Tag Archives: nervousness

Infection Rears its Ugly Head

Posted by emi2hips in Hip Journey and tagged with , , , , ,

Infection: Invasion by and multiplication of pathogenic microorganisms in a bodily part or tissue, which may produce subsequent tissue injury and progress to overt disease through a variety of cellular or toxic mechanisms.

 

Translation: an absolute pain in the ass pathogen to get rid of.

Today I am spending my day at the hospital since I have appointments with the infectious disease doctor that worked with me during my hospitalization as well as with my orthopaedic surgeon. They are not so conveniently spread apart. I have completed the appointment with infectious disease which took much longer than I thought it would. Then I had plans to write my blog post later tonight but this morning got me so worked up about infections that I decided to write now and leave a little cliff hanger until after tonight at the end.

I drove in the morning rush hour traffic which is why I had morning appointments; a drive that should take just under and hour takes 2 hours and is slow the whole way through. I had woken up late, after an awful night with the hips, rushed to pull myself together for the day, and thankfully made it to the hospital it time for a 9 am appointment with the infectious disease (ID) doctor. I don’t mind meeting with this doctor (unlike several others that I work with) as he has a good bedside manner, and really seems to approach everything in a logical and systematic way. We talked about how the few weeks have gone since I was hospitalized and since the screws have been removed. I have had three events where I woke up shaking and cold, and my hips were swollen, none of my muscles wanted to move and my left had a reddish tint to it. None of the events were even half as bad as the original event that occurred on the first of September, but they should not be occurring at all. The fact that it has sprung up three times even at a low grade is not a good sign and indicative of a remaining infection that my body keeps fighting off. The ID doctor said that my young age is truly acting in my favor for all this allowing me to fight off each wave no matter how weak or strong.

Upon exam, both of my hips are swollen, and the ID doctor does not like this. There could be several causes that will be better determined when the blood labs from today come back. It could just be my very aggravated hips at the moment. However the difference in feel from the bottom of my thigh to the top near my hip is enough swelling to cause worry on both hips. I have been put on a suppressive dose of antibiotics for a period of time and we will see what effect this has. The hope is that we can get rid of whatever is causing this. There was never an exact cause named, but the ID doc said it was difficult because I had already been started on IV antibiotics. Had I not been started we may have been able to nab a cause. Who knows, its in the past now.

With all these factors he ordered blood labs, and said that he would like to talk to my ortho surgeon before this upcoming surgery. Depending on how those labs come back this surgery may not be safe at this point in time especially because there is hardware involved. This to me is some of the worst news that I could ask for. I understand that at this point in time I have no control over how this is going to play out but that does not lessen the worry. My stomach is in knots and will be in knots until my conversation with my orthopaedic surgeon occurs this afternoon. Leave it to me to have things like this spring up.

If all goes well today… which really right now its 50/50 and could go either way, then surgery will be occurring on my right hip one week from today on October 8th. Just one week! Its pretty hard to believe. I am not sure if I can handle another postponement. In all honestly it would be the last of many last straws; if that’s even possible. Well until later today… I’ve got to get back to the hospital…

To be Continued Later…

Happy 1 Year L Hip…

Posted by emi2hips in Hip Journey and tagged with , , , , , ,

A reminder….You can see the big fragment of bone and the new line of the posterior wall… just need the bone to heal… then walking here we come! As long as the right cooperates…

One year ago just around this time I was in the midst of the hospital waiting room process more nervous than I had ever been, waiting for my left anteverted PAO. It held a new hope for me as I sat there with two hips screaming, the left the worst of the two at the time. That surgery held a promise that maybe I would finally be able to bear weight onto my left hip without feeling like it was slopping around in the joint and without the pain that accompanied every single step. One year ago I could not have told you what a stormy path that left hip was going to take and that despite all the issues that it has caused me that I would be just two and a half weeks away from going through the same major reconstructive procedure on my right hip.

At this point of one year, I still am working on getting my left to be full weight bearing for more than 15 seconds, and I still can not move my foot; the nerve issues persist and we are still working with others to get to the bottom of what is occurring. I am still on crutches, though at this point in time supporting both the left and right hip neither of which have the ability to take on my full body weight alone. The screws that had been placed in my left hip, one year ago today, have all been taken out, all four of them just a week ago. They were not expected to be taken out at this time but an infection to my left hip decided that they would be removed earlier than preferred.

