Saturday, April 10, 2010

I am Moving...........

I am moving to a new blog :)   I transferred all my posts over to a new and improved blog set up...... and i've already uploaded a new post!  come see it and say hi!! Love you guys!!!

It's a Hip Chick's World

Monday, April 5, 2010

I'm alive

Hey everybody!  Ok..... so I know its been awhile since my last post, and I was planning on blogging right after my CT and Bilat Arthrograms last Wednesday...... obviously that didn't happen, So i'll do that now.

On Tuesday night I decided to take one of the pills they gave me to calm me down a little since I was already freaking out and I didn't think I was going to get that much sleep. When I went to look at the pills, I realized that they were not Valium..... they were something generic for Xanax, and they were only 0.5mg per pill. Now I realize i'm not a doctor, or a nurse, and I know nothing about medicine and the correct dosages... but to me 0.5 just seemed small..... but whatever, I went with it,  I took one before bed on Tuesday night to see how I would react with it...... It did nothing for me whatsoever....... but I managed to get to sleep that night pretty easily or easier than I had expected..... so maybe the pill did help after all..... I don't know.   So Wednesday morning...... woke up.... and i'm freaking out already..... i tried to sleep as much as I could to pass the time..... I ended up getting out of bed around 10ish...... I played around on the computer a little.... and I couldn't keep myself calm, so I decided to take a hot bath and try and relax..... whenever i'm not feeling good I always run to the bath, i'm not sure why..... its just become a comfort thing for me....... I had three of the generic xanax pills left, so I decided that I would take one an hour before we left and if it wasn't helping me any while I was there, I would take the other two while I was there..... so thats what happened. We got there and I had to check in with the people who did my CT...... I checked in, did my paperwork, and then got called back pretty quickly....... the CT itself only took like 5 minutes.. not a big deal...... so then they walked me over to check in with MRI...... i filled out my paperwork, and then back I went to the CT people because thats where they do the injections for the Arthrograms ( they are in the same building, like two doors down) ......... we were early, but they took us back and the Radiology Tech who was going to be assisting the Doctor during the injections came and talked to us, explained what was going to happen and everything...... he told us that I could pick one of my parents to go in with me..... seeing as how I was going to be *ahem*  semi-exposed...... I choose my mom, haha. :)   ......... so the tech takes us into a room to explain everything to us, ask me questions and such..... which is when i proceded to tell him that i was "freaking out" ....... a tiny bit embarrasing because he was pretty cute, but he was really cool about it, tried to calm me down and told me i was going to be fine........ i think the xanax started kickin in by then, because i believed him... haha....  well we were running early, so he told me i could wait for about 15-20 mintues before I had to change into my gown if I wanted to....... so I waited for awhile and then just decided to change ....... i changed and came out and sat for about another 10 minutes........ and when he came to get me and my mom, he saw my arm........ my fully tattooed arm....... and I just KNEW what he was going to say......... " oh come on!  If you have that done to your arm, you're going to be FINE in here" ....... haha.... i know, I know!!!   I told him it wasn't the same thing!  Cause it's not! ...... and he also reminded me that
 " yeah, but we're going to numb you...... i KNOW they didn't numb you for that!" ........ :)  true, true....... he wins........ but only cause he was cute ;)
So the procedure....... seriously...... a piece of cake!!  yes, I know...... i freaked out for NOTHING.... I'm not sure if it was the xanax making me feel extremely calm that helped me not feel anything, or if it just really didn't hurt that bad........ It was nice that I had a few distractions during the whole thing, with the tech (Bryant) and the Doctor ( Dr. Puckett)  talking to me about my tattoos and asking me questions the whole time.  I seriously didn't feel a thing..... not really even the prick of the numbing needle....... it was awesome..... I watched it on the monitor which was pretty cool..... and then it was all over...... and done all over again on the left side.......  after I was all done , i was walked over back to the MRI place and taken in for my MRI....  I didn't realize at the time how much the medicine was effecting me because I didn't feel weird or anything..... but the minute I got into the MRI machine.... I don't remember much..... I must have fallen asleep... for almost an hour..... but I do remember waking up in like the last 10 minutes in so much pain..... my left hip/leg was hurting so badly from being in the position that they taped my feet together in for that long..... and the last 10 minutes was horrible knowing that I couldn't move!!!    My mom and dad and I went out to Chilli's for lunch/dinner aftewards.... and when I got home, i went upstairs and told them I was just gonna lay down for an hour or two........ nope...... i was OUT....... all night and all morning the next day.....  When I woke up my left hip felt fine, but had a bruise from where the injection went in...... and my right hip hurt, but had no bruise....... go figure......  for that whole day I couldn't really put pressure on my right leg without having the feeling that it was going to completly give out on me..... so I babied that hip for the next day or two, and then it was back to the "normal" pain that I have in both hips.
I called Dr. Santore's office the next day to make sure I told his assistant henry that I had the tests done and that they should be expecting them...... I also told him that Dr. Santore told me that i could just talk to him over the phone because of all the problems i have with my insurance trying to get approval to see him......  Henry said " ...... oh, i don't know about that..... he didn't say anything to me about that... but i'll let him know about your tests, and tell him that you want him to call you " .......... so i decided to call the referring OS back and tell them that I need to put in for ANOTHER approval to see Dr. Santore.......  IF she would have done it right the first time I wouldn't have to put in for another approval..... *Most* nurses put in for an initial consultation AND a follow up........ and my nurse only put in for the consultation..... so now I have to go through the stupid process of trying to get another approval to see him to go over my test results and talk about surgery........ which I am hoping is not a problem because Dr. Santore is not the one who officially ordered the tests since he was not on my insurance..... Dr. Ezzet ordered the tests FOR Dr. Santore..... so I hope I don't run into any problems reguarding that................  I did my usual calling today when i got back to work...... called my medical group to make sure the request was put in, and then called Dr. Santore's office to make sure that they received my tests results from downstairs..... and Henry said that they did recieve them and they are on Dr. Santore's desk along with a note that I want him to call me........ So .... thats where I'm at :)

I was hesitating on posting this blog because I am switching my blog over to another place..... a blog that I paid for, and that I have more control over what I want to put on it and one that i can customize more..... I was hoping to have that up this weekend and be able to have it all set up, but that hasn't happened yet..... sooooooo...... I thought i would just post an update on here anyway.... I am going to try and get my new blog up this week, but I have a Senior Graduation Invite to make, and I have a Senior photoshoot this weekend, and a few other things going on, so i'll let everybody know when i've made the switch to my new blog...... but for now..... keep checking here :)

Wednesday, March 24, 2010

Success!!!

Apparently I DID make enough of a ruckus yesterday with my medical group and insurance company....... as I said in my last post..... that I was going to try and sit patiently.... well TRY was the key word..... and it didn't work... after my last post, I was still fired up, so I called my medical group back and had them send another, yes another, email (they had already sent one earlier in the day) to my Insurance company, telling them that it should have already been done and that it needs to be expedited........ after that call, it was already around 5pm, which is when all the medical offices shut down, so I was done for the day....... so that brings me to this morning.... again... i tried to wait patiently for them to call me....... but i only made it until 10am and then i started calling people....... well its a good thing I did because turns out they did get a response, just never bothered to call me...... apparently the Arthrogram didn't need approval....... and they approved the CT..... So GREAT! Perfect...... ok, so now all I need to do is call my doctors office and have them fax a copy of the order for the tests and the approval to the Imaging place before I can schedule...... So i call and leave a message with my doctors office requesting that they do so....... and i call the imaging place letting them know that my doctors office should be sending them over the information........ the girl tells me ok, and that she will call me to schedule when they get the information........ so a couple hours go by and nothing........ now i was trying REALLY hard to not be annoying by calling all the time, but it was really hard!!  My boss called in sick today, so I was in the office ALL alone, with nothing to do and nobody to talk to........ sooooo I couldn't help myself. :)   So i call the *nice* lady's back at the imaging place to check and see if they had gotten the paperwork they needed from my doctors office...... she checks.... and, oh yeah... they did.... but the only thing sent over was the test request and not the authorization........ so she has to call my doctors back and ask for the authorization........ UGHH!  GOOD thing i called because otherwise it would still be sitting there..... so I sit for another 2 hours *patiently* waiting to hear back...... nothing..... so i decide to call again......... and oh gee, what do you know....... they have the authorization, but just never called me back.......

