Tag Archives: physical therapy

Battle with Walking

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

“You don’t learn to walk by following rules. You learn by doing, and by falling over.”

-Richard Branson

When you were little you were scared of the dark, or maybe it was the boogie monster. As a teenager maybe you are scared of speaking in front of a crowd, or maybe you got in your first car accident. As a college student you fear not finding your place in the real world, whether that be in family, job, or friends. Of course I am making assumptions here but you get my point, we grow up with fears, hopes dreams, aspirations, goals, sadness, weakness, strength, frustration. Some of these we expect to experience once, others many times. We expect to learn how to ride a bike once, and to never forget, and amongst these things is sitting up, crawling and walking.

I realize that I have a few posts about walking.– I’ve had to go through this a few more times than once unfortunately or maybe fortunately I don’t know. It certainly does not seem to get easier at any time, this process of learning. I went back and looked at my older posts about it and here’s the thing, each one is different because each time has been a different experience and there have been different circumstances depending on where each hip was at.The battle with walking never seems to end.

There is a gate belt tight around my waist, the goal being that it wont slip and will serve the purpose of holding me up. My PT reaches her arms out to help me stand up which is easily done (although that was not easy right after surgery, nor was learning how to sit up straight without falling over. They were learned fairly quickly in the grand scheme of things but the point was I had to get used to it again). I hold tight to her forearms, with an immense trust in her that she is going to help me. Two other therapists stand with us ready to assist in this endeavor. One gets behind me and puts her hands firmly around the gate belt; the other goes down to her hands and knees and is going to help with the gait pattern of my feet. My therapist remains in front of me holding on, and me, I just stand there thinking so hard just to keep my balance, already holding my breath knowing what comes next. Today, we start working on walking.

I’ve been here before. In fact I have been here many times before; this point that you reach in rehab where you are learning to walk again. We are not talking about a simple weaning off crutches and just a matter of strength. This is different. I have done it several times actually, this learning a gait pattern and learning where my hips are in space and the proprioception. Its hard to explain because unless you have an issue with them, you are not so acutely aware of the changes in the proprioception of the joint. I have had to go through re learning this after several surgeries, and just as I started to get it I was in for surgery again. But this process got particularly hard after my left hip anteverted (reverse) PAO in September of 2011. I struggled then to relearn walking and the pattern and the proprioception of my joints and since then have been through 2 more surgeries in the saga, the latest being my right hip reverse PAO in November of 2012. I have yet to get to the end of learning to walk and it is infuriating. Now here I am facing it again, still trying with everything I know to get it down and still getting frustrated, feeling like I am failing with each try and starting to get angry that I haven’t been able to completely relearn. Yes, it takes time, but this is way more time than it should ever take. This is taking far more time than it took to learn when you were a baby.

Im staring at an angle my eyes just seeing my PT’s knees and the floor and nothing else; I don’t look side to side, I do not look to where we are going or at the other PT’s helping us. I am nervous, and scared which is very very hard to explain if you have not been through this process. We start with picking up my right and moving it forward, meaning that weight goes through my left. It buckles and I feel a strong pull on the belt and my grip on my PT tightens; I suppose you can say I felt as though I was holding on for dear life. The PT at my feet is holding my right keeping me from letting my ankle roll in and helping me move the left at the same time. I have no problem putting weight through my right, I do in placing my left one forward. Its there, I think, and we are back to moving the right. I move it as quickly as it will allow, relieving my left, and straightening my knee locking that right leg out easily to step on it. My right ankle rolls beneath me ending collapsed inward, but I now feel most balanced. I am thinking really hard to make this happen, intensely just concentrating on one thing, not letting my focus waver. My breath is still held, and I am depending more and more on my PT; she knows me well, she knows I want to be pushed, she knows I want to walk and how frustrated and devastated I am that I have not been able to get there. She also is well aware that I am scared, and is cautious of what I am feeling in terms of both my hips as we walk.

Finally we get to the window sil on the other wall where we sit for a moments break. I am out of breath, as I finally am breathing after that stretch of walking. It is a lot of work mentally and physically for me to make it that far, even with three people helping. I am not proud of that, it was messy and it was far from anything that it should be. I do not think that this is a pessimistic view of what we had just done, I simply do not see it as anything that is to be recognized at this moment in time. I can not even make it through a whole day on crutches yet.

After our moment (literally a moment) of break in between walks we headed back to the table. Again one PT took hold of the gait belt, my usual PT holding out her trusting arms and me clutching tight, breath held before we even started. This time was a little harder for me as the PT on the ground moved my right through a better gait pattern and made me attempt a balance on my left a bit longer. I wanted to scream in frustration every time the left buckled beneath me. My focus remained on one spot, and that spot was a blur as my mind was truly focusing all its energy on getting me to move one leg and then the other. It is extremely hard to describe to you all, how frustrating this whole process is because this is something that we never expect to lose and rarely for this long.

When we finished and my PT and I walked back to the other room she asked me if I was scared. I just nodded. Then I attempted to describe what it felt like to me. There really are not enough words to describe it and this is again where it is difficult to understand if you haven’t had an issue with your hips that makes you painfully aware of where they are and what it feels like. My right one I said, is great; sure it hurts to stand on it, but it works and I feel it and its solid. I do not feel like it is slipping any more, I know that it is there. I trust it. I only wish my left one felt the same. My left, I tried to describe, I think I am moving it forward, but im not 100% positive and when its on the ground I do not feel like it is there and that I have something that is solid to step on like my right. I am aware that my leg is there, I can initiate movement in all directions, but I have a lot of issues finishing them and it is very hard for me to tell where my leg is in space if I am not staring at it, getting that visual input.

I can’t even begin to call this walking. As I said I still can’t quite make a whole day up on my feet on crutches, and this whatever you want to call it was a mess. I know that we are going to keep trying, that that is the plan for now moving forward. I also know that there are going to be many days like today where I come home and my hips are in pain, and I just want to cry in pure frustration with it all. I am doing the best I can. Often times I feel like that best is not enough, but what more can I give? It took 4 people today (myself included) to get a few sloppy stumble- ish steps to go across a room. I know that people say you have to start somewhere, but this, this is not somewhere not yet because still there are no answers.

