22 Days Post Op: 6 Days to go in Rehab

Today was the day that I changed physios.  I'm not overly thrilled about this and I'm not completely convinced that it was my preconceptions that have caused the problem.  I wasn't looking forward to it as I work well with the guy that I was working with up until today.  Today marked a major change and apparently everything I was doing was wrong and apparently if we fix these bad habits now 'there is a good chance you can be normal'.  Bah.  Who says stuff like that?  There was never any doubt in my mind that I am going to be normal.  I despise that word and it doesn't accurately convey my meaning.  There was never any doubt in my head that the outcome would be positive.....  until now.  It annoys me (much stronger language), that yesterday was such a positive day and I was ready to smash it again today.

I understand the philosophy of getting things done the right way the first time, however, there are some times where you need to just figure out a way to do something to cope with life.  I've been doing this for twenty years.  It might not be normal but you know what, I had a good life.  Saying I might end up normal implies that I wasn't.  This might not be how it was meant though it really was a freaking stupid thing to say.  I'll do what I need to do to cope for now and then I will go back to working with my regular awesome physios who will correct me without being condescending, who will actually work with me to not only cope and get through life but achieve the positive outcomes that I am determined to achieve and who will listen to me when times get tough and inspire me to keep going.  I will believe them because I trust their sincerity and their professional skills.  There will be no fake platitudes as they will actually know what my progress has been like and be skilled enough to know what my limits are and help me push through them without making me feel like a failure. (eg setting realistic targets, one step at a time, letting me be involved in my own program and understanding how we need to get where we need to go).  Two of  my best friends, one being my husband, want me to request a change from the new physio and I'm not keen to do so while I'm here.  I know this might seem like I'm going back on my idea of being your own advocate but I don't want to rock the boat when I'm so close to being out of here and being in charge of my life again.  I will be mentally prepared for tomorrow and I won't let it upset me again.  I'm sure that the current physio knows her stuff and her methods work with some people but they don't work with me.  There are only four days of gym left before going home and I can grin and bear it.  I'll try my best and do what I have to do to be the model patient.   If I can wrangle it, one of them might be able to be a handover session.  I'm going to ask about that tomorrow and see what is possible.  I am not a failure and I won't give her the power to make me feel like one.

The big thing we need to cope with is stairs and my home visit on Tuesday.  Frankly it doesn't matter if the heel on the bottom leg lifts a little from the ground to get the top leg onto the stair at this point.  (My quads are strong, I have good balance and am stable so it isn't a falls risk)  I am working on hip flexor strength to lift the leg and it might not be where it needs to be by Tuesday, so what should we do?  Skip the home visit?  Delay going home?  I'd like to swear here but I have refrained from doing so thus far with this blog (at least I think I have), so I won't though I am sure you know full well what I'd like to say here.  28 Days in hospital is enough for me.  I'm out of here.  I'll get in the freaking house any freaking way I can and then once I'm in I'll work at it until I get to where I need to be.

I have so many bad habits from years of compensating for my diseased bone on bone hip joints.  I have already gotten rid of one and am working on the others that appear as I get fatigued.  Apparently it's better to do nothing than something if it is wrong.  I'm not a professional and not qualified to comment about anything but my own experience.  I disagree with that particular professional opinion that this is the case in all situations.  Obviously you don't want to do something the wrong way if it will cause injury or possibly cause stability to be affected thus increasing the risk of a fall but the fact of the matter is I am going to need to compensate to some degree until I heal fully and my strength returns.  For my mental health it is better for me to try something and at least achieve it even if I did 'cheat' this time and work on doing it properly especially if it means that I can actually get inside my house.  I also think it's better for me to be moving even if the range isn't up to what it should be.

Isn't it better for me to at least try to continue rather than give up?  If I had of done that I wouldn't have done any exercises as up until a few days ago I needed freaking assistance to actually get pretty much any of it done.  From the very beginning of my rehab I've asked to give things a go even though I knew I wouldn't be able to do it completely, I just wanted to see how far I could get and how close I was.  When I couldn't quite get there I was getting encouragement and we would work on it and you know what, the next day it was a little bit easier and I could do it a little bit better.  If you beat the will to try out of someone in rehab you aren't going to get good results.  Mentally the patient has to want it and want to be there otherwise what's the point?  

21 Days Post Op: 7 Days to go in Rehab

Wiped out from rehab today.
Had a good day, worked hard and progressed.
Will need to update tomorrow - need nap time.....

20 Days Post Op: 8 Days Left in Rehab

Today the target of going home next Friday has been finalised so the countdown is on.  Obviously this requires a couple of targets to be met.  The big one is the stairs.  Both my Physio and Occupational Therapist agree with me in thinking that this really is a reasonable target that I can meet.  

There have been a couple of positive changes today.  The main one that I noticed is that I didn't require assistance to complete some of the bed exercises which I have been getting a little bit of help with.  It wasn't easy and I wasn't working to my full range, though I was still actually getting somewhere with them which wasn't happening yesterday.  Mostly it was the right leg that I was needing light assistance with for the leg bends where you keep your heel on the bed and for the abduction for the left just to get started off.  I got through them today without assistance which was awesome.  Some of the reps didn't quite look as good as the assisted ones but the milestone is actually being able to do them.  I'm hoping this is an indicator that not only am I getting stronger but that my brain is connecting it all together properly so progression will continue along at a speedy rate.

I have started on little steps today, ones that are about half the size of normal steps so at least I am started on the path towards getting out of this place.  I had two sessions down in the gym today that involved a lot more practice on crutches.  I am getting a little more stable and can already see the difference from when I started yesterday.  I'm still a little way off using them unsupervised.  Unfortunately I change Physio's next week as the person that I have been working with for the last two weeks was actually a locum to replace the person who is actually assigned to me.  It is a bit of a shame as I have a good working relationship with my current Physio and I think that he knows what I am capable of and what to push me to do so that we are seeing results.  (It wasn't his fault that the gym was closed and he wasn't scheduled to work!)  I am sure that the other one is good - it just takes time to get into a routine and build a working relationship with a new person and I don't want that time to detract from the benefit from time that I spend with the Physio.