Ok.... now I realize that I might sound like a Biotch, or maybe a little impatient to some people who might be reading this......... but seriously.... I'm not TRYING to be annoying to the nice health care workers........ I understand that its not all about ME........ and i'm not the only person they are dealing with, and the only case they have to take care of....... but that's just it...... I am just a CASE NUMBER to them....... the majority of them could really care less that by just faxing a simple letter or pushing an "authorize" button that it could save me hours and days, even weeks of pain...... If i wouldn't have gotten the authorization this week, then it would be until next week, and then if they Imaging place was booked then i wouldn't be able to get an appointment until the NEXT week..... I know it doesn't seem that long....... and really ... it's not..... for somebody who is NOT in pain every single day....... for people who suffer with chronic pain time is EVERYTHING when it comes to working on a plan to get you pain free.

So...... anyway..... after many, many phone calls today, I FINALLY have my appointments set!!  yay!!!!  I have my CT at 1:15 and then I have to check in for my Bilateral Arthrograms at 2:15 ......... Wait... Bilateral???  YES!!  BILATERAL!!!   (Insert me freaking out RIGHT HERE!) ...... As i was on the phone making the appointment, the girl was reading, more to herself, but out loud the order for the tests as she was putting them into the computer.... she says "  Ok.. we have a CT... and Bilateral Arthrograms...." .......... i said "uh huh ....... Wait.... WHAT?  Did you just say Bilateral??'  and she said " Yup" ........ I said " Ummm no... I thought it was only supposed to be for my right hip" ........ shes quite for a second... and then says " Ummm.. nope... the order right here (as i hear her shaking the paper as if i can see it)   says Bilateral" .......... i respond with..... " Oh...... Ok...... " ......... as my blood pressure spikes to an all time high i'm sure........ Bilateral?? really??  You're really gonna stick that long @ss needle in BOTH of my hips??   I don't understand why this is such a problem with me.......... I am not afraid of needles by any means...... shots, IV's, getting blood taken, tattoos....... all no problem...... but for SOME reason... just the thought of this is making my skin crawl.... I am seriously freaking out.......  and I know some of my hip chicks say it's no big deal...... but then i've heard some horror stories as well....... and i'm sure that a lot of it has to do with the technician doing the insert and everything....... but I think maybe its just the thought of them sticking a long, thick needle into an area that is already inflammed and sore....... its like my tattoo artist going over a spot that he has already done when its all swollen and inflammed......... I guess thats the feeling I imagine, and I am NOT a fan!!!   Definitely asking my doctor for some Valium!! :)    One good thing is that my fellow Hip Chick Alycia is most likely going to be taking me, so that will make me feel SO much better!!  Being there with somebody who has already been through it and knows how i'm feeling.......... If she's not able to, my ex Wes offered to take me...... and he's always been able to comfort me and make me feel safe, so either way, I win.  ;)

Tuesday, March 23, 2010

Stirring up a ruckus!!

So I am currently waiting for the approval to have the MRI Arthrogram and the CT that Dr. Santore wanted me to get. I had to have the doctor who referred me to Santore, Dr. Ezzet, order them because he is on my insurance plan, so it really shouldn't be a problem for them to approve those tests because i've already seen him and it could be a part of his work up as well........  easy right?  Apparently NOT!  gosh, I swear,  being your own advocate in the healthcare world should be its own freakin full time job!!  I am SO sick of being referred to and transfered to everywhere but where somebody can help me!  I called the place where I want to get the tests done just to see their booking time and how far out they book, and its only about a week out...... which isn't to bad really...... but it just seems like FOREVER when you are in pain, and when this is part of whats holding back the doctor from finding a path to fix me!!  I can't make my appointments until I get the approval...... so the longer it takes for them to approve it, of course the longer its gonna take to get the MRA appointment......... I wish i could just sit back and let them do their jobs...... BUT THEY DON'T!!  I've learned from the first time I tried to sit back and let them do their jobs that it doesnt work.... it put me back a whole month on even getting to see Dr. Santore...... so now I feel like I have to be on their butts making sure everything is going where its supposed to be going and everybody is talking to who they should be talking to....... but its kinda hard to do that when i'm not even sure whats really supposed to be going on...... all i know is that my medical group and my insurance company doesnt seem to have very good communication between them so things get dropped into a black hole until i call and make a fuss...... and then I feel bad for making a fuss and for being annoying, but GEEZ!!!  do your job and I won't have to do it for you!!!!!!

Also... would this stabbing sharp pain hitting my lower back and hip joints please goooo awayyyy!!!  I don't have the time or the patience for you!!


Ok..... my rant's over....... i'll try and sit here patiently........ but i can't promise how long that will last..... hopefully i've created enough of a ruckus between my medical group and my insurance company to get an answer by tomorrow.

Thursday, March 18, 2010

Embarking on another journey

So now that I have had a few days to sulk and feel sorry for myself, I'm done.  I am still really discouraged, and sad, and frustrated, but that isn't going to get me anywhere. Before I get into the rest of this post I just have to say THANK YOU for all of the people who responded to my last post. You guys are amazing, and I am incrediably lucky to have all of you in my life. Having this condition, and the issues that I have is not life threatening, I get it........ but it is extremely painful, frustrating, depressing, and very hard to deal with alone, and in a way, a part of you does die........ the longer you deal with chronic pain, the harder it is to keep that smile on your face, and the positivity in your heart. But i'm not done fighting it, and I have an awesome support team and I hope you guys know how much you mean to me!!!  xoxoxoxoxoxo

So I forgot to mention in my last post, that Dr. Santore wants me to lose at least 30 pounds. I am at least 30 pounds over weight, I know this...... and I know that it is NOT helping my hips. But the reason why he wants me to lose the weight is because he said that when we end up doing surgery, the more fat he has to cut through the harder it is for him to see inside and get placement right and such........ which I totally understand.  Losing the weight is not going to fix my issues..... they are structural issues, and I was still in pain when i was 30 pounds lighter, but I know that it will help to ease a little bit of the pressure and if it helps with the outcome of whatever surgical path Dr. Santore decides to go down then I need to do it.  He told me to do Weight Watchers, or stick to a strict 1200 calorie diet.   He said " if you want a glass of wine.... have a glass of wine, but count the calories........ if you want a hamburger, have a hamburger, but count the calories... and DON'T CHEAT!"  haha, he knows me better than he thinks!!   ughhhh!!  I am SOOOO bad at cheating!!   But I can do this!!!    My mom asked him if I can lose that much weight just by doing that without excercise and he said " oh of course.... how many pictures have you seen of fat people in a concentration camp??  None!  They don't get any exercise, they are stuck in a cage.....  if you don't have the calories coming in, you can't keep the weight on" ............ haha, so that's an idea of Dr. Santore's humor ;)
Well, i really wouldn't say humor, because he was being serious, haha! :)  But yes....... he's right..... I have not seen any pictures of "fat" people in concentration camps.    So thats what I am focusing on right now to TRY and take the focus off of the waiting of approval for the next set of testing that I need to figure out what path to go down.  Anybody who knows me, knows that i LOVE to eat..... and i don't just love to eat...... apparently I only love to eat the stuff that is SO bad for me!  I've done a good job of getting away from all of the soda I used to drink..... but I just love fast food and junk food, and I am SO not good at eating my Veggies :(     A fellow hipster has told me about this calorie counting website....... it's called http://www.fatsecret.com/ ..........  you can track your weight, your food, your calories, your fat, your carbs .... even your weight watchers points if thats the "diet" you're doing........ and you can have buddies on there, and you have a journal if you want to write ...... it's just a way of keeping track of your eating habits, and having other friends who are doing the same to keep each other on track and to cheer each other on....... i've already gotten one of my friends to join and be my buddy....... so if you're a fellow hippie trying to lose weight and get ready for surgery, or are trying to lose the weight you've gained after your surgery, or even if you're not a fellow hippie, and you're just trying to lose weight....... join me on that site!!  You can search for me under the email krystalclausen@cox.net......... i don't think i used my real name.... but you'll be able to recognize my picture that I used since its the same one on this blog.......  I would love to help motivate you on your weight loss journey, and I would love to have some more support.