“My grandmother started walking five miles a day when she was sixty. She’s ninety-seven now, and we don’t know where the heck she is.” 

-Ellen Degeneres

Torture Hour Resumes

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

“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”

-Thomas Edison

We all knew this day was coming, physical therapy, better known as torture hour was bound to resume at some point following my leave from rehab; that day was yesterday. In many ways I am glad to be back and actively working with another person to facilitate the best recovery possible for both of my hips. I have been working on my right leg/ hip on my own since being home from rehab, but there is something about working with someone, collaborating if you will on making the recovery not just mediocre but optimal. Of course there is the trade off of increased pain, but its all a welcomed challenge.

Yesterday, was my second day driving (the first was Monday to meet a good friend for coffee and then to drive up to the

I came across this other day and found it wildly appropriate. Never thought of hope, as H.O.P.E.

I came across this other day and found it wildly appropriate. Never thought of hope, as H.O.P.E.

clinic), which has a certain freedom with it. Its unbelievable how good it felt to be the one that got myself from point A to point B. It’s a big milestone in all of this. I pulled up at the all too familiar PT clinic (I’ve been here since I was 15– of  course this has been interrupted by my few months here and there at PT in VT, but overall I have been at this clinic), and headed in through the front door; it was as though I has never left. Everyone said “hi” to me except for the few new faces that I didn’t recognize, which made me feel welcomed and cared for, more than just a person. Some commented on how they had watched me on the Today Show in June and others asked how the recovery was going. I filled out the all too familiar paperwork, with all my previous surgeries, the functional analysis sheet amongst the signatures for consent to treat and such. Then my PT came out front to meet me and I could not have been happier to see her. “Did you miss me?!” I said with a big smirk, and she just gave me a hug, and I thought to myself everything is going to be ok, I’m “home” in a sense of where I am for the rehab aspect of this.

We went through the ROM of both my legs. One thing to understand is that I used to have far more flexion and external rotation (ER, flexion at 90, and turning the hip out) than a normal person due to the anatomy of my hip joint and I had almost no internal rotation (IR flexion at 90 turning the hip in). Now my ER is much less than it was, and the IR is increased and is slowly approaching the normal range (though not quite there). Flexion is decreased big time, where both legs just barely make it to 90… which is just enough for a person to function, ie sit, go upstairs, ride a bike. As she went through my functional analysis sheet, I said, “yup its kind of sad I am not very functional.” It’s a scale of 0-5 and I have nothing above a 3… and the only things at 3 are getting in a car, putting my shoes on, and sitting for an hour. She laughed and replied, “what?! You mean to tell me you aren’t doing squats?” Well… of course I do them every day I said joking along. I can barely walk let alone do squats! As she went through the strength testing with both legs, my right was much stronger than the left; with the left I can not even initiate most movements and I just got extremely frustrated with myself (a common feeling in this process).

funny little illustration of a bent knee fall out which I can do on the right, but the left is a total fail.

funny little illustration of a bent knee fall out which I can do on the right, but the left is a total fail.

While laying on my back with my feet flat, knees up she had me do a bent knee fall out with the right (simple enough) and then the left. All I could do was laugh as I tried to pull my leg back up and I couldn’t get it to budge. I pulled it up with my hand and my PT just laughed saying yup ok that’s an issue. Oops. She had me try doing a clam with my left while laying on my right side… hahaha that was not going to happen no matter how hard I tried. I just had to laugh again, but I think that those laughs were my way of choking back tears of frustration and disappointment; upset over the fact that I simply could not make that action happen without major assist from my PT.

Flipping over to my stomach I was able to move my right leg in extension fairly well and my left, well I barely got it off the table and my knee bent. Wonderful. UGH. That’s about the only work of frustration to describe the left at that point. She went to work on my spine and see if there were any trouble spots in my lower back. At one point I arched forward into the table cause it hurt where she pressed. That’s L3, my PT informed me that L3 is where the nerve root comes out that heads to my quad… hmm… connection? Maybe? Who knows at this point. Just something to keep in mind.

When I stood up and we worked on weight shifting my left crumbled under me no matter how hard I fought to keep my knee straight. We headed over to the leg press instead, where my right in a single leg press did really well with three sets of ten at 50, but the left… haha I just have to laugh again. Laughing cures all right? Well the left shook and didn’t even make it to being straight at 20. Flipping heck. I did really well with the right going up on my toes. You straighten your leg and let your heel hang off the leg press platform and then just raise up on your toes. Simple and familiar to a dancer and I was proud to see that I could do them. Of course getting from place to place in the clinic I am working on walking with a semi- normal gate, crutches, left, right. This is something that is going to become easier as my right one gets stronger and can bear full weight for longer periods of time. At the moment, that time frame is short. The left is just a source for tripping myself and that’s about the only purpose it serves besides helping me keep my balance. To facilitate walking as normal as possible with crutches, we lock my left knee back, and then do exactly as I said earlier, crutch, left, right. This will of course progress but this is the start and already I am going longer distances. There is a quick 30 second video clip below of how walking is going. My right is following a relatively normal gait pattern (no longer turned out!) and the left is braced to keep it from completely collapsing under me. Neither one really takes full weight at any time.

So all that PT stuff is fine and dandy and sure I can rattle off to you the facts of what happened during the session, but I want to focus on the feeling that I have in my hip. It does not move! Did you hear me world? MY HIP IS STABLE!! It is extremely hard for me to describe to any of you who have not been through the feeling of loose and unstable hips. For years I felt like everything was just moving around in my joint, never felt like I had a stable surface and I learned to adapt but it still felt all loosey goosey, and certainly created problems the more internal derangements it caused. Now here I was doing these exercises on my right leg, and my hip finally felt like it was not going to go anywhere! The pain is still there but it is very different from prior to surgery. To have two hips that are stable and feel like they are in place is incredible and I don’t know how else to say it. It is the first time in my life that I am feeling this in both hips. Its an indescribable feeling, one of the best things that I have had. I only wish the left one was in the same place as the right function wise.

So torture hours have begun, I am going to focus on strengthening the right and getting it to a point where it can be my main support again to not only go short distances but long ones as well. I am more than ready to push that one through recovery to make it the best that it can be. And in the mean time I need to try to not let the left one get on my nerves. I am grateful to be back with the same physical therapist that I have known for many years, and so thankful that she is here with me every step of the way to figure this out and to work with me to be as functional as I can.