It looks like I will be going on a home visit with the OT next Tuesday where we will go through everything in the house and see what additional aids I might need to purchase or have installed to assist with me living back at home.  I think that we have an idea of most things that will be required, though there may be some little things that I hadn't considered.  We will need to test things out like getting in and out of the shower, moving around the kitchen and even getting in and out of bed.   It's amazing how many little things that you take for granted and it isn't until you do something like this that you realise the full magnitude of what you need to adjust in your life.  I had wrongly assumed that the limitations that I had before and the things that I had learnt to overcome difficulties would be all of the same things and I would be fine.  It turns out that even though I am reasonably well prepared, there is more than that and I am now aware of what I need and will continue to need for the next month or so as I continue to heal.

19 Days Post Op: On Crutches

Today all of the physios and occupational therapists were back at work so it was a busy day.

The day started of with the cancellation of my home visit with the occupational therapist, which wasn't completely surprising as I commented in a post a couple of days ago.  I haven't started with stairs and I need to get up seven before I can actually get into the house.  I thought she still might have gone to check things out but apparently that is only needed if major changes need to be made.  This started of the cascade of tears, even though I knew I couldn't go and for a little while longer while I explained why I am so upset about the whole thing.

I've always been a fan of keeping someone's expectations low and then over delivering so that they are thrilled by the improved time line.  It doesn't work like that in hospitals.  I will have missed two check out dates on Friday and this makes me feel like failure even though logically I know that the dates were unlikely to be met by any bilateral especially given the holiday period.  (The second one might have been possible if it weren't for all of the public holidays) I was also down because no one could tell me what my interim goals are.  I want to see progress and have something to measure by.

I need to know that something is happening and be involved with my own recovery plan.  This can be the little things that change in my rehab program like adding in side stepping or marching or getting dressed without my husband's assistance or whatever, just so I know what the progression by smaller more achievable goals that I can take pride in what I have accomplished and used it as a means to stay positive and focused on the development path.  I also need to know about what needs to be done at home before I get there.  I need to regain control of my situation and have things to take charge of rather than being so reliant on others to sort things out for me.  I don't like that and I don't think it is good for me.  It makes sense to me and I don't understand why there isn't more patient involvement in the recovery process.  I believe that ownership really is a big part of maximising the returns of the process.  I mean where would I be now without the 'prehab' or without the second gym session each day, both things that I have done or pushed for myself that haven't been requested of me?  Scary to think that I might not even be where I am now.  How many more weeks in here would I be looking at?

In my gym sessions today we started on crutches.  They aren't the easiest things to master, mostly because I am completely uncoordinated.  This has absolutely nothing to do with the surgery.  It usually takes time for my brain to figure out things like this the first time.  I was a little wobbly and I think that I am going to need a fair bit of practice to be confident that I am not going to fall on my face but I am a little more positive about the whole thing than I was yesterday.  I think that because things were starting to drag out so much longer than I thought they would I was starting to get a little afraid of how difficult things would be and maybe that I wasn't strong enough and I would end up injured.  I think this links back to my earlier comments about involvement.  If I know the path, I can deal with it.  When I don't know what the hell is going on and what I'm going to do I end up dwelling on what I can't do and making it a much bigger issue that it probably is.  I'm not sure if I am just a control freak with issues, or whether this is normal in the situation that I'm in now.

I needed a nap after this mornings session and woke up reasonably refreshed.  This makes me happy for the sole reason that I have worked to capacity and had accomplished a lot more today.  I went back down in the afternoon and had another go at it all and am tired again now so hopefully I should sleep well.

The OT came back again this afternoon and went through what she thinks the plan should be to work towards going home.  She's pretty much in tune with what I think it realistic, as in the end of next week, and has started to plan to work with me to achieve that goal.  We will be covering more functional things like actually getting by day today at home without having so much assistance with things like meals and being in an environment that isn't completely accessible.  

I feel like we might actually be getting somewhere now.

18 Days Post Op: Bad Advice

I've had a rant in the past about being your own advocate.  I was on that warpath again this morning after a 2:00am argument with a nurse, who told me to do something that clearly violates the 'Bilateral Hip Precautions' sign that sits on top of my bed.  I could have done what she instructed me to do which some people would I guess but I didn't.  It was bad advice and I wasn't going to take any risks with my new hips.

Basically she wasn't fit enough to assist me to get my feet in and out of bed and was trying to get me to put the stronger right foot under the left to move it off the bed. (I really don't require a great deal of assistance, it's down to gentle guiding as I am holding most of my weight now - at best guess from my best helper, when I'm tired it would be lucky to be a kilo and a half of weight).  What she wanted me to do was in clear violation of the hip precautions as I am not to cross either foot past the mid-line.  I have been given at least a dozen worksheets with pictures with large crosses through them that have people with crossed legs just in case I don't quite understand the concept.  This shouldn't be anything new to this woman as this ward is for rehab and there are always hips being done here.  Maybe there is only one bilateral a year, but even so, it's pretty clear as to what I shouldn't be doing. I said I wasn't allowed to do that and was given a bit of a sigh and at three am, I was silently screaming profanities in my head.  If it hadn't of been the middle of the night and had my brain been in gear I might have been a little more eloquent about the issue than 'I'm not allowed' to at least explain, but in the middle of the night when you've just woken up and you need to pee, reason and alertness usually isn't present.