Looking back, the struggles this past year has taught me a lot about what can go wrong, the virtue of patience and letting go, as well as a wealth of medical knowledge not to mention patient care lessons. I have been put through the gamut of medical tests for ortho, and neuro and what ever could go wrong… did. However, I am still here, trying to smile and attempting to see the glass as half full. I have been through nerve injury, car crashes, infections and additional surgeries to the left hip and in the mean time the right has been going downhill fast, to the point where there is cause for much worry if we push surgery on that side off any sooner.

At this time last year I was finally in the SICU attempting to recover, but not faring so well. About 24 hours from now there would be fear of reoperation and I wouldn’t be able to move my foot and this journey would loose most of its hope and turn into nerves and fear. We made it through though, my surgeon and I, we made it through and now going into this next surgery are using everything we learned and trying to work it to our advantage. I have certainly come a long way from those days in the ICU, although sometimes I may not feel like I’ve improved much I must remember where I started from. We will be using neuro monitoring in my upcoming surgery and should there be any question that we need to re-operate and maneuver the  fragment, there will be little debate.

Today I had pre- ops for my surgery on October 8th(despite the fact that I was just hospitalized for 10 days….

I marked the top and bottom of the incision from my anteverted PAO which was now almost a year ago, and then I marked off where they cut into me now. My surgeon took out much of the scar tissue there, and we had debated doing that to the whole scar but given the circumstances we decided that we needed to just address the most urgent matters at that point in time.

Meaning they were quite pointless), but it was a bit ironic that they were on the day of the 1 year anniversary of my anteverted PAO. What’s the big deal about this? I mean its just one year post a surgery right? Wrong. That surgery put screws in me and completely altered the left side of my pelvis and has resulted in problems and complications for the past year. My left hip though… surprisingly… is better and the surgery has actually accomplished what we wanted it to- a better, functional, relatively pain free left hip joint. To make it one year from that surgery and then to look at that xray with no screws (as of last week) was actually quite amazing. My pelvis is a very different shape now on the left side and seeing my pelvis without the screws just makes a lot of sense. I could see how it all healed together and how different it looks from the shape that it was before. Once I have this one, I’ll show it to you compared to the screws post surgery. Its pretty impressive the changes that have taken place. My incision looks like it did in my post the other day with the steristrips covering the part that my surgeon opened last week. Nothing special. Just incase you missed the lovely picture I put it in again…

So here I am screwless, and waiting to see how the left one turns out. several lessons learned and many more I am sure to go. Its been one heck of a year with that left hip and it is still not quite to a point where we can call it a total success but its getting there with a lot of work and a little TLC. Happy 1 year to my left hip… and may the right hip experience far fewer difficulties than you have.

Days till Surgery: 18 days

Surgery Date: October 8th

Goodbye Screws!!

Posted by emi2hips in Hip Journey and tagged with , , , , , , , ,

The final decision that my surgeon and I made this past week regarding the interesting situation that I was in, was to go in for surgery, take out the screws, get a few tissue samples to culture for infection, and remove some of the scar tissue that had formed. I was told that this would be about an hour and a half long and that it would be easier on me than any of my other surgeries. It would be considerably shorter than any of the other 5 surgeries that I have been through on my hips. Here’s how my goodbye to the screws in my left hip played out…

At one point one of my nurses brought me my pain meds in one cup and in another hershey kisses! I think we all know that chocolate is the most important med of all ;)

Its Wednesday morning and I had been NPO since midnight, however despite this I was  not hungry at all. All morning I couldn’t think of much other than what today was going to bring and also what it marked- the start of my surgery and recovery filled fall and winter. For me the surgery today was just the beginning of the jurney to the reconstruction of my right hip, since really the October 8th date would be leaning on how todays left hip surgery went. I stared out the window just listening to my music (the new Dave Matthews album) and trying to remove myself from the events of the day. A few of my favorite nurses came by to say good morning and wish me luck that day. I am extremely lucky to have the support of such amazing nurses who have cared for me time and time again with each incident that I end up in the hospital. In a way it makes the experience of being in the hospital easier because there are familiar faces who remember you and reach out to help.