“Strength does not come from physical capacity. It comes from an indomitable will”

-Mahatma Ghandi

Visit to a Canadian Hip Friend

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

Its day two, or really just my first day here in Canada, visiting a hip friend, but for all intensive purposes lets call it day two. Her and her father picked me up in the states when I flew into the local airport and then we drove the rest of the way into Canada which was no more than a half hours drive. As we crossed over the boarder we debated what we would say if asked how we knew each other. To say that we know each other because of hip surgery is fairly unbelievable because of our ages and then to explain our story would just be a hassle. We landed on that we would say we knew each other from school, but then could not decide what school! Dilemmas dilemmas.

Anyhow lets talk about how we met since that is relative to this blog and my hip journey; in fact this whole trip here has a lot to do with my hip journey. This friend of mine in Canada had started writing replies to my blog when it was just in its beginnings (I am now just over 100 posts and have been writing for just over a year now!) and I noticed that she was really keeping up with what was going on. I finally decided to email her with more of my story and asked for more of hers. From there we started emailing back and forth big long essay emails and then eventually graduated to skyping and texting and depending on each other for support as we progressed through some of the toughest events for both of us, obviously in saying this I refer to hip surgery and the wave of effects that it has on every other aspect of our lives.

Although she and I have not had the same hip surgeries, we are both similar in that we have been told that they have failed, and we have each been through 5 and are patiently (maybe not patiently would be more accurate) awaiting our 6th in the fall both on the right hip. She is currently in med school and on medical leave, and I am in an undergrad program in medical laboratory science with hopes of med school, also on a medical leave at this moment in time. We both should have been finishing our senior years, and neither of us will have this pleasure and are both coping with watching friends as they prepare to graduate and move on to the next steps in their careers. These are all the struggles that come with are hip journey amongst many more.

Being on this trip I feel like I actually fit in. I am around a good friend whose mobility is comparable to mine; ie short distances are doable, medium distances start to push it, and long distances without sitting are just not a smart idea. The longer distances near the impossible. We both enjoyed a day of relaxing today by the pool and just hanging out getting to talk without all the interruptions of connection problems on skype and seeing a whole person instead of a picture of their head on a screan that moves when the video decides to cooperate. We finished the day with physical therapy which her father, her and myself all need to do and rotated through the bike and exercises. I could not help but laugh. It is too funny to be around two other people who have to do PT just like me each and every day (though I will admit I am definitely slacking while im away right now).  We even took a nap today!! I know that sounds trivial but it is something that I need to successfully get through my days and having a friend who needs that too, and understands how important that is, well that’s just priceless!

Tomorrow we head over to Niagra Falls, which I have never seen, and I am very excited to be able to experience it with someone who has been there, and also knows that we need to do this in a hip friendly manner. Hopefully I’ll have some fun news and updates as well as pictures to share with you when I get back from that. I think that this trip is something that myself (and I hope my friend too) will really benefit from pre surgery, spending our days of nothing in the company of a friend rather than alone; believe it or not it truly makes a difference in the quality of the day and the genuineness of a smile or the happiness expressed throughout the day.

I cant wait to see what the rest of my time here in Canada with her brings! Until our “hippie” return from Niagra…

Days of Surgery: October 8th

Days till Surgery: 40 days

Cakes and Chaos

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

The past few days have been nothing short of insanity. I feel like the world is spinning a million miles a minute… yet at the same time I feel like time is not progressing at all towards surgery. If anyone can reason that one out… well kudos to you because I have yet to figure out a grand old explanation to that feeling.

Friday, I started my day with PT, which was actually a make up from the day before. A very long story cut short… in

I had to get up to finish 4 dozen of these mini chocolate chip cookie dough cupcakes for the customer.. painful on the hips… but glad to spread the sweetness :)

my travels from state to state, I inadvertently forgot my bag with my medications in it and as a result did not fair so well all day Wednesday and into Thursday, which led to a very cranky, exhausted, in pain, and unable to move Em that morning. There was no way that I was getting out of that house by 7:50 am to get to PT; my hips were stuck. I am not proud of this moment and how I missed PT. However I knew that I was going away for the next week, or a little more than that actually, and that I needed to get in some PT before I went, so I called and they graciously worked with me to reschedule in on Friday. It took multiple phone calls throughout the day but we got there.  I had to drag myself out of bed to finish a cupcake order (which I was happy to do for the person as they are a very sweet customer) but this caused a lot of pain to me and my hips.

Thus there we were Friday morning and I was heading to PT. It was certainly a work out to say the least and we are trying to avoid aggravating the right, and working much more on my core and my arms to give all the supplemental strength we can to my left for this upcoming surgery. Focusing directly on my hips is not a priority in PT at the moment because they are basically at a standstill in their progress. Strength is going to be more important to me in this upcoming surgery.

From PT I was sweating, I changed in the car, freshened up (I am so used to living out of my car) and then I headed 5 minutes down the road to UVM where I was meeting with a person in the deans office regarding a cake consult for an upcoming order. I had never met her before but she had contacted me regarding her daughters birthday cake and a recreation with some modifications of the cake that I did for the today show. We talked about colors and adding butterflies and a few other sall details that I think would be perfect for the theme of the party and the age of the child that the cake is for. This cake is due on the 8th just after I get back and I have to start the prep for it on the very day that I get back. Of course now, you are probably wondering, well where the heck are you Em if you have to “get back?” We’ll get to that…

The finished cake at the end of 2 hours…

So to continue with my Friday, I went to that meeting and from there on a last minute trip 4.5 hours to the hospital where my surgeon is located. We had just decided the day before that this meeting was going to happen and I have to say I am very glad that I drove the total of 9 hours to go to it. We went over some major details about surgery and he answered a lot of my questions, which has really helped to calm me down before embarking on the adventure that I am currently on as I write this. The problem with this Friday afternoon appointment was that I was supposed to start a cake that was due on Sunday. I was really going to put myself behind and not give myself nearly enough time to put detail into the cake that I usually expect out of myself.  I knew that I was going to be throwing it together and disappointing myself. I was stressed out, and frustrated with everything and wanted nothing to do with that cake anymore. It was to be based on hockey and go along with the team that the child played for. I was dreading it and still wondering how I was going to get it together. I got home late Friday night only to get up early on Saturday morning.