There is a reason for the precautions - it's to reduce the risk of dislocation.  It's not just because I don't want to do it.  I just don't want to end up back in surgery and starting this whole process again.  I don't think my mental health could handle that.

Getting back into bed I had a minor panic and a 'you've pushed them too close together (my feet)' before we'd even got halfway there.  I received a rather stern lecture about how I should do it so that she didn't have to so so much to assist with my feet in future.  The way I have been doing it is fine with other nurses, wards-men and exactly as I was instructed by the physios but apparently that was too freaking difficult for her and I got told how her way was better because I'm too hard on the nurses. (almost a direct quote - it's better for nurses health if I can do it properly - though I have to wonder why the wardies prefer the physios way if it was physically harder - so I'm not sure what the go is other than she was a cranky ass who was physically unfit for the physical requirements of assisting patients)   Not good for my mental health at the moment to be spoken to like that.  I know that I am unreasonably fragile, but come on, she was unreasonably stupid and mean.  I think that I would have been in better condition than her pre-op which really does make me question how she manages to do the job when there are people in this ward that require more assistance than I do.  I guess she doesn't normally get the hard cases and probably wouldn't have answered the buzzer for me last night if my regular nurse hadn't been on her break.  I didn't realise this though and when I awoke again at 5:45am and needed to get up to go again, I tried to fall back asleep until shift change so I could get someone else to help me out.  When you start to think about needing to go though, it really makes it difficult to get back to sleep.  I lasted about ten minutes, by which stage I thought my bladder might explode and I couldn't possibly wait another half hour, I buzzed again.  It wasn't even as though I could even attempt to do it myself as the rails on the side of the bed were up and you can't put those down when you are actually in the bed.   The nice nurse arrived and I nearly cried in relief.  She assisted me out and commented on how much better I was getting and that I was almost doing it all on my own now.  After getting back in bed, I passed out with relief, feeling a bit better about myself and my  progress again.  I had prided myself on becoming low maintenance to the nurses, it was something that showed how much I had progressed.  I don't need that much assistance anymore, just in and out of bed, teds and meds and these things don't really take too long in comparison to higher dependency patients.   Somedays it seems that the better you get at looking after yourself the more you get shafted (it's not just the gym, its now the grumbles at requiring one assist - even though my chart still says two assist).


The whole situation highlights once again how you need to understand what is happening to you and what treatment you require to ensure that the right processes are followed.  Speak up if you think that something is wrong.  People do make mistakes, it isn't always ignorance, stupidity or laziness where errors occur.  If you know what should be going on around you there is an extra person there to pick up an error before it can occur.  Disaster can easily be averted if you know yourself and your treatment and stick up for yourself.

I should note that on the whole, the nursing staff are excellent.  There have been a couple of moments like this with one or two that really change the whole experience.  It's a shame that poor organisation and a few people really unsuited to the job taint a group of truly extraordinary people.

17 Days Post Op: Where's my Rehab?

The gym was open today with one physio, though apparently I don't get to be on the list because I have advanced enough that I can do my exercises on the ward.  I am quite disappointed that I miss out on the opportunity to advance because I have been working hard and have been motivated to do so without supervision.  I still require assistance to do some of the exercises and this is left to my husband.    There is also the matter of correcting and advancing.  This isn't something that I can do with the help of my husband.  We need the professionals to help out.  This is why I am here right?  If I am not getting the help I need, how am I going to get out of here?

I have to wonder what would happen if it wasn't possible for my husband to be here so much to help out.  Would I receive a higher standard of care or would I still be left to my own devices to figure it out?  I don't know which it would be but either way I'm not very impressed.  I understand that staffing and services are reduced on public holidays but I think it is a little odd that a rehab ward can't provide rehab for all of its patients for a four day period.  My doctor seemed surprised that I wasn't scheduled for the gym today, though I'm not sure this will go anywhere.  I'm not sure what good it will do to talk to him further tomorrow about it as there won't be any physios on at all then until Wednesday.  The regular physio that I have been working with that is on leave had expected me to be assessed in his absence and the exercises added to.  This wasn't the only indicator today that the wheels have fallen off over the holiday period and nobody really knows what to do about it.  The best I can do in the meantime is continue to do the set exercises and hope that I've at least built up a little more endurance that will be noticeable when I get back into the gym on Wednesday.

Wednesday will probably not be a great day for me emotionally.  I will try to stay positive and not let it get to me.  If I am aware that I might be a little out of sorts and why, I think I will be in a better place to deal with it and get on with what I need to do here.  The reason will be that I was supposed to be up to going with the Occupational Therapist on a home visit in preparation for going home on Friday.  The home visit will still happen, I just won't be able to go.  It's also highly unlikely that I'll be going home either.  Then we roll into yet another long weekend, meaning the gym is unlikely to be open next Monday pushing back any hope of going home to much later in the week.

Logically I understand that this is where I need to be right now as I really couldn't cope at home just yet.  The absolute minimum that I need to achieve is to be able to step over the step into the shower and be able to get my feet in and out of bed.  These are the two things that I really can't go without.  With patient transport, the front stairs wouldn't be an issue though realistically I need to be able to get in and out of the house.  I just need to keep working and eventually I will be home and this will soon be a distant memory.

16 Days Post Op: Happy Easter

Today I had REAL food for the first time in over two weeks.  My lovely husband made real Spaghetti Bolognese and brought it in for lunch today which was so much better than anything I have eaten in over two weeks.  This comparison isn't really fair as his spaghetti is awesome compared with other real food and not having the unfair comparison made to something that really isn't food.  I was also brought in home made apricot slice (again awesome) from a friend and left overs from my brother's bbq last night from my mum.  The fridge is full and I might be free not to suffer from hospital food for at least tomorrow.