So there we have it........ Im embarking on a weight loss journey to help aid in and to take my mind off of my hip journey...... join me! :)

Tuesday, March 16, 2010

Not what I wanted to hear............

Well........ today did not turn out like I had hoped.  My hope was that I was going to be able to go into Dr. Santore's office...... he would look at my X-rays and say " Yep.... I can fix you with a PAO...... lets do this!"....... haha..... thats not exactly what came out of his mouth.  Turns out I have more problems than I knew I had...... I not only have dysplasia, I also have Femoral Acetabular Impingement (FAI) of both the Cam and the Pincer on both hips, and he is also pretty sure that I have some labral tears.  He basically said that he doesn't know how to fix me.........  He said that its not a clear cut case, with a clear cut solution..... usually when somebody has limited range of motion in the front or the back, they are pretty open in the other area, so that he's able to do a PAO and he has room to move the pelvic around into a better position to get the desired range of motion......... well that's not my case..... I am both too tight in the front and the back...... so he has no room to play around with and move my pelvis anywhere..... if he moved it back to open the front, that would make it to where i can't move my leg backwards at all, and vise versa in the front.  He also said that I am abnormally flat footed, especially in my left foot...... so that is also causing some issues as well.  He doesn't want to do one surgery that is just going to cause or worsen other problems, so he's kinda baffled at this time. While doing his range of motion tests, my hip popped a few times on the left, and he had his assistant mark it down as a "one" ...... and then he moved to my right hip... it popped so loud that he jumped back! haha! he said " Woah! Write that down as a Three! You can hear that all the way from across the room!" ....... and then he was doing a certain range of motion with my right and it popped... he did it again.. it popped... he did it again and it popped... then he says " Yep... did it three times... popped three times"  haha!!  He was making sure that it wasn't just a fluke the first time apparently... I think you had to be there to see how funny of a little bald guy he is! :)    He wants me to get a CT and an MRA done so that he can get a better picture of my bone structure and so that he can confirm the labral tears.  All of this is NOT what I wanted to hear :(    One good thing that I got out of this appointment was some validation....... halfway through the exam after hearing he's not sure how to fix me I started crying... I felt so stupid, I didn't want to cry.......... but I just couldn't help it.  I am just SO TIRED of being in pain everyday and all I want to do is be able to go to the mall with my mom and sister, I want to be able to do some photography trips with my dad,  I want to be able to hold my baby nephew without feeling like my hips are going to give out on me, I want to be able to walk, and run, and hike like I used to without pain...... i just want to LIVE MY LIFE again......... so as I was wiping tears from my eyes Dr. Santore said "  You have a real problem here, these are real issues.... they aren't just in your head" ........... THAT is what I have been waiting to hear for YEARS........ I knew that it was not just in my head.... that my pain is real...... but after years and years of getting told that it's in your head and nobody really understanding how much pain you're in, it really does start getting to your head and start to make you feel so lost and so alone.

So that's where I am right now in this very long, painful, and tiring journey..... I will follow up with Dr. Ezzet, who is the one who referred me to Dr. Santore, as Dr. Santore said he was going to email Dr. Ezzet and have him request the CT and the MRA because he is in my medical plan so I SHOULDN'T have a problem with them approving the tests.

That's it for tonight.......... im emotionally drained, sore from being bent and moved and adjusted and tortured for 30 minutes.... and honestly just kinda out of words.  I really wanted to be able to come and write and tell you guys that everything went GREAT! .......... but it didn't........ I at least have more information than I went in with because I didn't know about the FAI........ I had suspected and was not surprised about the labral tears..... but the FAI threw me...... so I think im just still trying to take everything in and I need time to re-adjust my mindset on still having to go through more testing and appointments.   Thank you guys for all of your support!!!   I couldn't go through this without the love and support of my friends and family... and especially my Hip Chicks!!  I love you guys! xoxoxo

Monday, March 15, 2010

Tomorrow's the day.......

Tomorrow is the day i've been waiting and fighting for, for the last 3 months!!!  I will finally get to meet Dr. Santore and talk to him about my PAO's.  I am finishing my pre-appointment paperwork, and putting the finishing touches on my questions.  My mother and father are coming with me to my appointment, so that is good, I will have two extra minds to come up with questions that I forget, and two extra sets of ears to hear and remember the answers to my questions, as I know that I will probably forget some of them.  I do have alot of questions, but I also have been able to have alot of my questions answered from my Hip Sisters. I feel SOOO lucky to have met so many AMAZING people throughout this crazy process. I have been lucky enough to meet an awesome person, Alycia, who lives close to me and who has had both of her hips done by Santore, so alot of my questions regarding how Santore works or does things have been answered because I know that each surgeon does things a little differently.  Alycia has become somebody that I consider a great friend , somebody that I can talk to who understands and is able to soothe and calm me at times that i'm freaking out. I am also happy that Alycia is a creative soul like myself...... and that we are able to work together on creative ventures.  I was able to hang out with Alycia yesterday and we talked for awhile about Dr. Santore and her surgeries and how my consultation is going to go.  She has a way of easing my mind and I am so thankful for having her in my life! :)     I am so greatful for having ALL of my hip sisters in my life! I love you guys!! xoxoxo

I'll write more tomorrow and let you know how my consultation goes with Santore.  Wish me luck!! :)

Thursday, March 11, 2010

ARRRGHHHHHHHHH!!!!!!!!!!!!!!!