Saturday I dragged myself out of bed, and limped on my crutches up the stairs to make 4 batches of marshmallow

My brother and I in the 7th row at the concert!

fondant in the colors of white, green and golden yellow for the cake that was due on Sunday. I was not expecting the humidity to be high, and therefore did not prep my fondant to deal well with it… this would turn out to be a mistake. I then figured out that I needed to go grocery shopping to finish getting ingredients for the cake, which I was not planning on and it took more time out of my day. I was rushing around trying to get this cake done and baked before I had to leave the house at 4 pm to go to the mat Kearney and Train concert that night with my brother. Talk about not having enough hours in the day, geesum I felt like I was trying to complete a miracle.

The concert that night was fantastic and I was very glad that I went, but I was also wondering how the heck I was going to be awake enough the next morning to do that cake. By the end of the concert my hips were far beyond gone, in fact I was wishing that both could just be cut off, somehow severed from my body because the amount of pain and dysfunction they were causing me that night was not worth their existence. This pain would continue through the

The cake… we decided to personalize it… give it a little humorous touch!

night and into Sunday morning where I ended up sleeping a bit later than I wanted. I still had to frost and decorate a cake; the decorating happened in a matter of 2 hours, from 10 am to noon and I was not pleased with the cake, I was wishing that I had more time, but I also knew that it was going to have to do.

I attended the party, since it was the birthday of my cousin, exhausted and in pain, however you put on a face, get through the day and essentially fake it until it comes true (I guess I have to just keep faking it because it has yet to come true). I knew that I had a 4.5 hour drive without traffic, which I was bound to hit, in order to get home so that I could catch a flight out to Canada the next day. My hips did not tolerate the drive well and I was cursing myself for not giving myself a moment to come up for air in the past week. In one week I drove over 1500 miles!!

Finally we come to today, or now rather it would be yesterday, when I arrived in Canada. I spent the day packing and then boarding a series of airplanes to finally make it to my final destination where I would be meeting a friend of mine who I have had the pleasure of emailing, skyping, texting and facebook-ing BUT never meeting in person; Monday we met and it was a joyous day indeed!

Flight out… at the end of a crazy week to begin a much calmer and more enjoyable one.

At the moment it’s a bit early to get into the story of how I ended up here, why we are friends and how truly exciting this actually is… maybe I will get to that later today or tomorrow… either way it’s a story that seems like it would be impossible, but yet here I am and looking forward to a fabulous week. The pain that my hips are in from all the walking and the airplane rides is definitely worth it!

Surgery Day- October 8th

Days Till Surgery: 41 days

Torture Hour Comes Home

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

For quite some time now my uncle and I have been working on a set of my PT exercises at home, and I also have a bunch of exercises that I do day in and day out morning and night. All together this adds almost 2 hours onto my day that is devoted to PT in addition to any time that I put in at an actual PT session, or at the Y. This can add up to 4-5 hours of my day spent on PT total… and make that 7 days a week and you have a part time job!

Here we are at home quad going through large muscle reeducation.

At any rate, it was decided that the most recent addition to my PT regimen, NMES, would be added to my home list of PT as well. A script was filed, and within a week an NMES unit was being handed to me, let the hours of PT at home increase. Torture hour, or more appropriately hours, are a part of my everyday and now I can add to that amount of time at home. The NMES is exactly just like the unit that we were using in clinic except it is brand spankin’ new. Sounds exciting huh? Not exactly. I was not thrilled that the machine was in because this means that I have to work on the neuro stimulation of my muscles outside of the clinic. I suppose that is a good thing and all seeing as I would like to do everything I can to get better, but the thing about NMES is that its not the most comfortable thing in the world.

Many of you may have heard of a TENs unit, which is often used at the sensory level and intended more for pain control. I can tell you from experience that it is more comfortable than the NMES unit. NMES is meant to stimulate muscular contraction, it is used for muscle re- education; in my case the re education of a large muscle group, my quad. It is used in conditions where the goal is focused on re training muscles, and the muscle control. So basically, mine is set to large muscle re-education and I place the 2 electrodes on either end of the quad muscle and then once turned on, it is turned up to the point where (without you voluntarily doing anything) your muscle contracts. You do not want it to be twitching, you want a full sustained contraction. It is believed that this is more effective if you add a volitional component to it, meaning that when it contracts your muscle you perform an action such as a quad set or straight leg raise in my instance. We are also using it while I am standing up to reeducate my muscles in locking my knee back far enough so that it may become a bit more stable for me to stand on.

The other piece of news in my hip life at the moment is very exciting to me… probably not so much to you… but to me

Love the packaging job on this… it apparently takes more than one box to pack in crutches.

its like getting a new pair of shoes!! I have been waiting for this box to arrive, and then yesterday I got a note that said there was still shipping owed on it (even though I paid it already it must have been underestimated) so instead of my box I received a thin piece of paper telling me that 5 dollars and 14 cents was owed and then I could have my package. Therefore today, after getting a late start, I dragged myself to the post office with my 5 dollars and 14 cents on my crutches… one bent and one in okay shape… and my car keys in hand. The line was strangely long at the post office but I waited, in excitement like a little kid who was there to pick up a birthday gift. After all new crutches are pretty exciting when they are the things that come around with you all day long!

Finally I got up to the counter and I handed the woman my money and the slip that listed the package number that I needed. When I asked her if I could have help with the package she looked at me funny, but then I realized that the counter was the height of my crutches and they were not visible. Oh, I said I am sorry I’m on crutches and there is no way that I can carry that box. What I should have done was just opened it up right then and there and given my crutches away. Thankfully the next lady in line offered to take my package out to the car for me; its good to know there are still selfless caring people out there!

Brand new crutches… pretty exciting… like a new pair of shoes!