I don't think that hospitals are good places to get well.  The environment needs to be more like a resort or spa retreat where food is highly nutritious and tasty and the appropriate combination of activity and restful sleep can be maintained.  I know this might cause further overcrowding when people don't want to go home though I really do think that you might be able to kick some people out a bit sooner as they improve a lot more quickly.  Positive people heal quicker than depressed people, right?  Well, the food would be enough to depress anyone after more than a couple of days.  Pair that with the interrupted sleep and dry air conditioning and surely that isn't a really good recipe for recovery?

To overcome the disadvantages of being here, I need to find things that I can do that will keep my mood  happy and positive about my progress.  First off, I'm going to be starting with real food with real vitamins and minerals and we are going to go outside in the sun and get me some vitamin D.

15 Days Post Op: Mini Meltdown

Since I wrote yesterday, I've been a bit down.  It's not as bad as it was on a few of the days in the 'missing week' though that period of time was intensified due to low haemoglobin and adverse drug reactions and that isn't a reason to disregard it anymore.  I have to take ownership of how I feel this time and nothing is going to be a quick fix.  I guess I just have to think about what it is that is actually the issue and work out what I can do to either fix it or get over it.  I am probably being a little hard on myself but that wouldn't be completely out of character.  I had high expectations pre-op which were probably a little stupid.  I don't necessarily think that I was naive enough to think it would be easy.  I just thought it would be easier than what it actually is.

I've had a bit of a think about why last night and today have been more difficult emotionally than normal and I have a couple of ideas.  I'd say a big part of the reason is that the rehab gym is pretty much closed for the duration of the public holidays with only one session on this morning.  I seem to find it more difficult to keep it together without the external validation from the Physios who are adding things to my program as I am progressing.   (Just telling my I'm doing great doesn't work - it sounds just like something that is said to make me feel better with no underlying truth - I need to see the progress and have someone else see enough of it to professionally say that I am ready to move forward.)  Another part is frustration setting in as I struggle to do the most simple of tasks like get my own feet out of bed without assistance (which I haven't managed to do yet).  Being in hospital is isolating as well.  Normally I have a choice as to whether I want to be social or hibernate and this isn't really a choice that I have right now and I don't have the interaction that I normally do with people I know and I'm struggling a little with this too.  It could also have a little to do with the change in general routine from being a night person to being woken at six in the morning every day.  Or maybe even partly the food which I am pretty much sick of especially after so many weeks pre-op eating a healthy diet full of fresh food.  Or even a little bit of worry about how much longer it is going to be before I can work again and have the income coming in, or how long it will be before I no longer rely so much on my husband to help me so that he can go back to work.

Yesterday I was on my own at the bar outside my hospital room running through the exercises myself while my husband watched on to make sure that I didn't fall over or do anything stupid like that.  I'll need to do this again this afternoon as well since the gym was only open this morning.  I'm not sure there is enough in my ward program to progress while the physios are away.  I'll have to increase the duration and repetitions and hope that this helps.

I didn't really feel any progress today and have started to wonder just how long I might be stuck in this place before any sense of normality returns to my world and I can at least be at home.  I hadn't planned on being here this long and had expected to be at home today based on the information that I was given pre-operatively.  The estimate of seven to ten days that is typical for one hip has been blown out of the water.  I had in my head that it would likely be two weeks though I hadn't considered that I might be looking at three or more.  Even when I wrote an email to one of the businesses that I do some contracting work for telling them that I would need the backup to stay in place for another couple of weeks, I still didn't really consider that I might actually be in here for a month.

Last night it sank in.  If I'm not starting on crutches yet and can't lift my feet more than an inch or so from the ground I'm not likely to make the end of next week.  I'll keep working on it and maybe we will see some leaps and bounds that aren't expected, though I don't want to get my heart set on it especially when

I feel a bit low still today about the whole thing.  I miss my life, even as it was with the daily arthritis pain. I know that I couldn't have gone on indefinitely like that and logically I know that this really is the only decision that could be made and now really was the only time to do it, but that doesn't help at the moment.  It's probably just a bit all too much at the moment and hopefully it is a phase that I can kick myself out of and get on with it.  I do know that at some point in the near future I will be able to look back and the gains that I have had will have made this all worthwhile.  I just want to be closer to that day and further away from this one.  In the meantime, I guess I just have to keep faking it until I make it.

Today was better than yesterday.
Tomorrow will be better than today.
I will be home soon.
This process will be a distant memory soon.
Life will be better once I get stronger.

14 Days Post Op: Good Friday

Public Holidays mean that the rehab gym is closed.  I still have exercises to do, though it is a little more difficult without some of the equipment.  I have four days of this to work through and hope that the schedule that I am on sees at least some improvements.  Up until now I have seen a change every day and I hope to continue to see these things happen.  I'm a little worried that it won't run as smoothly and as quickly while the physios are away.

The big improvement today was being able to shower and dress independently.  Thankfully I have had my husband to assist me with this, so it hasn't been as much of a big deal as it could have been. (I'm not particularly happy with the idea of someone other than my husband help me with this.   Hopefully by being able to do this myself now, I can be a little more independent and put less pressure on him to be here first thing in the morning to assist with the getting ready process.

Between being out of bed at 7:30am and getting ready and sitting out of bed until my husband arrived around eleven, I was pretty much wiped out for a while.  It sounds strange but sitting out of bed requires significantly more energy than sitting up in bed.  I'm not quite sure why.  I had a bit of a sit back in bed and took advantage of my husband being available to give my feet and calves a bit of a massage with some moisturising cream.  It is ridiculously dry inside here and my skin is peeling.  It's truly disgusting.  It might also be some of the cleansers and tapes that have been used over the past couple of weeks that have assisted in this process as I do have quite sensitive skin.  I probably should have started this moisturising process a lot earlier to prevent this, however, it wasn't something that I'd really thought about happening.  I don't think that the compression socks are helping much with the skin they cover either.