As if the pain is not enough today, I just got a call from Dr. Santore's office....... at first I thought maybe they were just calling to confirm and remind me of my appointment on Tuesday...... Ummm wrong!   She called to tell me that they recieved the authorization letter from Blue Cross, but she called them just to make sure it was good, and they informed her that they cancelled that authorization number on March 1st!!  WTF!!!   Seriously?!?  This is really happening??!  Ughhhhhhh!!!   Then she goes on to tell me that with my particular insurance the way they bill is that they bill my Medical Group (Scripps Clinic) instead of my Insurance Company anyway, so the authorization has to come from my Medical group and not my Insurance......... WHY IS EVERYTHING SO DIFFICULT!???     So by this point in the conversation I'm crying and flipping out because i'm so damn frustrated!!!   I tried explaining everything to her that i've been going through for the last 3 months trying to get in to see Santore....... and she asked me......... " Whats wrong with you? Do you have Dysplasia? Is that your problem?" .......... Now ok..... I understand that she was asking me that because she wasn't sure of the exact reason of why I was wanting to see Santore, and she was going to see if they had another doctor she could referr me to....... but " What's wrong with you?"  "is that your problem?" ........... was the WRONG thing to say to me at this point........ I just started crying more.......  So then I ask her how much it would be if i cam to see him without insurance..... and she said its anywhere from $250-400 ....... and I asked her if they could bill me, and she said No...... that I would have to pay cash at my appointment......... I DON'T HAVE THAT KIND OF MONEY!! ....... again, more crying......  She told me that she wouldn't cancel my appointment, and for me to try calling my Medical group and see what I can find out.......... So I called the nurse at the doctors office who was doing the referral to Dr. Santore, and who was handling putting in the authorizations....... She's been really good to me through this whole thing and really trying to help me, but she, herself can only do so much........ So i call her freaking out..... and she tells me that they are crazy, and that I DO have authorization from my Medical Group...... she checked the computer and she said that I have authorization from BOTH my Medical Group AND my Insurance Company......  and she gave me an authorization number from Scripps Clinic....... So i call the lady back at Santore's office and tell her, and she said she was going to call the other doctors office and have them fax a copy of the authorization to her to make sure its really an authorization because they have problems with Scripps Clinic and sometimes people think its an authorization when it really isn't..........  she said if she doesn't call me back then everything is ok....... and if she does, then there is a problem...... she hasn't called back yet......... I don't think i've ever wanted my phone to NOT ring so much in my life.   This is ridiculous!! ........... and just think, i'm going to have to go through the whole thing again just trying to get them to approve the surgery itself!!!   All of this is just to have a damn consultation with Dr. Santore!!! 
I am emotionally and physically exhausted!!  I'm done with today!!   Can I just start all over with tomorrow please!!   :(

Spoke to soon.......


So I thought today was going to be a good day, pain wise, because when I woke up and rolled out of bed this morning it was pretty painless..... and then as I was walking from my car to work today, which is a little bit of a walk because of stupid construction going on around our buildings, I was doing pretty good...... no limp, no waddle...... Sweet!!!  Today's gonna be a good day!!!  ....... WRONG! ........ I sit down in front of my computer, turn my light on, log in, turn my heater on, radio on....... and then... wait.... whats this? ..... ahhh yes..... there it is...... the oh so familiar BURN!   ARrrrrghhhh!!  The pain that I hate the worst!!  I would take the stiffness and the limp and waddle over the burning ache any day!!  I can't really explain how much it hurts..... it makes me naseous and grumpy and it just doesnt stop!!   Ugh, im glad today is my Friday here at work..... then I have to make it through the weekend and then I FINALLY see Dr. Santore on Tuesdsay!! Whooo hoooo!!!   

This weekend I need to sit down and fill out my pre-appointment paperwork that they sent me, as well as write down ALL my questions to bring with me so that I don't forget anything.  I'm also thinking of printing out some information about Hip Dyplasia and about the PAO surgery for my sister, and for my mom.  My sister understands the need for the surgery..... It's my mom that is having a problem with it.  I'm having a hard time explaining to her why I need it....... she just keeps saying " Maybe there is something else that can be done" ....... or " Maybe he'll say that you don't need the surgery " .......... I told her she can keep hoping that is the case, even though my report from the OS who referred me to Dr. Santore for the PAO clearly says " I have explained to her that this is a developmental process and it cannot be changed other than with surgical intervention." .......... She just doesn't want to believe it.  She's coming with me to my appointment with Dr. Santore next week, so hopefully he'll be able to explain to her WHY I need the surgery, and ease her mind a little bit about things.   I understand that she is scared....... she should be...... it's a Major surgery...... and I am terrified ...... but at the same time I am miserable right now, I can no longer do many of the things that I used to enjoy,  I am unhappy and depressed, and if this surgery gives me a chance at getting my active life back, then I'm going to take it!  I understand the potential complications that come with the surgery....... and I understand that it is not guaranteed and that ALL of my pain may not go away..... but anything has to be better than this right now.  I don't think people really understand the effect Chronic Pain has on a person.... it makes you angry, it makes you sad, and it makes you sick, and it's a hard thing to deal with day in and day out while trying to maintain a smile on your face for everybody else.

When I talk to Dr. Santore, and if he orders me the MRI with contrast, I am going to ask him if its possible to have my left ankle/foot MRI'd at the same time.  It has the same burning ache and pain that my hip does ever since the swelling started about 4 or 5 years ago...... i've had x-ray after x-ray and nobody can find anything, but I KNOW something is not right.... there has to be a reason of why it would burn and ache like that constantly.  Here is the picture of the swelling for those of you who have not seen it........ it doesnt swell like this anymore, but the ache and burn is still there.

Anyway..... thats about all I have for right now....... just have to make it through the weekend and hopefully i'll get all of my questions answered on Tuesday when I see Dr. Santore!!!  Yay!!!

xoxoxo to all my Hip Chicks!!


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 :)

Monday, March 1, 2010

FINALLY!!!!!!!! Wait........ this is really happening?? Oh Crap!!

Hi Guys!!  Ok.... so I've had a pretty eventful few days since my last post......... Let me see..... On my last post I was telling you about how I called the UM Department and had them put in a request for authorization for me, and also how I was going to be meeting up with a fellow Hip Chick to do a photoshoot for her accessory line! Yay!!  Ok....... so Let me tell you whats happened since :)

I was supposed to meet up with Alycia, my fellow Hip Chick, on Friday..... well that didn't happen..... for various reasons.... she was coming down from Temecula, which is about an hour and a half away from me I think, but it ended up that her hips were killing her that day, and honestly, so were mine.... along with a major sinus headache, so we just scrapped Fridays meet and decided to meet a few hours early at Balboa Park (where we were doing the shoot) to meet and sit and chat a little bit before the model got there.  So saturday comes and the weather is CRAPPY!!  Rain, Rain, Rain............ but we decided to still do the shoot because there were parts of Balboa Park that we could shoot in that had cover for us..... so its raining the whole way from my house all the way to Balboa Park......... once I reach Balboa.... the clouds opened up, the sun came out, and it was perfect........ like it stopped raining just for me! yaya!! haha! ........ well that didnt last long........ haha, I met up with Alycia, we hugged, talked, walked, and sat down for some tea and some more chit chat......... I LOVE Alycia!  She is the cutest girl ever and so easy to talk too!!  Not to mention, she makes AMAZING earrings and hair pieces! :)   Alycia has had both of her hips done by Dr. Santore who is my surgeon, so it was nice to be able to sit down and talk to somebody who has had the same surgeon I am going to have.  We talked for awhile, while we waited for our model to show up......... and once she did, the show was on! ......... we had such a great fun time shooting....... it was cold, it was windy, and it was raining every  now and then...... but we managed to get some really good shots if I do say so myself! :)   here are a few shots from the shoot.......... and you can check Alycia's ETSY page out and purchase all of the earrings and hair accessories on there......... she also does custom requests, so HIT HER UP!!!!  I was stuck in bed most of the day on Sunday because apparently I did a little to much walking and bending for my stupid little hips to handle!! SO enjoy these pictures!!! haha! :)

 


And then Alycia and I also had dinner on Sunday night at a cute little Mexican place in North Park. I had a great time, Thank you Alycia for getting me out of the house!!! <3