Once I got home I battled with the box to get it just from my car to the garage. No one else was home so this was up to me. I could not wait to open it! I set them up for my height and set the arm things as well. There are a lot more height options for the hand pads on this pair of crutches which made it much easier for me to set them to the appropriate height for my hyper extended elbows (because of this I actually lock my arms in my crutches when I walk, which I know is not the correct way but this is the only way that I can get around). I am very happy with my new ctuches and they have a different form of adjustment system, clips instead of screws, so they are much easier and faster to adjust. I did however, keep the tops of my old ones (the ones that I have had since my very first surgery in March of 2010) since they are thicker and I placed those on my new crutches. I also had ordered much sturdier and wiser nubbins for the bottom. They have a 2 inch width and fair much better on wet surfaces and last a lot longer. I struggled to put these on but once they were on I was good to go and happy walking on my new pair.

Today, Friday, I am taking a day trip down to see my surgeon (about a 4.5 hour drive both ways, so 9 hours total driving) regarding the upcoming surgery. My hopes for this appointment are that we have an actual set date or at least a better estimate, that we start to figure out more pre and post op details as much as we can, and that we get closer to deciding the exact procedure that we are going to use to reconstruct my hips, since as of two weeks ago this was under a debate. I’ll be back to update later on how all that goes and if there is anything new. In the mean time, I am going to have two very angry hips after all that driving!! Until tomorrow…

Uncooperative Right hip and Insurance Woes.

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

It’s the end of July already. Really? I almost cant believe it because my sense of time is so contradictory. My days, and weeks seem incredibly long and I feel like they will never end but then all of a sudden we are at the end of a month and I am wondering where the time has gone. I feel like just yesterday it was January and I was contemplating taking a few classes (despite the strong objections of others) and then before I knew it, March was here and I was due for surgery in April (which was postponed) and then summer began for those who have a “summer vacation” and from there I ended up where I am now at the end of July counting down to September when that postponed surgery is scheduled to happen. With an injury like this it would seem that I don’t have much to do but somehow I manage to always be doing something; how I am not quite sure.

Yesterday was another typical day in the life of Em, starting early and ending late. I had gone to bed about 1 am after going to a concert with a friend (which by the way was amazing, yet frustrating because my hips were in a lot of pain), and then no sooner had I shut my eyes then my alarm was going off; 3 am. I was out the door by 3:45 and on my way to physical therapy which was scheduled in at 8:30 am that morning. Remarkably I seem to be most awake when driving at these times. I grab my coffee and cold jar oatmeal breakfast (prepared the night before) and I get into my moving home (my car) to begin yet another one of my travel mornings. Then while jamming out to my music with some energy that goodness knows where it came from, I make it to physical therapy. Yesterday though I happened to get stuck behind this person who clearly had not had their morning coffee and was going 20 mph on a 40 mph road at 3:45 in the morning! I was not happy… but once I was around them and on my way again I cheered right up and started singing again.

PT yesterday was in the pool which should have been one of my easier days but instead was riddled with frustrations. Sunday I had woken up with a hip that was stuck in place and did not want to move. This clearly had extended its troubles into this Monday morning and was making for a difficult PT session. While walking in the pool I had quite the trendelenburg limp (not to mention how bad it looked on land) due to my right hip which I could not seem to quite get on top of and keep in place. My right foot and knee were extremely wobbly as they tried to make up for the lack of stability in my hip. Regardless, I couldn’t seem to get the stability in the right without leaning over, limping, to the right side.

My left did pretty well keeping me stable for the most part. The greatest issue with the left is that it fatigues quickly. The water however, is a great advantage to that because it takes away a lot of the pressure and effort that is needed to walk and move on land. Therefore I can last a considerable amount of time in the water before it begins to shake. Regardless of that increased stability in the left though, my right has lost just about the same amount the left has gained (if that makes any sense) so really in terms of my ability to get anywhere, I haven’t gained much.

Following a frustrating morning in the pool I went to bike for a bit in the hopes that my hip would loosen up a bit. As of today I can tell you that I am no better. My hips are in a fair amount of pain still and my right is continuing this streak of increased dysfunction. September can not come soon enough.

Yesterday afternoon I also had the pleasure of dealing with my insurance company and the process of getting a referral. For those of you who have yet to experience this, it’s the most frustrating circle of phone calls that you can get yourself into. I was back and forth for a solid hour and a half with my primary care’s office and my insurance company. All that in the end to find out that this service (unlike every other thing I have had) is actually IN network!! Ridiculous! I was absolutely livid.

Other than that there is nothing too interesting going on in the life of Em, just the usual running around from appointments to PT and filling my time with cake decorating and travelling to and from the two places I live between. Tomorrow I have a morning session of physical therapy (on land so this could be an extremely rough one on my right hip) and then I see my surgeon on Friday… it’s a busy week. I also think that this week I will be giving my first “cake decorating lesson” to a lovely little girl who had asked me to make her birthday cake… and then I asked if she wanted to help! She had given me a drawing and wanted me to create it. It was simple enough to ask her to help… more on this to come! Oh and how could I forget to tell you… my home NMES unit was postponed to Wednesday! Yay!!

Left… Right… Med School… I can do this!!

PT: The Start of NMES

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

This week seems to be going by so very slowly. Now that I have finally “slowed down” from the running around that I have been doing the past three weeks when my hip sister Jess was here, my hips are giving me a piece of their mind- Emily you overdid it, you walked too much, went just a few too many steps, put too much weight on us and now as a consequence we’re going to send lots of pain signals to your brain making everyday long, hard to function through, and your nights as sleepless as possible. Huh that sounds to me like my hips are pretty angry. As you can imagine this is not fun.

I took a flight home in one direction on Monday while Jess went the other; I was home by 11 pm, in bed by 12 and then waking up at 3 am to drive the 4 hours to PT that Tuesday morning. Crazy. Yup I would say so. Typical? Absolutely. Sometimes I find these early morning wake up calls and drives invigorating and refreshing… but today I wanted anything but to be up out of bed with my aching stiff, painful hips that decided they were going to clunk at every opportunity they got. This is how the week has been day in and day out.

