also a silent condition, meaning that pain is not usually felt until much later stages making it harder to detect and to treat. About 2-3 infants out of every 1000 require treatment for hip dysplasia. BUT despite this fairly common frequency, the awareness of the condition is poor outside of the medical profession.
For all those who are thinking why the heck should I care about hip dysplasia if I don’t have a severe case of it… well, adults with hip dysplasia should be aware that it is the most common cause of hip arthritis, which more often than not leads to hip replacements. I am sure that you can all think of someone who is in one of those two scenarios. Even more alarming is that more than 90% of the young adult cases can not be diagnosed in childhood by the current methods of screening. We clearly need to develop not only better means of detection but also treatments for the condition.
How was that for short? Two paragraphs and a simple overview is complete (for now). So back to this road race…
The INAUGURAL HIP HOP 5K in the country is set to happen in Easton, MA starting at the Oliver Ames High School on Saturday August 24th, with a 9 am race start. There are full details on location on the official site that I built up for the race, www.hiphop5k.kintera.org
The Hip Hop 5K is a One Hip World event… a group that I am VERY proud to be a part of now!
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!)
Our OFFICIAL RACE WEBSITE (with all the details and contact info if you need help!)
Official Race flyer… visit the website for more details!!