So while we were hanging out and talking hips this weekend.......... Alycia  encouraged me to go see Dr. Santore for a consultation even without my insurance, and deal with all the other crap later......... the most important thing was to just SEE Dr. Santore, and get this ball rolling!!!  SoOOO I decided that on Monday, I was going to call and make an appointment with Dr. Santore, regardless of if my authorization that the lady from the UM department had put in had gone through or not......... Well 8am rolls around on Monday morning and I make the phone call to Dr. Santore's office........ only to be told that they open at 9 ....... ha, must be nice!!  ;)   So I hang up and decide to just call the UM Department while im waiting for 9 to check on my authorization since the 3-5 days was supposed to be up on Monday anyway..... and guess what..................... IT WAS APPROVED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!!!!!!!!!!!   I was SO flippin excited!!!   9am could NOT get here any faster!!  9:01 and i'm on the phone to Dr. Santore's office........ only to be told that it's just fine and dandy that I have approval, but they can't give me an appointment until they have that approval in writing......... FINE!!!  So I hang up, and call the UM department back to see if they can fax me the approval letter so that I can call and make my appointment that I have been WAITING for, for 3 EFFING months!!!...... and what do they say ?  ..." Umm I'm sorry dear... we can't do that.... we can't send out a fax because it hasn't been 5-7 days yet since we sent out the approval letter" ....... Are you KIDDING me???  REAlly???  you're REALLY gonna be THAT dramatic about it??  PLEASE!!  get over yourself, and fax me the damn approval letter!!!!  ARGGHHH!!!   so fine... I call Dr. Santore's office back and tell her to just put me down as a cash patient so she can give me the appointment, and then when they get my approval letter they can just change me to insurance instead of cash...... Well that worked like a charm........ and I have my appointment March 16th @ 1:30pm!! WHOOO HOOOOO!!!!    SOOO happy....... but then I calm down......... and it all starts to sink in a little........ then WHOOOO HOOOOO turns to......... OH CRAP!!!  This is REALLY happening!  Let me tell you, it is such a weird feeling to be so happy about something and to be so utterly freakin scared out of my mind about it at the same time.  I go on emotional rollercoasters ALL the time......... BUT to have these two opposite feelings about something at the same exact time is indescribable.   The thought of having the chance at being pain free and having my life back is AMAZING...... but at the same time, the thought of what i'm going to have to endure to get there...... terrifies me!  BUT I know that I'm going to be ok!!  I have my friends and my family who love me......... and I have my extended Hip Chicks family who will be there for me through the whole thing. :)

Thanks for reading ya'll! ;)

Wednesday, February 24, 2010

Just Breathe.............

Thats what I had to keep telling myself yesterday!
But first let me tell you about my trip :)

I'm back from Texas Ya'll! :)  I'm glad to be back home, but missing my family back there, my cousins and my aunt and uncle, like crazy!  It was nice to be around family. Here in California, the only family I have, besides the friends I consider family, are my parents, and my sister, and my nieces and my nephew's.  For the most part I'm ok with it because really it's all I've ever known.... well, since I was 10, that's the way it's always been....... So back in Texas it's my cousins ( two of which i have never met until this trip)  and my aunts and uncles.... and then its all of my Aunts family there.... which is not technically MY family... but its family none the less. So I had a great time...... except for the hips giving me trouble..... the first night I was there.... my cousin had to get up in the morning to go to a class that she couldn't miss.... and I slept in her bed with her.... usually I guess i don't notice it as much because i'm free to toss and turn every couple of hours so that I don't spend to long on one hip, but I was sleeping with my cousin in her bed, and she had to get up early.... I didn't want to toss and turn the whole night and keep her up..... so I stayed on my left side the whole time....... and BOY did I pay for it in the morning when I woke up and for the rest of the trip........ so Note to Self :  Next time you have to sleep on one hip for an extended amount of time.... Pain killers BEFORE you go to bed to numb the pain when you wake up!  My cousin took me to my first Rodeo.......... it was great, I loved it....... every part besides the roping!!  I turned my head and did not watch the poor little guys getting roped and yanked backwards as they are trying to run away... everybody tells me that it doesn't hurt them..... Well I don't care..... it LOOKs like it hurts them, and it makes me want to cry!   Toby Keith was playing that night after the rodeo was over.... we stayed for about an hour of his concert and then took off to avoid the crowds..... At first I was upset that a couple came an sat right in front of us with their big cowboy hats on because I couldn't see anything....... until I realized that it was a great photo opportunity for me ;)



Ok ..... now back to reality....
So I get home from Texas on Sunday and was supposed to go to work on Monday.... didn't happen... I decided to bring a sinus/head cold home with me from the airport....... and nothing is worse than staring at a computer for 10 hours of the day when you have a sinus headache.... I couldn't do it.... So I called in sick... I was going to call my insurance and start dealing with all that crap again....but I just couldn't bring myself to do it.... I was not feeling good, I was tired, and I just wasn't in the mood...... I pretty much slept all day.... SO Tuesday morning.... the fun begins!!  I get to work at 6:30am, but I had to wait until 8am to start making any phone calls..... I was NOT in the mood to really deal with it, I still wasn't feeling good but I knew I had to..... I spent a whole flippin hour on the phone (luckily my boss was an hour late, and everybody else was in a meeting all morning) For that whole hour I was passed on from person to person, department to department with NO BODY knowing anything that could help me. Before I left for Texas I was talking to my Medical group and they had said that they were sending an email to the UM Department of my Insurance to get them to issue me a Denial number so that I can appeal it...... well they sent them an email on Feb 11th... and then again on the 19th... and then again on the 22nd, which was the day I was calling with no answer from them..... So I called the UM Department myself trying to figure out what was going on, and they tell me that they have no record of any emails or any request for authorization or denial or anything..... .and then decide to pass me on to the Appeals department.... I DON'T WANT TO TALK TO THEM!! They already made me wait a whole freakin 30 days without telling me that i needed a denial number to begin with!!! WHAT part of that are they not understanding??!   So i hang up and call my Medical group back and get the name of the person they are supposidly emailing over at the UM Department ( Angie) ...... so I call back the UM Department and ask for Angie and this girl doesn't know who I'm talking about...... " ummm... there is no angie here... "..... UGHHHHHH!!!!!!!!!!!!!  Just breathe Krystal.... just breathe!!   So anyway, this lady was nice enough to ask me if I just wanted her to send in a request for me to see an Out of Network doctor.......... WHAT?  really??  Thats all I had to do?? I'm SOOO flipping confused!   She said it will take 3-5 business days to get an answer and if they deny me, then i can use that to appeal.......  This is all so ridiculous, really...... I had a freakin break down yesterday.... I hung up the phone and cried...... I'm so frustrated, and not feeling good, and I was at work trying to deal with this all..... it was NOT a good day! 

So thats where I'm at..... HOPING to hear something by Friday or maybe Monday of next week.  I'm stressing out wondering what I'm going to do if they don't approve me...... there is NO way that I can pay for it without insurance.... there is no way I can even pay for it if they make me pay Out-of Network fees...... on top of all the stuff I have to buy for recovery, my walker, my cane, my crutches, my shower seat, my toilet riser thingy.... and much more.... this is all stupid, just stupid and I hate dealing with it....But at the same time I hate dealing with the pain that I am in......... which makes having the surgery and dealing with all this crap worth it............. in the long run.... its just the short run that's killing me!!  I know i'll get there..... i'm just having a hard time holding on right now and keeping it together. ........... Which brings me to why im looking forward to this weekend......... a new friend of mine........ a fellow Hippie....... lives in Temecula... and she makes beautiful earrings and hair pieces and sells them on ETSY ...... So her and I are getting together this weekend and doing a little photoshoot with some models to showcase her product :)   I will post pictures later of course. :)
So that' it.... thats all I have for ya....... thanks for listening!!