The view out my window, staring at another portion of the building, didn’t change all morning no matter how hard I stared at it. My nurse, who I have had in the past and who I was very happy to see that day, came by with a nursing student around mid morning to go through my pre ops. “Emily is a pro at this,” the nurse told the student, “she is a great person to learn how to go through all this with,” And with that we went through the piles of paper that had to be filled out before I was brought down to the OR. This was my first time being brought down from a hospital room as usually I was an admission that arrived at the hospital the morning of the procedure. In a way leaving from a hospital room was easier because you skipped about five different steps in the process where you would usually be waiting. Im not sure though if its good to be known as a “pro” at surgery by the nurses…

Eventually around about 10:30, one of the OR techs came up and explained that he would be wheeling me down to

Up until 24 hours post op I was on antibiotics because of my infection, and then I would be put back on antibiotics in addition to IV fluids after surgery was over.

the pre- op holding area. This was real, it was happening and there was no going back. My surgeon and I knew that if we did not get this done we would be debating for the next three weeks until my next surgery if it would be safer to get the screws out first. As I was wheeled downstairs I just kept repeating to myself that this would be an hour and a half, the shortest surgery that I had been through and that it was going to be ok. I really had no time to have any emotions towards it because it happened so fast.  My surgeon came over, talked me through a few things, had me sign the surgical consent, and then wrote a big old “YES” on my left leg. From there he said he would see me in the OR just before they put me out and then he would see me after, once all was said and done.  Anesthesiology came over and had me sign the consent for that. The anesthetist was one that I have had for several surgeries, he is very tall and soft spoken but friendly enough.

The IV was hooked up, vitals were being taken constantly, and I was ready to go. By 11:30 the resident that would be in the OR and the scrub nurse had come to get me and I was wheeled through pre ops to the OR where everything was already becoming a blur because of the sedative they had given me. My surgeon was there and the anesthesiologist placed a mask over my nose and mouth through which I would breath 100% oxygen before they “put me to sleep.” This is the last thing that I remember. Before I knew it I was waking up tears streaming down my face, an oxygen mask over my nose and mouth and pain radiating from my hip. I was shaking and was not quite aware of where I was at the time. The nurse kept telling me to breathe, that it would help my pain and all I could reply in a broken sentence was that I was trying. I know she said, just keep trying and she stood there holding my hand tight. I was most grateful when my surgeon came over,

I marked the top and bottom of the incision from my anteverted PAO which was now almost a year ago, and then I marked off where they cut into me now. My surgeon took out much of the scar tissue there, and we had debated doing that to the whole scar but given the circumstances we decided that we needed to just address the most urgent matters at that point in time.

the most familiar face, and he was there for a bit with me. He told me that all had gone well and that he would tell me more about it once I was more with it and back up in my room.

I am not sure what time I ended up back upstairs, but at some point I was moved back up to room 3 on 7C and recovering. The pain was still stabbing through my hip but there was nothing that I could do. I knew that it was just post surgical pain and that once that went away I should actually be feeling better than when I went in. I was exhausted and just plain out worn down from the days events. I would remain in the hospital until Friday evening when I was discharged.

Thus, now here I am and today marks the 3 week point to my next surgery, which is planned, the reverse/ anteverted PAO on my right hip. Up to this point in time I have been through 6 hip surgeries… this will be number 7… and unfortunately is a very difficult one. This upcoming surgery is the equivalent of what I went through last fall and I can easily say that it is definitely the hardest struggle that I have had and I have more against me going into this one than I did last fall. I am working hard to keep myself together both mentally and physically, though  my right hip is falling apart fast. It is very uncomfortable and is making getting around considerably difficult. For the time being I can not shower due to the wound on my left hip so I have help washing my hair over the sink and I wash up every day “sponge bath” style. Not exactly the fastest or easiest way but its my only choice. I am emotionally exhausted and physically just completely worn out.