This is basically what NMES to my quad looks like (although thats not my leg haha)

Tuesday at PT we started a new modality of therapy called NMES (neuromuscular electrical stimulation), which is not the most comfortable of things. At the moment we are using it to try to get more end range function to my quad- this is something that I addressed in going over my follow up with you the other day. NMES is a non- invasive therapy used for muscle rehabilitation, which applies an electrical stimulus to cause a muscle to contract; in my case for the time being this is my quad. The current is sent to the muscle via leads that go to electrodes that have been placed on motor  points of the targeted muscle, my quad. This basically causes a stimulation of the motor nerves that will then cause my muscle to contract, and I literally sit there as I watch my muscle contract.

To make this a more effective treatment it is beneficial to add in a volitional movement. For example, while the stimulus is applied I can do a quad set (pushing my knee down towards the table) or a straight leg raise, or a short arc quad with a small bolster under my knee. We have the machine set to apply 40 seconds of a stimulus with 10 seconds rest. So I spend the first 10 minutes alternating quad sets and straight leg raises and then the next 5 minutes with just short arc quads, for a total of 15 minutes. It is not exactly the most comfortable method of treatment but the hope is that we will see more function in the end range movement of my quad over time. I will be given one of these units to use at home each day and work on this muscle re- education.

Other than NMES on Tuesday at PT I rode the bike for 15 minutes and did the usual strengthening exercises for my quads and hamstrings. We also needed to do a re-eval for insurance purposes. My quads have improved fairly significantly (although they still have a long way to go) there is a bit of improvement in my plantar flexion (it is now about a 2-, which means it has little more than a flicker) and then my dorsi flexion is still non existent. Bummer. I feel like at this point for the amount of time and effort that I put in that none of my muscle groups are getting the results that I wish they would. Often times this becomes very frustrating for me but I continue to try to push through.

Today was another land therapy session at PT and we definitely tuckered out my quad sufficiently. We were going to start at the ballet bar in the class room, but there was a class setting up in there so decided that this would have to wait for another day. Instead we went back into the clinic and stood in-front of the mirror with two bands with handles for support (I am not sure if you can visualize that but try). Using these as support- which are not nearly the support of my crutches- I started off doing demi plies in first and second, as well as eleves in first. We also worked on taking a few steps forward as well as backwards with my PT supporting me with a gait belt. I am shaky but getting there. We also worked on passé develope with my right (which standing on the left); this hurts the right but is a great exercise for the left because it forces me to use my external hip muscles while standing. She had me work on a few toe touches with the right while standing on the left and also just stepping from my feet together to being out shoulder width apart. This is much harder for me than it is for a normal person. We finished up the day with some practice walking with one crutch on my left side supporting the right and full weight bearing with the left. My quad and left leg in general were extremely tired today so this was shaky and difficult. Then I did 15 minutes on the NMES as described above and I was free to go for the day.

My hips were feeling stiff and sore, and although it may sound like exactly the wrong thing to do, I decided to go to the Y and hop on the bike for a bit. My right leg fans out because it clunks, gets stuck, and causes more pain than its worth if it bikes with the normal movement pattern; in fact I could not bike with the normal movement pattern on my right if I tried because of its structure.

So that’s it for scheduled PT this week. I will work on things myself and head to the PT clinic sometime between now and Monday’s session to continue to target the balance and strength of my left leg (with as little aggravation to the right as I can manage which is nearly impossible) but other than that my days are going to be pretty low key. After three weeks with Jess and touring around I have no problem sleeping almost all day and night. As I said to my aunt and uncle last night I feel like I have a concussion without the severe headache and dizziness, just the constant want/ need to sleep. Next Friday I have another follow up with my surgeon which I am really looking forward to and I have PT on Monday and Wednesday. Lets hope that the weather gets sunny again and the days don’t seem too long… cause right now they just drag on. So until the next update….

Frustration overrides improvement

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

I have been thinking about how to write todays post since i want to put in updates on PT and my adventures with Jess, and the things are so contradictory I am not sure where to begin or whether or not they belong in the same post. My time with Jess is fun filled and unending laughter where as PT is just a source or frustration. Well, I feel like my time with Jess warrants more than me typing on my phone- I’m away camping with her at the moment an don’t have any Internet but the 3G on my phone- can you imagine we all used to live without Internet and phones ;-) oh those were the days of a true vacation. Look at me I can’t even get away from my blog posts! Well I guess the solution to this is to write about physical therapy for now (since it doesn’t matter whether I’m on my phone or not!)

Physical therapy. Torture hour. I think many patients who have experienced this for a lengthy period of time understand exactly why we refer to it as torture hour. I have been in PT since I was 15 years of age… It’s now almost 7 years later and here I am still in torture hour every week. At the moment I am still working with the new therapist in Vermont where I have been for just about two months. Things are continuing to improve, but I am also getting increasingly frustrated. There is a certain “life principle” at work here, as I like to call it, where the negative no matter how small or great overrides the positive in a certain event in life. As people I think it is much easier to dwell on the negative rather than the positive. The challenge then is to get our minds to divert their attention from the negative and almost overlook it, convincing ourselves that it’s going to get better. Make sense? I am sure there are plenty of events in your life that you can apply this to. At the moment this is the best way to help you see what is occurring with torture hour.

Last week, 8 days ago Jess arrived and I got her up on Friday just two days after she arrived, to leave at 3 am in order to make it to my 830 am PT on time. I drove the 4 plus hours up to therapy and then was worked real hard that morning. Jess even commented (which she herself is definitely an experienced pt goer) that I was worked very hard that morning and she couldn’t believe some of the things that we were working on.

That day I walked in and the first thing my PT asked me to do was stand leaning against a wall, pick my right foot up so I was only on my left and to do single leg squats. You. Are. Kidding. Me. I thought to myself. I was unable to complete these on my own and needed heavy assistance the entire time especially going from where my knee was bent to making it straight. We also worked on my demi pliés (basically mini squats in dance terms) in first (heals together) and second (feet almost shoulder width apart). Along with this we did stepping from first to second and back to first with the majority of my weight bearing work on my left leg. My left exhausts very quickly. She had me run through some other activities as well and then we finished with working on my walking with one crutch on the left side supporting my right.

Since then I have had a therapy session in the pool and another on land. I have definitely been slacking since Jess has been here. In the pool we worked on walking and treading water as well as several weight bearing activities on my left. On land we did several more new activities which my left tolerated but just barely. The endurance of my left is definitely lacking. I still have a lot of strength to gain and endurance to accumulate before my left will be good to go.

