Update 1 week before Uma's 2nd Bday

I know it has been a while since I last wrote. In fact it has been a long while and in this case no news could be considered good news. So what has been happening with lefty?

In March I went to see Dr. Schrader pretty sure that I would be having surgery sometime before the end of the year. The pain had gotten to a point where it was consistently present each day to a level that made me think that I was starting to decline enough to seek advice. I had said to myself that if it did not subside in 4 weeks that I would go and visit Dr S. He took xrays and found that that my hip space looked good and that there were no apparent issues with my ability to have surgery. A MRI would of course tell him much more but he said not to consider going through one, more than 3 months from a surgery date i.e don't do it until you are sure. So I left his office feeling calmer knowing that I would yet again be in good hands when the time was right. It just so happened that a day or two later the pain subsided as if Dr S scared it away.

I decided to keep a pain journal so that I could track the course of my hip's cycles because lefty is taking a different course to Uma. This has been quite disconcerting because when Uma started to decline it pretty much was a steady downward slope. Lefty is more like a roller coaster with many ups and downs. There are times I just wish that it would make it's damn mind up one way or the other so that I could have some certainty as to what is ahead of me. It's frustrating and annoying sometimes. Not that I want to rush into surgery or have it at all for that matter. So back in March after seeing Dr S I started keeping a pain journal on my iPhone to keep track of daily pain levels, major differences, basically anything that would cause the pain to shift or change. What it has shown me is that my memory has a strange way of recalling pain, I would imagine that I am not the only one. When asked how I have been, my memory of the pain is not accurate. On the whole I remember having less pain for longer periods of time than what has actually happened. I highly recommend keeping a journal for yourself. For instance I have found that my period makes the pain worse a few days before, during and a few days after. Dislocating my toe on my right foot caused pain in my left hip because it had to compensate for my limp. And then more recently I have noted that I now have pain sometimes when standing on hard surfaces for a period of time and on only a few occasions pain or discomfort when walking. About a week ago my girlfriend commented that I was limping which is the first time that anyone has mentioned it. Strangely enough this happened in Costco the place where Uma first went pear shaped. I don't yet have the terrible night pain so I am getting sleep which is a wonderful thing. What the journal has done is allowed me to see when new symptoms have started and if they increase in occurrence because we tend to forget such things.

Lefty is still not at a point where I think surgery will happened soon but I won't even attempt to guess yet when it will happen. All I can say is that it is getting worse but I still have many good days and there is a cycle to things. I'll have 2-3 weeks of pain and then a 1-2 weeks of little pain. My notes on my pain level are a score out of 10. 10 being the level at which I believe I should be having surgery. So on average I range between a 3/10 and a 5/10. To date I have not gone higher than a 6/10. Truth is it's even hard to remember what a 2 feels like when you've had a 5 for a few days in a row. My mother told me that we are actually not able to remember pain and I think she may be right. I should research this further just out of interest. When I start getting into the 8 range I will reconsider and probably have the MRI. Everyone is different in how they feel things. This is the system that I have chosen for myself and it makes sense to me. I'm sure you'll figure out the best way to document it for yourself.

We have a trip planned to South Africa in March. I will not do anything before then. We'll see what happens after. April isn't a bad month to do it, this is merely speculation at this point, but any way spring makes sense because by the time I would be allowed to walk again the weather will be nice enough so that I can start swimming and building muscle strength. So this is all I can report for now. Life otherwise is good overall. I hope you're all well. Please feel free to reach out if you need to talk. Ciao for now.

Happy New Year!

I just wanted to write a quick note to wish all my hip sisters a very Happy New Year. I have labeled this year 2000 Divine and I hope that it will turn out to be that way for all of you.

My RPAO is feeling fabulous and I can now say that it feels like nothing ever happened. Well except for my beautiful scar that reminds me each time I look down how very lucky I am.

Lefty for right now is just an irritant. At this point I am not considering surgery. When she decides to truly start declining then I'll be the first to document my second PAO journey. Currently I am enjoying being able to function well and with only mild discomfort some of the time. So my previous blog entry jumped to a conclusion a little too quickly. It is true that the week of my last post lefty was seriously bothering me and I did think it was the beginning of the decline. For some reason she changed her mind and for now has decided to pull her act together at least for the time being and I'm certainly not complaining about it.

So until there is any real news of worth to report, please understand that no news is good news. Happy 2009! Feel free to drop me a line if you have questions or just want to say hi. Ciao!

Happy Birthday Uma – she turns 1 today!!

Obama’s victory will always overshadow Uma’s birthday yet the 2 will be tied together for the rest of my life. I can’t begin to express what a year it has been for me. Those of you who have gone through this surgery understand, and those caregivers, family members, mothers, fathers and husbands know too what a triumph standing, walking and regaining independence is. Today I sit thinking about how Obama’s win and the rebirth of our country should be my only memory of November 4th 2008. Yet the bittersweetness of the day resides in the fact that our country’s worldwide redemption will always be tied to the decent of my left hip. As I stood in the snake like line waiting to cast my vote my left leg truly spoke to me for the first time. I have known for a few months now that something was not right but wondered / hoped that it was still learning how to cope with Uma. Standing in line it spoke and said quite plainly “me too!” I still hope that it is merely my left dealing with the new found glory and re-structure of the right but deep down I am pretty sure that I am 6-12 months off being the next one under the knife. Let it be known Schrader that this time it will be done in 5 hours, 7 is not an option. Uma is a tough act to follow. She is now strong and doing well. So pull out the big saws doctor because Uma’s sister won’t go down without a fight.