For the next three weeks I need to do my best to keep seeing the glass as half full, and to keep myself as calm and collected as possible so that I enter this surgery in the best mindset I possibly can. I have a surgeon that thankfully is going above and beyond to help me get to that point in time. I went through 4 IVs and plenty of IV fluids and antibiotics to try to treat the infection that was going through me. The number of tests they put me through was more than anyone wants to go through in a lifetime let alone a week and a half but I didn’t really have a choice since we wanted to figure it out. The 10 days that I just spent in the hospital and the unplanned surgery were completely unexpected and threw me for a loop, however I made it through, I am doing the best that I know how and that is all that anyone (including myself) can ask for for the next three weeks.

It is so strange to think that these screws, these 4 things that have held the left side of my pelvis together since last fall are now out and no longer a part of me. Once the swelling in my hip is down I wont be able to feel a screw head anymore but rather just bone. My surgeon said that when he was in there they were severely irritated as well as causing issues in the muscle that surrounded them. I was unable to wear jeans cause they fell on top of my screws and bothered me too much, and I was constantly irritated by the seatbelt in the car. Laying on my stomach was bothersome and even just leaning against a counter was a painful reminder that I had hardware in me. Now its gone. I am screw free (well for three weeks) until the right one gets them. These things had been such a part of me and now, well now they are gone and my left hip is all my own bone, now almost a year post op. Goodbye screws!!

Days Till Surgery: 21

Surgery Day: October 8th

SUGERY!! Set… yet again

Posted by emi2hips in Hip Journey and tagged with , , , , , , , , ,

It seems like just yesterday I was telling you all that surgery had been set for April, and then just a few days before it was supposed to happen my surgeon and I decided that my left leg was not nearly far along enough and we didn’t have enough answers yet to move forward with my right hip. It was a disappointing day, yet I new that my surgeon was right and that I needed to trust his judgment. Well here I am, and its about 5 months later and I have improved enough on my left to at least make the surgery possible to get through. In terms of answers of what is going on with my left leg… well… we are searching for them.

Regardless of not having answers for the left, we are now moving forward with the right… Surgery has been scheduled for OCTOBER 8th. I do not have the official time to go in (as I wont find that out until the day before) but I was told that I am his only case of the day and will likely be the first case in, meaning that I have to be there bright and early at the break of dawn. But we shall see as that draws nearer. So just under 8 weeks left to go until that surgery date and in the mean time I have to meet with more neurologists to attempt to find answers for my left leg, the pain management group as well as the anesthesiologist on the case prior to surgery, as well as the pre operative appointments that I need to complete, and multiple appointments with my surgeon.

I am definitely excited to have a date set. This gives me a point in time to look forward to, something to work towards. But at the same time I am also very nervous and for the first time, quite scared. Because of my experience with my last anteverted PAO, the anticipation coming up to the one on my right is even greater than before. It is going to take a lot of conversing with my surgeon to put my mind at ease over this upcoming surgery.

So what’s being done this time? The surgery, as I discussed recently, has been decided and will be an anteverted PAO, similarly to the left hip that I had done almost a year ago now, last September, Basically I have what is being titled a posterior dysplasia in addition to what is assumed to be a pretty destroyed capsule (as this is what was discovered on the left). The goal of surgery is going to be to reorient my acetabulum (socket) to cover my femoral head better thus giving me a better shaped socket with more bony stability and then to enter the hip joint, address whatever complications are found there and to reconstruct what needs to be fixed of the capsule. The capsule plays an integral roll in the stability of the hip joint as well and it is just as important that any rents in this are repaired as much as possible. I’ll talk a bit more with you later about what the actual surgery entails and how this is all going to happen.

In the mean time I need to go hop on a flight back to Boston so that I can then start my 48 hours of insanity which includes 2 PT sessions, a lot of driving (well over 12 hours worth), an EEG, as well as an appointment with my surgeon. I have been away for the past week enjoying the sun and the sand… which is another story all together but also why I have been absent from my blog for a bit. I shall check in again as I continue these next 48 hours… but for now I do not want to miss my boarding call!!

Just Keep Swimming.

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , , , ,

“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they’re right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.” 