The past few sessions my PT has talked to me a lot about my right hip. She said that there is an obvious limp on my right side that is quickly becoming more severe as she now notices it not only on land but also in the water. Its been giving out on more often and the number of times it gets stuck and clunks back into place (causing more pain than it’s already in) is increasing in frequency throughout the day. My PT said she is worried about how much longer that right one is going to hang in and that she can see it in my face every time she sees me; the pain is evident she said you can just see it in you and you are clearly exhausted from it. The right hip does not seem to let you get as far distance wise anymore either she told me. I think it’s incredible she can see all this because it is definitely the way I feel. Just this past wednesday when I was there we talked about how quickly the right is “going down hill” and that we need to keep pushing my left one to get better as much as we can without causing injury to it. That being said, she stated that the left one could definitely handle me going in for surgery on my right come August or September. She said that even though I need supervision to walk on it I will be supervised the entire time in the hospital and in rehab therefore it should not be a problem. I can get about 20-30 feet with supervised walking. It’s going to be a struggle that is for sure, since my right is non weight bearing for a minimum of 8-12 weeks. She said that the majority of my time is going to be spent in a wheel chair and it is going to be a long time before I am able to walk a long distance with even just my crutches. The closer this even gets the more real this all becomes and the more I try to deny the fact that it’s going to be continued struggle.

I see my surgeon again this coming Friday, one week from today actually; so I will see what that brings. Maybe I will have a better idea of a time frame. Even just having a date would help me prepare better and at least give me a day to look forward to.

So although things are getting stronger and my plantar flexion is slowly improving. Walking with one crutch is slowly getting better as well although I still need a lot of assistance/ supervision while I walk; the amount of help I need is slowly getting better. What overrides this is the frustration in the numerous things that I can not do that I keep working very hard to try to do. The struggle to do things even with a lot of assistance. There is very little that I can do without someone helping me. Therefore to do most things without two crutches I would need constant supervision. This makes me angry because for the amount that I work on these things every day I don’t see the amount of improvement that I want. Another way to put this, is for the put I get very little output. Some people would say that the improvement is huge (to the medical personnel working with me it is) but to me it’s minimal. I don’t think that this is being pessimistic about it all ( I still have a positive attitude) this is just how I feel about everything. It’s that principle where the frustration overrides any positive improvement.

For now I’ve got to go… One can only type so much on the phone, and it’s time to have breakfast and get to the beach :)

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The Highs and the Lows

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

Part of being on a hip journey, or any life experience for that matter is experiencing a range of high and low points. When this first started my surgeon said to me time and time again, just be sure that you try to keep the highs not to high and the lows not too low; you don’t want to be riding an emotional roller coaster that is any larger than what you are already going to go through. He certainly knew what he was talking about. It has taken much of the past three years of working with him to learn how to put his advice to use, and unfortunately I am still learning; I have gotten much better as time goes on though.

I believe that I have mentioned this before where you don’t let yourself get too excited about the good things in life, but you also don’t get yourself down too much about the unfortunate occurrences that make life interesting. Basically you want to stay as level headed as possible throughout the rough times that last for an extended duration; my hip story being a prime example of one of those times. In the past two weeks though, I am realizing that I had let my highs and lows out of control. I was encouraged about how physical therapy had been going since I had started in Vermont, who wouldn’t be when they were getting no where for a while. The small improvements that I was making were big in the eyes of myself and those medical personnel around me; encouragement is good, and sometimes I don’t give myself enough but I think in this case I got too hopeful. I was up so high, that when I crashed just two weeks ago (I cant believe its been so long) I ended up falling fast- literally and figuratively- and hitting a very “low” low.

Coming back from my motor vehicle accident has not been easy and being so upset about what happened with the accident, and why it had occurred (me passing out for some reason), in addition to the fact that I was going to be set back a bit in PT has been a challenge to overcome. In trying to find my way through I have taken advantage of any highs in my life, and I have let them shoot me up too high on the emotion scale, which just makes the lows even lower; This yo-yoing effect just gets worse as it goes on.  Therefore I have been working to try to bring the “level headed Em” back to existence, then this week there was a bit of a slip in that attempt.

This is the holter monitor and one of 4 leads from it.

Wednesday, I attended my first land physical therapy session since the accident- up until this time all my sessions had been in the pool. I had been doing some strength work on my own outside to keep what I could but its not quite the same, and I was still sleeping more hours than I was awake each day (this is slowly fading as the days go on). PT was really difficult. We did a re eval for the insurance company going through basic range of motion and strength tests. I have gained a little, which I should be excited about, but again am trying not to get my hopes up too much all at once. Going through the session I felt like we picked up where we left off; which is not necessarily a bad thing, but had the accident not happened as my PT told me, we would have been a few weeks further along. Not to worry though, she assured me, we will gain it back. We did a lot of dance based strength exercises and training on my left leg which are more familiar to me and make PT a little more enjoyable. I get frustrated with the fact that my right turnout is considerably better, and that my knee still hyper extends on that side, but that is a story for another day.

Coming out from PT I was actually expecting a phone call… and it came. This was where my highs once again became out of control. I

This is the cake that I submitted for the contest and now have to recreate!

was informed on Wednesday that I am one of three finalists to appear on the Today Show,  in the Quest for the Best Birthday Cake contest! I could not believe it. I had submitted an entry per the request of my cousin (which had taken some nagging), but I figured what’s the worst that can happen? Its just a submission and the only things that can come of it are good. So I head out to NYC next Wednesday the 27th by train, and go to NBC studios with a recreation of the birthday cake I submitted ready to be assembled by the time I get there. I was (and certainly still am) beyond excited. How could I not let this high get out of control? It is one of the more positive things to happen to me in a while. So pain and dysfunction in the hips… make note… Em is going to NYC next Wednesday and Thursday and you need to cooperate!!