After lunch, I actually went outside for the first time in a week.  It was a bit strange to be out in the open.  We didn't go too far, just out of the front door of the building.  I went in a wheelchair as I'm not quite up to that walk yet especially since there isn't any seats downstairs that are the right height for me to sit on while I've still got hip precautions.  I'm not sure how people do this when they are out of hospital but haven't yet had the precautions lifted.  I don't know too many places that actually accommodate for the higher chairs and toilet seats that are required.  I guess by the time I get home, I'll still want to be in going through my own physio program, working on the strength and ability to hopefully ditch the crutches at six weeks so there won't be a great deal of time to be looking at spending too much time out and about.

After getting back to my room from downstairs, I got stuck into the first set of exercises for the day.  This pretty much tired me out again and put me back into bed for a bit of a rest a chance to catchup with a friend that came to visit and to post for today.  I am still planning to do another set today to hopefully replicate the level of activity that I have been doing in the gym for the past few days.  This might wait until I've had a short siesta though :)

13 Days Post Op: Surgical Dressings Removed

This morning the rehab doctor decided it was time to remove my surgical dressings as I am healing well. I have some photographs though I'm not yet sure that I particularly want to show that much of my upper thigh and bottom to the world :). I'll think on that and decide another time. The wounds are a little longer than I estimated, mostly because I really couldn't see them. They would be approximately 12 inches long. They don't hurt, I just feel some pulling when I move which is pretty normal. There are little pieces of tape across the wound that sit side by side down the length that will apparently just fall off when they are ready. The tape might even be part of what the pulling sensation is.

We also discussed going home. The target for now is next Friday. I still have a lot of work to do and the doctor seems confident that it is a reasonable goal. There will be an assessment of this on Wednesday after all of the public holidays to see that we are on target. The rehab gym is closed a lot in that time, so I am hoping that there will be enough Physios for me to get the assistance that I need to meet the progression targets in the next five days. Each day my routine increases, I just hope it's enough!

12 Days Post Op: Progressing Well

I am progressing reasonably rapidly at the moment.   I still require some assistance to survive the day, though the amount of effort required from the 'assistant' is reducing as I am starting to be able to use more of my own strength.  I am still a little way off being a superstar of the rehab process but I think I at least deserve a gold star for effort!

The main area where help is required is to get in and out of bed.  My legs are still too heavy to move around from a laying ore reclined position in bed around to the side of the bed without a little help.  It still astounds me as to how much weakness that there actually is.  I understand the concept that I was cut open, bone sawed off, extra pieces put in and all sewn back together again, however, I just can't seem to grasp how this makes all the muscles go to sleep.  I understand that muscles will waste if they aren't used but still it hasn't been that long since they were used properly.  I guess that I have underestimated the amount of activity that I actually did do in a regular day even if there were a few lazy ones back to back sometimes.

It really is a vicious circle that needs to be broken out of as quickly as possible as when you are weak, activity is difficult, slow and you do less of it.  The less you do, the less you can do.  As an example, Pre-surgery simple activities like going to the bathroom aren't a planned and executed event, you just go and think nothing of it.  Post-surgery they are. In addition, middle of the night trips become a major exercise so returning to sleep isn't particularly easy.

I don't think that I started down that path of doing less and less, which is extremely positive.  I was lucky that even though I was ill for the first week post-op, I had the encouragement and assistance that I required to get started on the path to recovery.  (Even when I was high on oxycontin the first time I had it ever and was freaking out and throwing up, I still tried something.)  Each day I get stronger and have both more ability and more endurance to complete the exercises and add new ones in.  I'm hoping that this continues for a while yet as I still have a number of old skills to remaster.

The big one is walking.  I am currently using a rollator/gutter frame that looks like this to walk.  I am using significantly less pressure through my arms and walking is slowly becoming more fluid.  It is more difficult to walk in the rehab gym on the bars, though this too is getting easier as time passes.  The bars are a prelude to crutches which I will need to be an expert on before I am allowed to go home.  My left side is still recovering from a bruised nerve and is weaker than my right side.  There may have also been a pre-existing weakness in this side that I wasn't aware of as it was the side that had the most joint damage.  Thankfully I was still able to have the BMHR on the left and it didn't have to be changed to a total hip.  Surgeon's skill or luck or likely a lot of the former and a little of the latter, I don't know, I am just grateful as it will make revision a little easier.  As I walk without pressure through the arms, I fall into the left side as the hip stabilisers aren't there yet.  I have added in other exercises to start to encourage these guys to fire and work a bit harder.  The residual numbness in the left side is almost gone, so hopefully we will soon see strength returning a little quicker than it has on this side so far.

Sleep is still difficult and is likely to continue to be for a little while yet.  I have started to get into a little bit of a routine in which I am able to get about 3 hours before waking to get up and move around for a bit and then back to sleep again a half hour later for another 3 hour stretch if I am lucky.  There is always further little sleep time depending on waking times, though this can be as little as an hour.  I manage a nap in the afternoons before the afternoon rehab session or in the early evening before my 10pm meds.

I am spending a higher than normal amount in bed and suffering muscle tightness in my mid and lower back.  The periodic muscle pain is pretty much all there is as the actual hips themselves are pretty much pain free.  There is still a lot of swelling left and ice is one of my best friends.  As I understand it, this is pretty normal and will continue to be this way right throughout the rehabilitation process.

11 Days Post Op

I'm starting to get settled into a rehab routine. I'm down there in the mornings for a hour or so and then have a slightly shorter afternoon session after heading back to my room for lunch and a rest. I've added exercises in each day so there is obvious improvement which is a positive sign that things are on track. I am pretty worn out after today's efforts!