Wednesday, February 17, 2010

Good News/Bad News

Ok..... Good news....... The burning achey feeling is gone (for now) ..... Yay!!  The bad news....... MY FLIPPIN INSURANCE SUCKS!!!!!!!!   Arrgg!  I'm so frustrated!!   So I FINALLY understand whats going on with my insurance and my authorization/denial.  I was wrong in my last post about them re-opening my request and hopefully getting it approved...... I didn't understand what was going on, but I talked to somebody today at my Medical Group and now I understand.  My Insurance (Blue Cross HMO) is the one who screwed up!!  Last month when they first put in for the authorization, my insurance company sent them back a notice stating that the Surgeon is Out of Network....... and from what I'm told with Blue Cross HMO when its out of network its automatically a denial..... So thats why my doctors office told me that I had been denied..... My insurance should have issued at Denial Number to my request so that I could appeal it...... they NEVER did that......  which I wasn't aware of..... so that is why when I went to appeal my denial, my insurance had no record of it ever being denied...... So when my Medical Group re-opened my request, it wasn't to hopefully get approval (they already know they arn't getting it) ..... it was to have my Insurance company give them a Denial number so that I can appeal it..........  FML!!!!!!!!!   Seriously???  I have to wait for them to deny it (AGAIN) just so that I can appeal it (AGAIN) and wait ANOTHER 30 days????  You have got to be kidding me!!!   I am so EFFIN pissed!!!   When I do get my denial number and I call for my appeal..... I am going to make sure I talk to somebody and make sure THEY know that THEY messed up, and that I shouldn't have to wait the whole 30 days for the appeals process AGAIN.   This is ridiculous!  I'm going to raise hell and they better put my appeal through as an expedited appeal so that I can get my answer in 3 days.   ugghh!!

On another note........ I have one more hour of work, and then I am leaving to go visit some family in Texas until Sunday.  Yay!! At least that will take my mind off of my stupid Insurance issues for awhile.  I am in SO need of a vacation! See ya guys when I get back!

Tuesday, February 16, 2010

Burning stabbing pain!!

Burning, Aching pain...... I can't stand it!!  Today is not a good day for me and my hips :(   I'm just feeling generally like crap today.  The burning achey pain started this morning just in the front groin area of my hips... spread to the side and is now made its way around to my lower back.  This pain is the most annoying of all.... I get SOOO frustrated because no matter how I adjust my hips, or how much i try and stretch (I don't know why i think thats gonna help, never does) ...... it just doesnt stop, its constant, and it makes me feel naseous!  I feel like a big baby because all I wanna do right now is curl up in a little ball and cry ..... cry because it hurts, cry because im so frustrated that I cant make it stop, and cry because I'm the only person who can FEEL it...... you cant see it, so to anybody else listening to me tell them my hips ache and burn so much to where i wanna cry, I feel like they just think I'm being a big baby!  Granted...... I'm sure not everybody is thinking that...... maybe its just me that is projecting my thoughts of myself onto other people......  I'm angry.  I'm angry that I can't just handle the pain.... I'm angry that it effects my life so much, and i'm angry that I'm angry!!   Ughhh!!!  Just make it stoppppp!!!!!  :(

Saturday, February 13, 2010

Insurance Update

Hey guys......  Ok, well I am still in the dark with the insurance company. The 30 days that the insurance had to give me an answer on my appeal was up yesterday, the 12th.  I called them on Thursday and was told " It says here in the notes that they are closing the appeal today because there was no denial from the Medical group in the first place"   Wait........ WHAT???   What do you mean there was no denial!?  I was told by my doctors office that my authorization was denied because Dr. Santore is not a participating provider in my insurance plan.... so that was why I sent in the appeal with the letter of medical necessity from my doctor.
I'm flipping out by now....... are you kidding me??  I've been waiting for a freakin MONTH for you to tell me that there was no denial in the first place?  I called my doctors office back and talked to the nurse in charge of sending in for the authorizations....... she told me that the insurance company had called her the other day to find out the reason that I needed to see Dr. Santore ( although, they already had the stupid doctors report that states WHY) ....... All this insurance crap is so confusing!! and FRUSTRATING!   I'm not exactly sure what happened, but basically where I am right now is right back at the beginning........ im not authorized, but i'm not denied either...... they re-opened my authorization for Dr. Santore........ my nurse said this could be a good thing, because my medical group is the one who re-opened my authorization after speaking with my insurance company....... so I'm hoping that they reopened it because they are going to give me the approval.  I honestly don't understand why its so complicated!! It's not like im asking them to cover anything cosmetic, I NEED this surgery to be able hopefully live a pain free life....... or a semi-pain free life. 

I am SOO glad that I am going to be going to Texas to visit my cousin next week, that will at least keep me busy for a week without having to think about all this other stuff hopefully....... and in the meantime before I leave, I'm going to pull out my camera and mess around with some shots this weekend.  Tomorrow I have a photoshoot with my friend Nicole,  I can't wait to edit those pictures! :) 

To my hip chicks, Ashely and Kristen, I'm thinking about you guys, I'm so glad you made it through without any complications and now you can concentrate on recovery!! yay!!   Marianna....... You're going to do GREAT on Monday..... and Serena and Sarah and Becky..... it's almost recovery time for you guys too!!  You'll all be on the "other" side soon....... and we'll be cheering you on from the sidelines!  I love you guys!!

Wednesday, February 10, 2010

You might be Dysplastic if.....

haha!! I took this off of another Hip Sisters blog, and thought all you hippies would find it funny... but so very true!  Enjoy!


You might be dysplastic if ...


1. You are under 30 and own a walker, a raised toilet seat and a hip kit.

2. You have said, "it's not a hip replacement, they are breaking my pelvis" more than once in the same day.

3. You are adept at doing the "fist in hand" demonstration of a what a normal hip looks like, followed by what YOURS looks like, followed by how the surgeon will correct it.

4. While carving a turkey, you take the opportunity to demonstrate for your guests how periacetabular osteotomy works using the carving knife, said turkey, and a few screws from the junk drawer in the kitchen. You end up ordering pizza.

5. You are the youngest person in your aquatherapy class.

6. You are the oldest patient at the children's hospital.

7. Before going on any outing you ask, "how far will I have to walk?"

8. You can spell "iliopsoas" and "trochanter."

9. Eskimos have hundreds of words for snow. You have hundreds of words for hip pain: snapping, grinding, tin foil, popping, giving way, ripping, tearing, shredding, burning ...

10. Even though you got a "C" in high school biology, you can name and describe the function of every muscle, tendon and bone between your belly button and your knee cap.

11. You practice sleeping on your back so that you'll be ready for the weeks post surgery.

12. You are a woman but you say the word "groin" a lot.

13. You have posted a picture of yourself in a hospital gown on the internet.

14. You have posted pictures of your incision, your x-rays, your hardware, or your surgeon on the internet.

15. You've refinanced your house and/or cashed out your retirement accounts just in case you have to pay for a surgery which your insurance company may, at the last minute, deem "not medically necessary."

16. You have a blog which you update hourly (first week post diagnosis), obsessively (in the months leading up to surgery), daily (the week before surgery), daily with help from a family member or nurse (from the time the epidural comes out until you leave the hospital), bi-weekly (from the time you leave the hospital until you get to throw the damn crutches away), then twice monthly until such time as you just want to get on with your life again. You then update the blog one year after surgery with a picture of your healed incision. Unless ... you need surgery on the other side; if so, repeat.

