Saturday, March 6, 2010

Hip Dysplasia Awareness Campaign

Hi All!!

Nothing new is really going on with me pain wise since I wrote last, except for my knees have been giving me crap lately. A few days ago was the worst........ I had the hips burning, the knees screaming, and my left ankle whining (ever since the swelling I showed you on my first post) .......... I still don't know whats up with my ankle.... they've taken numerous X-rays and say that everything is "fine" ...... so whatever.... I think im going to talk to Dr. Santore about it when I see him on the 16th...... I know he doesn't really deal with ankle/foot issues.... but i'm sure he'll have more to say than all the idiots i've talked to about it up until now.
Let me just say how relieved I am to have Dr. Santore as my surgeon!! He is HIGHLY well regarded in this field, and everybody I have talked to who has had him as their surgeon can't say enough about him. I am also extremely happy that he is LOCAL.  There are only a handful of surgeons in the world who are capable of doing a PAO, and a lot of my Hip Chicks have had to travel to different states to get their surgeries done, so I know that I am very lucky in that sense, and I am so thankful for that!!  I got the package of paperwork from Santore in the mail the other day that I need to have filled out by my appointment on the 16th.  On the paperwork, he wanted to know all of the doctors i've seen and all the procedures and tests i've had up until this date..... I have been to SOO many different doctors and have had SO many tests run on me, that I can't even begin to remember them all... I know that the paperwork is just general and he's just trying to get an idea of what i've been through, but I want it to be as accurate as possible for him, and I have until the 16th, so yesterday I called the records department and had them print out all the doctors appointments i've had since 2007 ....... many, many, many appointments!!  So anyway, it's finally time for me to fill out my paperwork, and start getting my questions written down for my appointment........ I can't believe its actually happening!!!  and now I know the importance of writing down my questions to bring with me....... because before I actually got approved to have my appointment I had ALL these questions in my head to ask....... and now that I actually have an appointment date, and im trying to write down my questions....... I'm coming up blank!   So for any of the "newbies" ....... seriously...... WRITE DOWN YOUR QUESTIONS!!   As elementary as that may seem to you, or as much as you might not be a  "list" person...... just write them down...... if you don't need them, then you don't need them...... but if/when you get into the exam room and you're faced with the surgeon who is going to hack your bones apart and then screw them back together again....... you just might come up blank...... just sayin.

 So I've been trying to find some video's of PAO's or anything Hip Dysplasia related to add to my Hip Chicks site, and I was getting extremely frustrated and actually quite pissed off that when you google or search Youtube for Hip Dysplasia the majority of the stuff you're going to find is about Hip Dysplasia in Dogs!!!  ARrrghgh!!!!   I LOVE dogs..... don't get me wrong..... But really??  Hip Dysplasia is a HUMAN condition also, and there is NOT enough information out there....... especially when it comes to information for the adults who have just been diagnosed because of slipping through the cracks as infants and not getting diagnosed.  It sucks.... it really does..... and what sucks even more is that because not very many people or even DOCTORS know much about it, and because it is kind of a "silent condition" meaning, it can't be SEEN..... our pain is not always taken very seriously.  TRUST ME...... just because I have a smile on my face, DOES NOT mean that I am not in pain. Just because I LOOK like I can walk for more than a city block, DOES NOT mean that I can. Just because I am 28 years old, DOES NOT mean that my hips are not falling apart, and that I am "to young" for Hip Surgery.   The stigma out there that Hip Surgery is only for your 80 year old grandma's Hip Replacement is frustrating, and really quite stupid!! 

Sooooooooo  with the encouragement from my Hip Chicks, I have decided to start a Hip Dysplasia Awareness Campaign. I have been wanting to concentrate and work on my photography anyway........ so why not use it for something I am passionate about!  I am going to be doing a series of Hip Dysplasia Awareness aimed Photo shoots........... think the " Got Milk?"  Ads..... for starters....... I have a lot of ideas in the works, and I'll post them as I do them........ but I don't wanna say to much about it right now as i'm still trying to get everything together.  All I know is that I am going to need a lot of help and support from my friends, family, and hip chicks......... because spreading the awareness is not an easy task.

I'll leave you with a funny little comic that one of my Hip Chicks, Amy, had posted on her blog. I found it quite funny :)

4 comments:

  1. I hope I can help some on your project. I work on an ortho floor so I plan on using whatever materials youn come up with to educate our surgeons. They mostly do replacements and aren't qualified to do a PAO, but they are capable of making referrals! I'd like to also reach out to any new patients they find and maybe have a local support group. What do you think? Ill try to get my sis to take lots of pictures in the hospital and you're welcome to use any you'd like. Maybe of the equipment or of PT or something. Let's brainstorm! I'm here for you in your journey too. Want me to send you the questions I used in my appt?

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  2. Hey Amy! Thanks! A local support group would be awesome... As soon as I am able to come up with some advertising material to have printed and sent to the people who want to distribute them to their OS office and PT's offices, then I think it would be a great idea to maybe make groups on Hip Chicks for your particular city so that once the "newbies" get the advertisements for Hip Chicks and are able to join, then they will know who is around their city..... And yes, any pictures you take, of the equipment, of you doing PT, or whatever would be helpful... people love pictures... most pay attention to pictures more than words anyway. Marcie sent me her questions as well, but yes, i would love to see your questions... you can never have to many :) Thanks girl!! xoxo

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  3. Just remember no question is a stupid question so ask away. And if any questions come up after meeting with him, call him back and ask him. I also would really love to help you with getting the message out. The word needs to be spread. Just let me know what I can do to help out. I also plan on taking pictures during the stay and afterwards. For me it is kind of like a momento to my road to betterness.

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  4. We seem to post about the same time! It is just too funny. And we both are hurting worse and worse. We just need to get this surgery done so we can be on our way to feeling better.

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