Last I wrote to you I had finished a day of pre ops, and an MRI at 3:45 am, and over all things seemed to be going fairly smoothly. Well, I guess I spoke too soon, because Thursday was full of anything but good news. Again there are just more questions that have been added to the list of things needing answers and there are many things that (yet again) I find too confusing to explain till I know more. So here is what I am comfortable giving you at the moment.

First, I suppose lets start with the MRI. It was confirmed that the area of concern on my thoracic spine is not an artifact (misrepresentations of tissue structures seen in medical images) and rather is actually something. The thing here is what is that something and how is it going to affect our moving forward. There are several things being considered at the moment and I am waiting to hear back from my surgeon on this based on his discussion with the neurologist. Related to this topic is the fact that the anesthesiologist in talking with my surgeon decided that it is unsafe to place an epidural in my spine. This will have an effect on post surgical pain after the right hip surgery, which as my surgeon put it, will be extremely rough to say the least.

Another thing you may find interesting is the test where my surgeon took a pair of scissors and started to not just poke me but bear down with considerable force trying to elicit a pain response. Using a pair of suture removal scissors, he bore down into the great toe on my left foot; I didn’t move. It felt like a blunt object. The same feeling was felt as he moved through my foot and the leg below my knee. I did not move and remained sitting there my leg just hanging perfectly still. When he did not get the response he wanted, he moved to my right to show me what should be happening. He bore down into my right toe with the scissor tip and OUCH! I yelled, as I involuntarily pulled away from the painful stimulus (similarly to how you quickly pull away if you put your hand on a hot stove). He tried a few other spots on my right leg and they hurt just as much. Geesum I said that is not nice! He went back to my left leg and again I did not move. We determined that I am this way from just about mid thigh down. There is a bit more of a pain response to the scissor stimulus above mid thigh and around the hip.

All of that said, my surgeon and I are considering a lot right now, and I have purposely left out a vast amount of information here, simply because much of it is either not definitive or just far too confusing to explain. However, as you can probably deduce from what I

Pavlova- a new favorite merengue based desert introduced to me by my Aussie hip sisters. Delicious!

gave you, we are not moving in a favorable direction. I go back in a little over a week to meet with my surgeon again and they are also taking xrays at that time. I am not sure where all this is going to lead; all I know is that when things seemed bad enough, they only got worse. The hardest thing for me here is that I feel trapped; trapped with a left hip/ leg that is not quite functioning despite constantly trying to work on it, and with a right hip that locks and clunks and is in constantly pain 24/7. To know that it may be a few more months till I have the hope of having even one good hip, is simply a daunting thought. Although I know it may be for the best, it does not mean that it makes it any easier.

On a bit of a brighter note, I spent the few days after these awful and disappointing appointments baking for Easter Sunday. I made 6 different types of cupcakes (if you can believe it!) and also pavlova. It’s a darn good thing that very little went wrong in this baking process because honestly I don’t think I could have emotionally handled that at this point. It was a good creative outlet, and a bit of baking therapy, but to be honest with you the events of the past week took such a toll on me that even baking wasn’t much of a help.

Cupcakes- the result of my baking therapy.

Before I head out for the day, I have got one final story for you from the weekend. Last night I arrived back in VT much later than I had intended; I was annoyed and tired after hitting massive amounts of traffic and adding a good extra hour and a half or so onto my trip. I brought my backpack and duffle bag into the house and down stairs and noticed that there was a note that said “to Emily,

from Anna and Jess.” It is always exciting to see what piece of sanity my Aussie Hip Sisters have provided me with (we all try to send a bit of sanity to each other once in a while). To my shock, they had managed to get me a fish!! The note with it reading: “Just to remind you that you’re a fighter and have the strength to just keep swimming…” Come to find out they had worked with my Aunt to make this happen, and I can not thank them all enough. It may seem silly, but the significance that this has at this moment is massive. I am at a point where I am frantically trying to search for hope and trying to keep my strength up, and sometimes all it takes is a reminder that someone understands, and most of all believes you. We have yet to name the fish… this is something that my hip sisters and I will have to do together, though Anna has already voted that it needs a strong name!