This week I went through a holter monitor Tuesday- Thursday, which was basically a small battery pack running a constant EKG on me for 48 hours and just left a very sticky residue and some red scratched up spots on my skin afterwards. I also had an echocardiogram Thursday afternoon, which took a lengthy period of time, and I will not know results of any of this until later. Looking on the bright side, this should all come in handy as I go to medical school (hopefully) as I will have been through a large amount of medical testing myself and thus have a first hand account of what is feels like. ;)

Next week I am in for quite the roller coaster ride though, as I am in NYC at the Today Show Wednesday and Thursday (definitely a very “high” high) and then I fly back home on Thursday and travel straight from the airport to the hospital for an appointment with my surgeon and neurologist (which promises to be a definite low). I am not being pessimistic about the appointment, but simply speaking from the multiple past experiences that I have had that are just about the same circumstance. Thursday is going to be one of the best, exciting, yet also not fun days of my journey. How I managed to make that possible, I am not so sure, but we will have to wait and see.

You can see how highs and lows should be kept in control, but yet how easily they can spiral into this roller coaster of emotions with highs so elevated you are in the clouds, and lows so low you… well you get my point. My surgeon reminded me (two weeks ago when I saw him on the day of my accident) of another saying that he has told me from the beginning, this is going to be a life experience. He told me at the beginning that this is something that few will go through and have the “pleasure” of experiencing. It is a life event that until it is actually lived, it is difficult to understand. Yet again, he has been right in his statement and only now am I truly starting to appreciate what a life experience this is, as well as how hard it is to keep a level head through all the highs and lows.

Muscles and Swim Buoys

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

Perspective can sometimes be hard to obtain when looking at someone elses situation. It can be hard to understand where they are coming from or what is involved in a certain aspect of their situation. Today I would like to share information that my PT explained to me the other day that should add to your perspective on my recovery and how much I have lost, thus why something very little gains can actually be a lot.

She explained to me that there was a study done on a group of men and women who were trained for the armed forces and had extremely high levels of fitness. They measured their strength and muscle functions along with O2 return and other quantitative data for both voluntary muscles (such as those of  your limbs) as well as those that are involuntary, such as cardiac muscle. After obtaining a detailed set of values, they took the people in the study and put them on bed rest for two weeks with normal nutrition; meaning the main isolated variable is the fact that they are now on bed rest lacking forms of exercise. After just two weeks, they had lost over 50% of their initial capacities in all measures. It then took them many months to recover back to their initial states, some taking up to a 6 months to a year.

My PT went on to explain to me why she told me about this study, saying that not only have I had three years of a drastically different lifestyle that involves little activity, but I have also been on many periods of long extended bed rest that were also preceded by surgery and the disturbance of the muscles. Not to mention the most recent one where many muscles were disrupted from their area of origin. “Think about it” she said to me,  “the time that you have been out is much more than two weeks and not only that but you have the factor of multiple surgical interventions. Therefore, you need to acknowledge the small accomplishments because it is going to take years to get you back to a state that is a fraction of where you were before. The more you draw on what you had previously and how far from that you have fallen the harder this is going to become, because that person seems unattainable.”

It makes a lot of sense, however although I understand it, my brain is having a difficult time actually accepting that this is my circumstance. Maybe this will make more sense with an example. The other day my PT assisted me in getting on a spinning bike with no resistance on it. Just to get it started with no resistance at all was work to my legs. I remember though that I used to be able to bike with a considerable amount of resistance and for a lengthy period of time and with a high number of rotations per minute; this is what my brain tells me I should be able to do.  When I am not even close to performing this bike task at the level my brain remembers, it becomes frustrating and difficult to acknowledge even the ability to increase the resistance just a notch for a few minutes, or the ability to go for 10 minutes at minimal resistance instead of 5. The reality is, that these small improvements are a huge deal at this stage in the game.

My towel (extra long and micro fiber, thus easy to walk with crutches), swimsuit, goggles, and my pink/blue swim buoy (note the size comparison to the other things there.

The question now is, what am I doing to actively assist in getting both my voluntary and involuntary muscles stronger and acting. Part of this is making myself work to a point where I am forced to focus on breathing and gaining a better capacity for using the oxygen that enters my body. To do this, I am starting with something that is gentle on my hips but a lot of work for the rest of my body- Swimming laps. Yup you read that right, I have started swimming laps lately. One thing you may be asking yourself is how do you swim laps, if you have no strength in your legs? Well, the answer is, I don’t use my legs at all to help propel myself forward. I have what is called a swim buoy, which is not very big and it goes between my legs at the level of my thighs. I do not have to work hardly at all to keep it there because of the shape of the device, and it allows my legs to remain afloat without me really working to keep them there. With the swim buoy in position I am able to swim laps using just my arms!

This for me is exciting and has been really helping with getting me out of the stir- crazy mood that I am in. The buoy is not so cumbersome either that it prevents me from doing a flip turn at the end and pushing off to continue my lap. Pushing off the wall is hard as I still can not seem to

Another view of the swim buoy to give you an idea, the larger end goes on the bottom side of the water, the smaller end is on the side of the surface of the water.

get my left foot to kick in, maybe this will be one of those activities that gradually gets it to work, I don’t know. Regardless, I thoroughly have enjoyed swimming without the use of my legs and just using my arms and this is one of the ways that I can start to rebuild some muscle, and cardiovascular endurance.

In other hip news, I was recently down in MA for an alteration to my AFO. It was bothering me, especially when in my sneakers, along the bone of my small toe. I could barely go 15 minutes before it started to be irritated, which as you can imagine can make for a very long day in an AFO. They took my AFO and blew out the side where my small toes sits so that it accommodates it better; since then my AFO has become my best friend as it has helped me immensely in working on a better gait pattern with my left leg. I am just not a fan of the knee high socks quite yet!

I believe many of you have probably heard the general saying, that muscle is lost much faster than it is gained. This is of course lacking the specifics of how this works but for the purposes of my post today it makes a solid point. From the short study I shared with you to my own examples I hope that you have gained a little bit more perspective on how long my recovery has been and will continue to be. As I continue forward, I will continue to try to build upon this understanding with you, though sometimes it is hard to put it down in words.

I have been back and forth quite a bit lately, and this trend continues on Thursday when I head in to see my surgeon. Prior to that though I have  physical therapy tomorrow, on land (the pool was Monday); torture hour commences at 9 am tomorrow morning! After that I hope to get a few laps in at the pool.

 “In essence, if we want to direct our lives, we must take control of our consistent actions. It’s not what we do once in a while that shapes our lives, but what we do consistently.”