Mixed Emotions

I'm not usually at a loss for words when I sit down to type..... my fingers just usually start typing and everything spills out of my head onto the page.... sometimes in random order, so i apologize for any future confusion that might occur...... but for some reason when I sat down to write this blog, I found myself just sitting here staring at the computer for a few minutes...... I think it's just because I have such a mix of emotions floating around in my head/body/heart right now that i'm not sure how to express it all. Ever since I was officially diagnosed and made aware of the surgery (PAO)  that I would need to have in order to correct my dysplastic hips, I have been on a roller coaster of emotions..... even more so than I usually am.  I was able to find a few "Hip Sisters"  who have been through what I am going through right now, they turned me towards this amazing yahoo group called Hipwomen, I found it comforting to read everybody's posts, their updates on recovery status, questions from the "newbies", and more importantly the VENTING, it made me realize that is OK to be angry, It's ok to self wallow every now and then, it's ok to feel lost and alone.... BUT it also made me realize that although this is going to be a LONG process of healing and recovery, that I'm NOT alone, no matter how much I might feel that I am at times. I loved all of the support and positive engery that is found on the yahoo group, but I wanted a little more interaction with my "hip sisters" ...... so I created Hip Chicks..... its a facebook of sorts, just for us Hip Chicks ;)   I have found AMAZING friends, and an even more amazing support team that I know I am going to need to get me though this.  So to all my hip chicks..... I love you guys, and I am SO thankful for your support!!!  xoxoxo

I've been doing alot of reading of blogs from people who have gone through or are going through what I am right now,  I found a great one yesterday from somebody that has had a PAO through the surgeon I will be going to, Dr. Santore.  I have heard so many good things about him already and this blog just helped reinforce what good hands I will be in.  I also found a new hip sister on Hip Chicks last night that actually lives by me.... yes.... RIGHT BY ME!  Yay!!!  She's actually having surgery by Dr. Santore on Monday, the 15th,  so Marianna if you're reading this, you are in my thoughts, and I know you're going to be fine, You'll be on the "other side" soon! :)

I guess the reason why I am such a mix of emotions right now is because of where I am in this whole process... i'm in the pre-waiting stage...... no, not the waiting for surgery stage.... but they waiting to see if I can even have surgery..... My stupid insurance denied my authorization to see Dr. Santore because he is not on my health plan...... I sent in an appeal with a letter of medical necessity stating that there is no surgeon in my health plan that is qualified to do such a procedure because of how specialized it is.  They have until this Friday, the 12th, to give me an answer on my appeal.  So this whole time while i've been in the pre-waiting stage, i've been trying to mentally prepare myself for what i am going to have to go through, I've been trying to figure out how to re-arrange my life in order for this to happen, since it's such a major surgery, it will have a major impact on my way of life for awhile...... I've been trying to lose the weight I need to lose, i've been trying to get stronger physically because I know the stronger going in, means the stronger coming out...... But it just hit me....... WHAT IF....... what if my insurance doesn't even approve me?  What then? I don't have the money to pay for it myself, I don't even have the money to pay to see somebody out of network....... and then there is... ok, what if my insurance approves me..... but Dr. Santore doesn't?  I mean every blog i've been reading who has been able to have this surgery has had Mild to Moderate Dysplasia...... I only have Mild Dysplasia..... what if he thinks its "too mild"  to do the surgery?  Trust me... it doesnt FEEL mild.... the pain is there and it continues to get worse...... I'm just afraid of getting my hopes up of being able to have the surgery and a chance at a somewhat pain free life..... only to be told that I'm not a candiate for the surgery.   I think I'll feel better once I'm able to see Dr. Santore and actually be told that I can have the surgery..... until then, my thoughts will continue to entertain the "what if's"   Ugh!!!!

Saturday, February 6, 2010

Workin on my Fitness

I am gonna try and make this short because my hips are screaming at me right now, especially the left.... but when i start typing sometimes I just cant stop.... so hang in there....
I still don't have an answer from my insurance company besides the usual " We have 30 days to respond, your appeal doesn't close until the 12th of this month" ...... and you can bet your bottom that I'm going to be calling first thing on the 12th..... I'm just so sick of waiting!!  I say that now, but I know the moment I have a date set, time is going to fly by and i'm gonna be stressing about getting everything done beforehand.... but until then.... i'll continue to complain that it's taking FOREVER and I can't wait to just be able to talk to the surgeon.

So anyway, last week I ordered a weight workout called KettleWorx, it was recommened to me by a friend of mine on Facebook. Instead of barbells its a program using a Kettlebell. I am extremely excited about it!!  I know that the stronger I am before going into surgery, the easier it will be during recovery..... at least thats what i've been told..... so i'm excited to start workin on  gettin me some muscles! haha!  :)    I received confirmation that my workout was shipped last week, but it won't be here until the 10th...... Really?  the 10th?  I have to wait 4 more days??   Didn't anybody tell them how impatient I am???  And it's not even fair that they didn't give me an option to pick for shipping..... otherwise I would have paid more to have it shipped here faster.... sooooooo being that I didn't want to wait until Wednesday,  I went out to Target today and bought a Kettlebell there... it came with a DVD workout... it's not the best workout.... but it will do until Wednesday  :)   I'm so excited about it that I actually took pictures of it to show off my new kettlebell....... ok, well actually, I have just been feeling like i've been neglecting my camera and my new lens, so I spent some quality time with my camera today :)    i'll post the pictures below, so that you can ohhhh and awww over my new kettlebell :)

Thats all I have for you folks.... I helped my sister out  today and  helped watch the little ones while she ran out to get a few things.... Domanic really wanted to be held.... and no.. not held while I was sitting down.... he wanted me to stand up, walk around, and hold him until he fell asleep.... man, did that upset my hips.... I didn't realize how bad my hips were getting until tonight.... especially my left... im finding alot of the little things like hold my nephew that never used to bother my hips, or  at least not bother them as much, are really effecting me..... So I think it's off to bed for me.... I have a date with some ibuprofen and a heating pad. 
Night!!  <3

My ticket to strong muscles!!
P.S. Don't laugh...... I know it's only 10lbs.... but i'm a weakling right now... I'll get better  ;)

Wednesday, January 27, 2010

Patience is NOT one of my virtues

So I've always known that patience is not one of my strong points... I want what I want, when I want it...... now I know that is not realistic, and something I need to get over/work on..... maybe if I learned to relax and let go of a few things that I have no control over I wouldn't have so many stomach problems with ulcers and anxiety and whatnot..... but eh... I'll work on it ;) SOOO in the meantime... while I'm waiting for my appeal to go through with my insurance company, I've been calling every day to check on it, and they tell me every day that it WILL take the full 30 days... which would be Feb 12th..... maybe i'll give them a little bit of a rest and not call again until next week ;)