I started the day a little fatigued as it is difficult to sleep without rolling to one side and there was soreness in my legs from yesterday's efforts. I discussed pain management with the ward doctor and rehab doctor today and have decided to hold out a bit longer as is as I'm not really keen to take the jump to a morphine based drug after my run ins with his friends oxycontin and endone. Not being a doctor, what I don't understand is how ibruprofen is considered a 'strong' anti-inflammatory. I would have thought that even the Voltaren that I was on was more powerful than that. Maybe it isn't and it's just different -I don't know. It's hard to tell right now if the other joints are acting up due to rehab and healing for the hips or whether they are doing this on their own. It's most likely the former. Either way it's a pain (pun intended) and one that hopefully won't impede my progress. If it comes to that, I'll reconsider the drugs as I want to be recovering as quickly as it is possible for me.

After rehab, meals, showering and other daily essentials (naps in this category), there isn't a great deal of time for much else so the days go reasonably quickly. One day blends into the next with energy levels depleted and little desire to do much else than rest and prepare for the coming day with anticipation of what new things that I might be able to do as the new day dawns.

Waiting for PT

10 Days Post Op

My new regular activity is waiting for the Physio. In the mornings we go for an hour and the schedule isn't completely fixed, you just have to wait your turn. Patience isn't exactly my strong suit. To pass some time I thought I'd play around with a blogger app so you'll need to forgive iPhone typos and odd corrections.

I woke up early this morning with the fire alarm going off followed by a "don't panic we are sorting it out". There wasn't major panic but I did wonder how they would get us all of here if they had to given that you don't stay at the rehab ward for no reason. The pre-six alarm means that there are two nurses to deal with 14 patients on this floor so it could be interesting. I'm sure that there would be documented emergency procedures and people would come from other parts of the hospital. Curious though. Firetruck was here in what seemed like under a minute so I guess that factors into their emergency planning. It was nothing and we were advised of that much about five minutes later. It was probably just some idiot smoking in the toilets or something.

Apparently someone is coming to get me so will continue a bit later on today.

Human Again

Nine days post-op

Today is the first day that I really feel human again.  I had an early start this morning waking at 6am, then had the usual hospital interruptions each half hour as I tried to doze back to sleep to have a bit of a sleep in. I started off rough, though through the span of time between 6 and 9:30 the little naps seem to have done the trick.  I've just started to get a little weary (it's 2:30pm) which isn't too bad at all really considering that this is the first day I've really been awake and alert for five hours straight.  In that time I also went for a walk and had a small physio session, gotten up two other times, showered and had lunch which are activities that usually require nap time after them.  It looks like improvements are starting to come more quickly, so I hope that I'm on that upward swing with the strength in my legs as well.

Best of all, the depression waves seem to be staying away today.  I am still a little all over the place emotionally and this may well just be hormonal (yes - freaking unlucky I say), though a small amount of depression when things aren't working the way that they are supposed to would have to be quite normal I should think add the hormones in and hey presto, a recipe for a crazy woman.

The physios have been a really positive influence on my mood.  I wasn't expecting that.  Not that I have anything against physios - I love mine that I have been seeing for years, I was just wary about the hospital system and just how much support would be provided to me.  I think the biggest issue I've had so far is my own expectations and how these were influenced pre-operatively.  I really thought by day 9, I'd be learning crutches, not still how to get out of bed with one assist (rather than the two I was using yesterday or when tired and ready for meds at 6 this morning).  There is absolutely no way on earth that I was only going to be in here 7 - 10 days.  Maybe that was always just the rehab component and I got something wrong, but I don't know.  I'd over estimated it to two weeks, though in reality it will be three weeks or just over.

I'm having some visitors for a little while this afternoon and then hopefully I'll get a restful night sleep tonight.  I think that really is the big thing that is missing and causing most of the issues now - lack of good sleep.  The big issue is how difficult it is to move to get comfortable and not being able to sleep on my side which is how I have slept for the last twenty years.  Apparently the restrictions will reduce at some point, hopefully once I can actually get into that position as I'm not quite sure how to stop myself doing that in my sleep.  It's pretty easy right now as there isn't any way to get into that position without rolling assistance and I'm sure someone will tell me once it becomes a concern.

8 Days Post Op

There is lots to fill in, though I'm still not up to spending much more than a few minutes at a time focused on any one thing yet so I'll have to come back a bit later on to fill in the gaps of what has happened in the last week.

I arrived in the rehab ward yesterday afternoon, which was a few days behind schedule.  I was held up in the ortho ward in the main section of the hospital that deals with people in a more acute state of illness.  Basically I had some problems getting on the right types of meds and also required three units of blood over the space of a couple days.

It looks like I am going to be in this ward for about two weeks depending on my progress as there are some clear goals that must be achieved before I can go home.  Specifically I need to be able to get out of bed on my own, upgrade from the rollator to crutches to assist with walking and be able to get upstairs.  I'm not sure if the first one or the last one seems like a harder goal to achieve.

Overall, pain levels are a lot lower than what I was expecting.  I didn't think that I would be fine with a brufen and panadeine forte cocktail, though that's what I am able to take without hallucinating (hard drugs were evil - more about that another time) and I seem to be doing ok in that regard.  What is killing me is the weakness.  I didn't expect that all these muscles that had been worked hard in the months leading up would suddenly be so tired.

Game Day

The countdown is over and we are here checked in to Mater Private in the 'Welcome Lounge' which seems to be the private hospital version of a waiting room.  Pretty cool really.  Internet access, tv, proper lounges, no overcrowding.  You can even borrow an ipod stocked with movies and music.   It's a little like an airport lounge just without the beer.