My latest brainchild

So just a short update for me today. My team and I have been working hard to bring my latest business idea to life, http://www.explore404.com. I think we're on the right track to a great site so keep checking back as we will go live in the coming weeks and will continue to add entertaining content.

As for the Uma, she is well. We will be stopping physio next week. I have gotten far and will continue to do exercises at home. The muscle still has some stregthening to do but both Mark, the physio, and I agree that I can take it from here. I feel stronger than ever, other than when the muscle catches on the newly grown HO (new bone). I actually forget about my hip for whole stretches of time now. Which makes me wonder can I now say that I HAD Hip Dysplasia in my right hip? Are you ever cured? My hip feels pretty darn close to normal these days almost like none of this ever happened. I guess you can't ask for more than that : )

The day is finally here

So for months and months now Sarah and I have been hinting at something big that we have been working on. Well the day is finally here for us to share it with all of you. My only request is that you spread the news and add the link to your respective blogs.

I contacted Sarah last year to see if she was interested in co-authoring a wikipedia article on Hip Dysplasia. We all know how hard it has been to find information. Sarah said yes and we began. Over the following months we worked hard and I finished up my part over Christmas while I recovered from my PAO. In January we were ready to go and unfortunately I dropped the ball. Sarah waited patiently. I believe it was some time in March (Sarah don't hold me to this) when I learned the code needed to publish our article on wikipedia. We were up for 10 glorious minutes and then yanked down with no explanation. Needless to say we were both devastated but willing to work on finding out why and what to do in order to keep it up there. In the mean time, my mother, met the founder of the site How Stuff Works (they've just been bought by Discovery) and through discussion it became evident that they did not have an article on human adult or child hip dysplasia. And before you knew it How Stuff Works was working with Sarah and myself to get our article published on their site. The HSW editors tweaked our article quite a bit in order for it fit the style of their site but we are ecstatic none the less.

I want to thank How Stuff Works for working with us and helping to give us all a voice. Now ladies it is up to all of us to spread the word. Perhaps this will be a way to help one more hip sister find out needed information before it is too late and THR is her only option. So go team, get the word out!

And of course I have to thank Sarah for her patience and being my writing partner. It has been a long and wonderful journey of us meeting in various states but we finally made it. Yay us!

P.S Other than the FO and PAO x-rays we had nothing to do with the pictures chosen i.e the happy woman using millennium crutches was not our doing. In fact I believe the old fashioned crutches work best but that is a personal opinion. Not to mention that none of us looked that happy post surgery.

PT is worth all the pain

I just got home from having drinks with Sam and it was fantastic to catch up and share stories. I walked away from tonight with 2 overwhelming thoughts. Firstly, I have met some truly amazing and courageous woman through this experience. You are all so beautiful in your strength and through your journeys. Thank you to each and every one of you for sharing your stories with each other and me. As Sam and I talked about tonight it is so clear that when you are first diagnosed there is so little information out there and when everything is so fresh and scary any helpful voice is welcomed. Second, our talk reminded me of how each of our journeys are so different. That no one way is more right than another. Even the muscles that Sam and my physio's are working on are different. We both agreed to share our exercises with you in the next few days/weeks, so stay tuned. However know that your body may need something completely different to get you back on track. At the end of the day you'll know what's right because if anything, this journey, this surgery has helped you get far more in touch with your own body than you probably ever were before.

So all of you amazing woman when and where are we going to get together and do this reunion? I'm even happy to do it in Atlanta because I can provide free accomodation to everyone. I don't care where or when but let's start planning. Someone throw out an idea and let's get this ball rolling. None of us are getting any younger, although our hips are ; ) I'm happy to coordinate this, just give me some ideas. I think we should do a weekend together and it could be in NYC (which seemed to be everyone's favorite idea when I brought this up last) or we could choose somewhere cheaper and rent a house. I think the location is less important than just getting us all together in one location. E-mail me phone numbers or e-mail addresses and we can arrange this quicker away from the blog. I look forward to hearing from all of you.

Uma's one tough biaaatch!

So I thought I would put my leg to the ultimate test and yet again Uma came through swinging. What did I do you might ask? Having thrown myself down a driveway and the various other activities ones gets up to on a day-to-day basis what now? Well I'll tell you. I stood on concrete floors, only sitting for 2 or 3 minutes at a time, for a total of 26 hours. Why on god's green earth would I do such a thing? To direct the short film linked below.

My team participated in the 48 Hour Film Project. In a nutshell you have 48 hours to write, shoot and edit a 5-8 minute short film. From 7pm Friday until 7pm Sunday you run your ass off with little to no sleep. The awards ceremony took place this last Monday and my team won best screenplay and best cinematography. Yay team! What was especially awesome was as I stood at the front of the theater as a team leader / director I was the only woman up there. Yippeee! We rock ladies. So I hope you enjoy the link below. What else should you know, oh, on Friday you pull your genre from a hat. This helps to keep the pre-planning to a minimum - we pulled Sci-Fi. And then every group is given a prop: frozen drink, line of dialogue: "What do you mean, we're out of it?" and a character: Sydney or Cinthia Vintia to work into their script. 45 groups competed, 35 got their's in on time. And this 48 Hour is now run in 69 countries. So all in all we had a lot of fun and will be sure to do it again next year.

http://www.youtube.com/watch?v=HXyzGn2GYaA