So, until I have more answers and more of a direction with my hip saga, I will try to smile, to keep my head up and to hold on to whatever threads of hope and strength that I can find. However, things are getting increasingly more difficult and there are going to be days where the tears and frustration will override it all. Sometimes though crying is your brain’s way of working through things, or resetting and being able to move on for at least another day. The most important thing is that no matter how difficult this gets, that I just keep swimming, even when there is no end in sight.

Days Till Surgery: 15

Surgery Day: April 24th, 2012

The new addition to the hip sister family.

2 days, 2 road trips.

Posted by emi2hips in Hip Journey and tagged with , , , , , ,

The word “insanity” does not even begin to describe the past two days (Tuesday and Wednesday). However, last minute appointments and tests being scheduled is not uncommon in my hip journey. Quite frankly, I rather enjoy it since it adds a bit of excitement and spontaneity to all this if you will. There have been last minute meetings in the past, as well as one of the most memorable, a midnight MRI (which I found out about in the afternoon the day of) in the fall of 2010 during which my roommate and a good friend of mine took a road trip from UVM to MA which is about 4 hrs down and 4 back. Its times like these though that make this hip journey worth it and more of an adventure than anything.

Monday morning, I found out that I was meeting with my surgeon on Tuesday afternoon at the end of his day. I can not explain to you the relief in meeting with him; there were so many thoughts on my mind that I wanted to discuss with him, and of course I hoped to make a bit of progress in the forward direction regarding my case. This appointment could not have come with better timing. Since it was UVM’s vacation this week I asked Harley, a good friend of mine since freshman year in college, to come along for a road trip (she had been with me on the midnight MRI too). She gladly agreed and we decided upon meeting at a park and ride on the highway and taking off from there to go down to MA. I think it was the most fun that the two of us have had in a long time.

So at 10: 45 am we were pulling out of the park and ride and on our way down to MA for a 4:30 pm appointment with my surgeon. The whole way down we were laughing and talking about everything that we haven’t had the chance to since we don’t get to hang out all that often without school. It was a really great distraction from my nerves for this appointment. Upon arriving at the hospital we were about an hour early so we went to the cafeteria where Harley did some homework and I read my book. To be honest though, I have no clue what I read; my nerves had crept in and I became my nervous, silent self. Harley kept trying to make me laugh, but it was not exactly working.

For the sake of the length of this, I shall tell you a bit about the appointment itself in a post within the next few days.

The drive down was certainly well worth it even just to make small advances in where we are going, and also to have valid and good discussions on the present situation. Upon leaving, the schedulers had already gone home, so the receptionist said that she would call me the next day once she had scheduled the vascular studies, EMG, and follow up with my surgeon.

The past few days the journey and the destination were important to me. In the long run, it will be my hip journey that matters more than the end.

Harley also got to meet my surgeon and her comment to me afterwards was “He is such an amazing person! So funny, and friendly and seems to be very understanding. Not quite what I was expecting but much better.” Even though she had only briefly been introduced to him, it was interesting that she picked all that up just from our conversation. I was in a bit of a better mood on the way home, and this time Harley drove so that I could write everything down for the day (I keep a pretty detailed journal of everything in my computer). We were once again laughing and singing to the songs on the radio, just enjoying ourselves, although my mind was still wrapped up in everything my surgeon and I had discussed that day. When we reached the park and ride up in northern VT we were both really bummed out that our road trip was over for the day, and although we were exhausted we both just reclined the chairs in the car and sat there, staring outside, talking until we both realized that we still had to finish driving home.

One of the best parts of a road trip is you get to know people so much better because you just talk about everything that you can think of and you find out exactly what the other person is like when you are stuck in a car with nothing better to do than talk. Harley and I had so much fun, and I am extremely grateful to a have a friend like her who is willing to take last minute road trips with me, and not only that but support me and listen to me and not only listen but try to talk through things with me and help me bounce ideas around about what to do and where to go with all the information.

I got home around 11 but did not get to bed till around 3 ish because I was finishing writing my journal out, a friend called in the need of someone to talk to (and I was really gald to talk to her too) and then my hips just did not want to calm down pain wise. I didn’t mind going to bed that late though because I figured that I could sleep in a bit the next day. Well… Think again Emi!!