So since I have no new's for you guys on that front..... I just want to talk about Hip Chicks for a quick minute... I touched briefly on it in my last post I believe... but I am really happy and proud of the way its going. I started Hip Chicks about a week and a half ago and we already have over 100 members. I created Hip Chicks because I've realized how helpful and mind easing it can be to talk to somebody going through the same thing as you are...... I've talked to a few people about it outside of my "Chicks"...... and as much as they try to sympathize and be supportive, and as much as I appreciate it.... It's just not the same as being able to talk to, and vent to somebody who actually FEELs your pain.... I've noticed that Hip Dysplasia really has an effect on my body of course, and on me mentally.... I have a pretty high pain tolerance... hense all my tattoos ;) ..... BUT Chronic pain... pain you have to deal with every day of your life is another story... Just because I have good days, and just because i'm smiling... and Just because you can't SEE anything "wrong" with me...... doesn't mean that I am not in pain... it just means that I've been dealing with it for so long that you have to learn to build up somewhat of a tolerance for it.... but sometimes you just can't deal with it and you have to let go and cry or get angry, or feel sorry for yourself.... but then you pick yourself back up, and carry on with your life as best as you can..... thats what being a "Hip Chick" means to me..... I created Hip Chicks as a place for everybody who goes through what I go through or more on a daily basis can get together and talk... to vent, to get advise, to feel "at home" ...... honestly I didn't expect such a big outcome, but we have over 100 members now and it keeps growing..... reading the posts and watching everybody interact, and seeing the amount of support everybody is able to receive makes my heart so happy..... happier than I could have imagined.... One of my chicks wrote... " I have felt a bit lost in a cloud till this morning when I found this group and instantly felt solidarity. It really helps" ..... and another said " HI hippies, I just found this awesome site where I know I can finally feel at home." ....... It's when I read things like that is when I feel like crying..... not sad tears, but happy tears.... You have no idea how important it is to be able to express your fears, and your anger, and your frustrations to people who understand.... it makes you feel not so alone. I am so happy that Hip Chicks is a place for people to be able to do that and to get the support they need and to make a few new friendships :) To all my Hip Chicks coming up on their surgeries, keep smiling... stay strong.... you'll be on the "other side" soon..... and to all my chicks recovering... keep up the GREAT work!! I am so proud of you all and thanks for being my inspiration. I love you guys!! xoxo

Monday, January 18, 2010

It Isn't easy being a Hip Chick....

BUT having my other Hip Chicks support makes it easier!! :)
I don't even know where to begin . . . So much has happened to me medically in the last 3-4 years. So I guess I'll just start from the beginning..... but I must warn you.... I type as how I would talk...... and when I talk, I tend to ramble.... soooo..... I'll try and stay in order ;)

So for as long as I can remember I have had issues with my hips/legs ...... but only off and on, and only when I walked around for hours at a time.... I remember going to Florida with my family for my nieces cheer competition years ago..... but the sad thing is..... that I don't remember much of the competition and much or our stay there besides the day that we went to an amusement park there and by the end of the day I was limping and crying in pain ...... Fast forward a year and I'm having problems with my right knee ..... off to physical therapy I go.... Lots of physical therapy and shock therapy to my knee ( something in my knee wasn't working ) and I'm all better.... for awhile that is........ The one thing I remember from therapy was my therapist asking me if I had been put in braces when I was little...... huh?? wait....what? WHY would I have been? Should I have been?? Apparently he thought my legs were a little crooked ....... I had no idea what Dysplasia was at the time....... so in one ear and out the other that tid bit of information went.......... Fast forward another year and there I am joining a Boxing Club ..... oh yes... boxing ...... It's an AMAZING stress relief.... and apparently I stress a lot according to the stomach ulcer I had when I was 12. My friend Roena and I were there EVERY day after work... taking about two classes a day.... we were pretty hard core about it ..... Monday - Friday...... after awhile we started doing some running ...... I have always LOVED running..... but I was never very good at it... never very fast and my legs have always been so weak.... but still.... I loved it... and I was determined to keep working at it....... and then one day...... as we were upstairs stretching and getting ready to go on our run...... my friend looked down and informed me that my ankles were hanging over my shoes...... my what was what??? Yeah... my ankles and all the way up to my calves were so swollen that it was hanging over my shoes....... What the heck was going on?? It didn't hurt, I hadn't fallen and hurt anything, I couldn't understand why I was swollen........ but I decided that it was probably just best to skip the run and the workout and go home and put my feet up for the night....
my legs were still swollen a week later..... so I went to the doctors.... at the time I had Kaiser...... and the "diagnosis" that I got was that I sprained my ankle...... " But they don't hurt" .... " Well it's just a sprain... the swelling will go down soon " ...... "WHAT?? are you kidding me?? I sprained BOTH of my ankles and I didn't know it? Really? I either fell or twisted BOTH of my ankles without knowing and without it hurting?" ........ yeah ok .... that was the FIRST of many useless "diagnoses" that I have gotten within these last few years........ Nobody could tell me what the swelling was from ...... they checked my heart, they checked my veins, they ran every test imaginable on my blood and nothing..... so i figured I would just deal with it.... it didn't hurt so I was ok....... the swelling went on for a year.... they would stay swollen for months at a time with maybe a week in between of being "normal" ........ and then one day... poof........ the swelling was gone...... never to return again...... SWEET! BUT as soon as the swelling disappeared........ then came the pain...... At this time I had switched my medical coverage to Sharp...... so back to the doctor I go....... xray after xray .... blood test after blood test.... nothing... so off to an Orthopedic Surgeon I go........ "nothing is wrong with you" .... so back to Boxing I go....... more pain.... so off to the Rheumatologist I go........ more xrays, a bone scan, more tests... blah blah blah....... they can't find anything "wrong" ........BUT my blood work did come back as Suggestive of Crohns Disease....... so off to the Gastroenterologist I go..... a Colonoscopy, Endoscopy, and Capsule endoscopy later....... "nothing" so they throw me in the "IBS" pool....... so back to the Rheumatologist I go...... still "nothing" .... so i get thrown in the "Fibromyalgia" pool ......... NOT buying it..... but completely frustrated with all the doctors and tests and CRAP that I decided to stop trying...... I have a relatively high pain tolerance so I can just deal with it right? Just learn to live with it....... WRONG! just dealing with it made me depressed..... being in pain every single day of your life gets old...... and frustrating..... and when NOBODY really understands and NONE of the doctors can find out why you are in pain, it starts getting to your head........ you start thinking that maybe it's all in your head...... maybe you're just being a baby.... Months and months go by with me sinking further and further into my depression ........ so much to the point that I am currently on Depression/Anxiety medication....... which helps... but the pain is still there........ The pain finally got to be to much for me, that back to the doctors I went about three months ago....... and I FINALLY found somebody who can tell me whats "wrong" with me.......... I have mild bilateral acetabular hip dysplasia ...... basically my hip sockets are shallow...... the acetabulum doesn't cover the femoral head sufficiently... which makes the hip unstable..... without surgical intervention, over the years, as the femoral head and acetabulum move without correct alignment, the cartilage in the joint wears down prematurely and unevenly. The result is differing degrees of osteoarthritis, depending on the severity of the misalignment. The osteoarthritis can occur on the joint head or in the socket itself, and eventually the need for a Total Hip Replacement........ There is a relatively new procedure called a PAO.......What is a PAO? Periacetabular Osteotomy. The mother of all hip surgeries. A procedure that cuts the hip socket out of the pelvis to allow the the socket to be repositioned and then screwed back into place. This allows the ball & socket to move fluidly, preventing cartilage damage and preserving the joint in patients with faulty hips. The PAO preserves & enhances the patient's own hip, not replacing it with artificial parts like a hip replacement. Why not a hip replacement? Although the recovery is said to be easier with a hip replacement, they are not ideal for younger people as they need to be revised frequently, leading to a possible 7+ additional surgeries for someone my age. Also, active people generally can not resume their higher level of activity............... Fortunately for me, one of the well known PAO Surgeons is in San Diego....... unfortunately he is not on my medical plan...... SOOOOO I was of course denied authorization to see him....... I am currently going through an appeals process with them and I should know the results within 30 days..... SO in the meantime...... here I am...... just pluggin along...... I have created a Network/Support group called Hip Chicks........ and that is keeping me busy.... I have met a lot of new friends and have gotten some great support..... while also being able to help other people connect and support each other, and its a great feeling!!!

So there you have it....... that's my story..... and im stickin to it..... haha, just kidding........ but really.... there you have it........ I will keep updating here as more things happen..... as soon as I get the results from my appeal, you guys will know :) Send your good thoughts and well wishes my way because I need them .... Talk to you guys soon ;)