I am remarkably calm.  The day has started out well.  We got up at six to get the pre-op breakfast and coffee in before seven (at Two Cups) and then went home for a nap until about 9:30.  I didn't really sleep but it was nice to curl up under the covers (on my side - which will be out for a little while after today) while it rains away outside.  We were up, showered and out by about 10:15 and are now checked in and waiting.  I'm not scheduled until 2pm this afternoon and before then I will be meeting with the nurse, anaesthesiologist and the surgeon.  I think they might just keep you in here to make sure you don't eat.

Hahahaha...  I was just commenting (ok bitching) that it wasn't fair that someone just brought coffee in here. I thought it was food and drink free.  Apparently it is, it didn't take too long for the nurse to descend and tell her to get out as you can't eat and drink in here.

Not much more to tell at the moment.  Will post again when I am out of surgery and allowed back online. I go to ICU tonight so not likely to be allowed to have access until tomorrow - probably going to be pretty druggy until tomorrow anyway so I shouldn't suffer too much with communication withdrawals!

About two hours to go!

Game Day Eve

Almost ready to go.  I have less than 12 eating hours left and I really should get some sleep for some of those.  Today wasn't quite as relaxed as yesterday though that is probably more psychological than actually being too busy for the day.  It may also have a little to do with the 7am phone call from the hospital this morning checking the spelling of my name.  (It was a little more than this - but not much!)  I haven't quite figured out the urgency of this as I'm sure they will have plenty of time tomorrow after I arrive and before I go in for me to check all of my paperwork.  I was supposed to start the day with sleep until about 8:45 which is the absolute latest that I figured out that I could get up, have breakfast, shower and still be at Physio on time.  I got back to sleep not too long before the alarm went off.  Missing almost two hours of sleep isn't nice.  I didn't quite make it on time but I wasn't too late :)

I had two appointments today at Physio.  One to get all my muscles and tissue ready for tomorrow and one to go through everything that I need to know and take range measurements to compare to.  I really wanted baseline measurements to compare to after and I wasn't sure that the hospital physio would look after this.  I know it's going to be better but I want to know just how much better as it well could be a good tool to get through any low points that I have when the rehab isn't going as quickly as I want it to.

I thought I was done with work, though there were few things that came in today that I had to look at.  Some were passed my way which really didn't have to.  I guess its probably a bit easier to focus on things like this at the moment than actually doing the final processing of tomorrow.  From a logical point of view, it will all be fine, everything is organised, there isn't anything to worry about but I can help but feel a little anxious.  At least I'm done now and don't have to deal with any of it for at least three weeks.  After that, I'll see how I am and if I want to take some of it back on that I can do from home.

Not sure I'll get a chance to post tomorrow.  Maybe when we are at the welcome lounge waiting for all the final prep to be done before they take me in at around 2pm.

Wish me luck :)  If I'm not online tomorrow, I'll have a lot to share in a few days when I'm out of ICU.

Two days to go

I woke up sore and tired again this morning after a restless night.   I think that it may well be a conspiracy to take you off medication before an op like this.  Maybe it has nothing to do with blood thinning properties, more that they want you to remember how bad it can possibly get before they put you in and fix it up.  Kind of like under promising and over delivering.

At least I woke up mentally positive.  There are two days to go and then the physical stuff will at least be on the mend, permanently and I'll have much better pain management meds too :)  A little nervous about how much I might need them but overall positive.  I'm hoping that the visible improvements that I will see and knowing that there is an actual end date for the surgical pain will be enough to help overcome the pain hurdles.  I've been told that you shouldn't be a hero with pain meds and don't let it get to the point where you can't handle it anymore as it takes time then to get it under control.  It's very different from the 'tough it out' attitude that many of us learn and live with.  The other tip that I got was to use pain meds about twenty minutes before the physio arrives.

I had hydro this morning and that helped loosen things up a bit and I felt a bit better after that.  It was the last session before surgery and was a little bit slower than what we were doing last week.  I'm generally just a little bit slower at the moment.  Thankfully there isn't really a need to speed it up - so it isn't too much of an issue.  Not sure that I could have handled another full work day today so it's just as well that I finished things yesterday.   Being finished and not completely up to my regular activities on Wednesday, I had changed the hydro until today from Monday and am skipping the last pilates slot as I really didn't think I'd be up to it today.  Unfortunately I was right, though at least I was prepared and got to make the most of the time and feel better for it.

Instead of pilates, I went visiting and took cake with me.  It's nice to be free to do things like that when the mood strikes you.  I got a chocolate cake from the bakery down the street that I haven't been before and it was truly awesome.  I haven't had a huge amount of sugar lately so the sugar rush was a little weird but also awesome.  (I must admit after my long haul work day yesterday I did have a Coca Cola in a glass bottle which was freaking amazing - though I think that it may well have unlocked the sweet tooth as I also had a little hallow easter egg tonight too which hubby brought back with him from Melbourne - it was awesome too.  There are still five left which I am trying to stay away from so I can have some later but they looooook at me saying eat meeeeee!  We did have lots of veges for dinner and I'll need to make sure I eat lots of good nutrients tomorrow to prepare for fast healing and healthy red blood but chocolate today is all good since I've been getting all the good nutrients for a while now when I started the prep about a few weeks before the blog :)

The day didn't step up a notch at all.  It stayed at the same cruisey pace and culminated in an afternoon nap which was awesome.  Think I managed to be completely out for about an hour and a half which is probably a longer stretch than I managed all night last night so I was pretty happy with that.

The evening was pretty low stress too.  Visit from my sister and her fiance and I got presents :)  Not sure what is in there, they are special ones marked with different times during my hospital visit to keep me occupied .  Very sweet and very cool (and oddly heavy so I am quite curious) :)  I'll keep you posted on that one.