8 am… my phone rings. I groggily toss an angry hand over to it and flip it over only to see that it is a clinic number. OH SHOOT!! I pick up and say hello, trying to sound as awake as I possibly can. The woman on the other end says to me, “I know that you and your friend just drove back to VT last night, but what is the soonest that you can be down here?” I thought she was kidding. “Um are you serious, like as in today Wednesday?” I asked. Yup today she said, I am able to put all the vascular studies that your surgeon wants on the same day today. OH. MY. GOODNESS. I decided to give myself a bit less than an hour to get dressed, make breakfast and pull together a bag to take with me for the day. Meanwhile I had only slept 5 hours (I had only gotten about 2-3 the night before), and I had not even been home in VT for ten hours yet!! I told her that I could be there by 1. “Okay,” she says to me “I can give you an extra half hour and I will schedule the tests for 1:30. I will call you on your way down and let you know exactly where you need to go and all that but in the mean time get on the road.”

I thanked the woman, hung up, stood there for a moment like a deer in the headlights and for a brief moment asked myself “Em, what the heck are you thinking?! This is insane!!” Once I was done with that temporary shock I went straight to showering quickly throwing on some sort of outfit, pulling together my bag and some fruit for breakfast, then started my car and off I went. Back for another 4 and a half hour trip to MA.

I was there in time for the vascular studies, and had emailed my surgeon in the mean time letting him know what was going on. The woman had also informed me of when the EMG and follow up with my surgeon had been scheduled. Once the vascular studies were done I went across the street to grab a coffee before getting back on the road and was on my way back up to VT by 6:30 pm. Again I got home around 11 but by this time I don’t think I would have been able to tell the difference between a bed and the floor. I was beyond exhausted.

The best part of road trip number two: there was a total of 8 people who all asked me “What the heck happened to you, was it a skiing accident?!” EVERY SINGLE ONE OF THEM, equated my injury and presence on crutches to a ski accident. What were the odds of that? Then when I said, no actually I had hip surgery for a condition I was born with, the eyes bugged out of their heads and more questions followed.

Today (Thursday) I didn’t wake up till about noon time and I am still exhausted. Tuesday and Wednesday were two days full of a lot of driving, a heck of a lot of rough information, and had left me physically and mentally just done for the week. I have completely lost track of the days for the week after all of this.My hips by the end of yesterday, were screaming, and the pain continues to be very troublesome today.

Upcoming Events in Emi’s Hip Journey:

March 6th: Surgeon meeting (done)

March 7th: Vascular studies (done)

March 29th: MRI of thoracic spine, and meeting with neurologist

April 3rd: Pre- Ops

April 5th: EMG of left and right leg  and meeting with surgeon

April 24th: Surgery- Right anteverted/ reverse PAO

Days Till Surgery: 47

Surgery : April 24th 2012

Little Miss…

Posted by emi2hips in Hip Journey, Uncategorized and tagged with , , , , , , ,

The snow began falling and I began a 5 hour drive to MA. My hips were angry and painful within the first hour of the drive and would not let up the whole way home. The hardest part with driving is that the seatbelt rests across my left hip at just the wrong spot over the iliac crest and screws, and I obviously can not have my right leg severely turned out because I need to somehow use the pedals. At any rate, today I am not much in the mood to discuss what has happened in the past few days, quite frankly its been on heck of a week since last Wednesday. However, as I drove home today I played in the midst of my many songs, one song more often than not. The song is “Little Miss” by Sugarland.

“Little miss done on love
Little miss, I give up
Little miss, I’ll get tough, don’t you worry about me anymore
Little miss checkered dress
Little miss, one big mess
Little miss, I’ll take less when I always give so much more

It’s alright, it’s alright, it’s alright
Yeah, sometimes you gotta lose ’til you win
It’s alright, it’s alright, it’s alright
It’ll be alright again
It’ll be alright again, I’m okay
It’ll be alright again, I’m okay (I’m okay)
It’ll be alright again, I’m okay

Little miss, do your best
Little miss, never rest
Little miss, be my guest, I’ll make more anytime that it runs out
Little miss, you’ll go far
Little miss, hide your scars
Little miss, who you are is so much more than you like to talk about”

- Sugarland 

We all have ways of finding our determination or trying to hang on to it. Most of us have more than one way and

This was a drawing I did the other day, just quick and to keep myself entertained and to calm down a bit.

have to use a combination out of our hat of tricks to somehow muddle our way through. Part of my bag of tricks is music; there are certain songs that I will listen to that for one reason or another remind me of where in the world I am going, what the heck I am doing here. It may sound silly, but I find a lot of the will and strength to move on. After these past few weeks there are several songs that I have been listening to over and over again, and incase you are wondering, no I do not get sick of them. Thats the thing with these pieces, I can put them on repeat and let them go over and over again and somehow, someway they keep me going. Along with music, I also use baking, drawing, reading, (things that are stationary since I cant be active really at the moment) and photography can also go in there when I have the energy, and knitting (with a lot of holes)- but I can only knit when I am not already frustrated. Music is good in all situations though which I can not say for anything else.

“Little Miss” is a song that I find I can strongly identify with, and there is something about it that comforts me when I feel like total crap and want nothing more than to give up. Today on my ride home, I listened to this song nearly every other one that played; Sometimes I just sat and listened and thought, and other times I sang along, belting it out loud and clear. Even now, I am sitting here typing this, my dog’s head on my lap, tears streaming, hips in pain and listening to this song; its on repeat in my itunes at the moment. I told you I would share with you as best I could what I was going through, well this is today, and quite honestly its not pretty. Hopefully I have a brighter post soon, but until then check out “Little Miss” its a more upbeat inspiring song :)

Just use Duct Tape, it fixes everything

Posted by emi2hips in Hip Journey and tagged with , ,

Today I think back to a card that I got after my last surgery. It says “It just goes to show ya- almost anything can be fixed with duct tape!”  It came to mind as my Dad used duct tape to seal something off, just one of the many “duct tape repairs” Some times I wish my hips could both just be duct taped and we could call it a day and life could resume! Sad to say duct tape was not a part of the other day’s phone conversation with my surgeon.

When you have been at something for so long, an expected phone call becomes much more than just a “phone call.” Your nerves are heightened and all you can do is think about this call, what news may just come from it. I know, sounds ridiculous huh? The ambiguity of my situation though, is one of the most frustrating things. Imagine having gone through three essentially failed surgeries, and not walking for a year and half, yet not knowing when you will and not having an exact answer; being in pain all day everyday and not being able to see an end (just cause you know there is one somewhere doesn’t make it any better). Maybe you have been there, maybe someone you know has, but everyone takes it in a different manner and finds alternative ways to overcome the situation.

For me, this phone call is part of how I get through. Its information, it’s a step in the forward direction and not in the reverse. It’s a chance to learn something more concrete that I can wrap my head around about my situation. Sometimes there may be no more information but its just a review, a consolation that we are moving onward toward a solution.

So there I was sitting at Starbucks reading my book (Complications: A Surgeons Notes on An Imperfect Science), quite an ironic book in fact to be reading while in my situation. I had been hoping to talk to my surgeon all week, hoping that he would have more information,  and thankfully today he said that he would call as soon as he had finished up a few things. I jumped every time my phone blooped or blinged or rang in any sort of fashion (I must have been quite the sight, this person who couldn’t stand her phone going off!), and finally my phone rang, the hospital area code at the beginning of the number. Taking a deep breath, I pressed that green button, waited a moment then said hello.

This conversation could not have come at a better time. I am beginning to fall apart, beginning to feel like I have less and less control over the situation, and to talk about it with my surgeon who basically has the “steering wheel” in his hands, brings everything back into perspective. At the time of our conversation there are many logistics still being worked out for surgery, but we are now looking at three dates at the end of September for surgery, and a definitive one is most likely to come this week.

By the end of our conversation my hands and legs were rapidly shaking and I was practically holding my breath. As soon as I hung up the phone though a wave of relief rushed through. I may not have found out that much more, but just knowing those few dates, and a bit more about the procedure gives me enough to keep going for another week.