The big decision of the day is whether or not to upgrade from my beloved kobo to the kindle for my hospital reading.  The reason that I am seriously considering it is the fact that the books that I want to read while I'm recovering are twice the price in the format for the kobo than the kindle and the kindle has access to more books and it has the wireless and 3G access so doesn't need to connect to a computer to get new books to read.  The new kobo does the wireless thing (but not 3G so probably just as useless as not having it in hospital) so it really comes down to the cost of books.  With the Aussie dollar as strong as it is at the moment it's even better for me as a consumer.  (Apparently its not that great for our economy as predictions have us getting to $1.10 USD, though there is always something that isn't good for our economy, mostly lately it has been natural disasters but I digress)  I do have some books to read while I make the final decision on this one.

Pretty much ready to attempt sleep again.  Hopefully I'm exhausted enough to just pass out regardless if I'm comfortable or not.  Wish me luck :)

[edit:  The kindle is on its way! 7 April, 2011]

Spilled Milk

There is no use crying over it, right?

Even if there is coffee in the milk?

Probably not.

But that's where I was at this morning when I managed just that when I arrived at Physio today (all over towels and pillows....  sorry!)

Now, it was good coffee, but probably not quite good enough for a cry, it wasn't like the last cup of coffee that I would ever drink again and it really wasn't the problem.  The day just didn't start off well.  I woke up tired and sore having not been able to sleep that well.  Panadol Osteo really doesn't cut it to replace the anti-inflamatories that I was on until last Friday.   This is probably the longest I've ever gone without something stronger and sleep is hard to come by at the moment.  I think that naps may be in order when I feel that I might actually be able to sleep for a little while.  There were a few other little things that managed to fray the nerves before I actually got to the point where the coffee was a really big issue but even so, really not a proportionate emotional response.  It's probably just as well I was somewhere where people know me well, as it really was quite an episode, one that I really wouldn't want to have out in the real public.

The day turned around and I got over the weepies and felt a lot better after an hour of Physio and another cup of coffee.

I caught up with an old friend for that second cup of coffee and got a chance for a bit of a sit down and breather to keep the physio calm and relaxed mood going on.  The pain subsided for a bit and I got a chance to get stuck into the last few work tasks so that I can handover to the person taking over.  I pushed through til about 10:30 tonight to get everything done so I won't have to work again before the op.  I finished up about the time that my husband arrived back home after being away for a while.  He wasn't definitely coming home today as he was still in exile but after my little episode this morning.  

I need nap time and relax time now that my husband is home and we are this close to game day.

Post Pre-Op Appointment

All went well with the pre-op appointment so I can relax a bit now.  Maybe I should have a nap this afternoon :)

Some of the questions that I had left had been answered and I have been given reassurance that I am definitely booked in for bilateral, I will be going to ICU for at least one night post surgery and all is good.  I have had my pre-op blood work done (results still to come in though there shouldn't be any issues based on the blood work I had done about three weeks ago) and had an ECG which apparently looks normal.

I also filled out some surveys relating to pain and mobility and signed a consent form for a tiny little bit of my tissue near the bone to be taken for research.  I asked what happens to the bone that they cut out too and it gets sent off somewhere to maybe be used for something too.

Side Note:  Speaking of research, I have recently been involved as a participant in the Motherhood Choices Survey being run by the University of Western Sydney to develop a decision aid to assist women with rheumatoid arthritis aged 20 - 45 who are considering having children.  If you've come here and meet that criteria, please consider participating as they are still looking for people.  I'm not sure how they will collate the information collected though I hope that it is the start of further research into issues affecting people with arthritis and result in the development of resources, knowledge and communities.

Early for Pre-op Appointment

I am in the Fourth Floor Surgery at Mater Private clinic waiting for the nurse to finish with her previous patient so that I can have my pre-op appointment.  I have my list of questions, though am still a little nervous as I'm really not sure what the answers will be (though I've done heaps of research I should have a fair idea - just not exact).  My big questions relate to getting bumped.  There shouldn't be any reason why I would get bumped, though there is still that fear that I might be.  I'm ready now and just want to get it over and done with.  I may change my mind in the few hours before or maybe as I'm trying to get to sleep the night before and have a few moments of uncertainty but I am sure that I won't cancel now.  I've been three days without meds as well as spent a lot of time prepping so I can't let that all go to waste.  I've still got twenty minutes to go so I might catch up on some reading on the discussion boards.

Take Charge

I came across this article that was posted on the Arthritis Queensland twitter account:
Health system failing people with arthritis

The article talks about people suffering with arthritis due to the condition not being diagnosed in a timely manner and consequently the patient not being treated appropriately.  The full report that the article references is located here.

Whilst I understand how this happens, people need to realise that they need to be their own advocates and if they aren't happy with a brush off or the answer that they have been given they are entitled to seek a second opinion and a third, a fourth or however many it takes to get an answer.

Doctors are human too and can't possibly know everything about everything.  If you don't like to question your doctor, you don't have to.  Find another one.  You don't even have to tell the doctor that you are going to get another opinion.  They don't need to know.  If you go to a doctor that you don't gel with (or flat out hate which has actually happened to me once), just don't go back, no explanation is required, chances are they won't even follow up with you to ask why you didn't come back.  I have tried out lots of doctors of all kinds and the ones I never went back to never called me to find out why I didn't go back.

If your GP suggests that it might be arthritis and sends you off to a rheumatologist, you don't even have to settle for the first one that you see.  Get information, ask other health professionals, talk to the Arthritis foundation and see if they have any information days coming up (like this one next Saturday in Brisbane).  Find someone that you think you can work with, someone that you can trust, someone with whom you can have open discussion with.

This is the information age.  There is a wealth of information out there. Be educated.  Understand what quality information is and don't assume that if it is published that it is true.  I'm not suggesting diagnosis by Google but be aware and understand the process, the tests, the diagnosis, the medication and self management so that you can live the best possible life that you can.

Husband in Exile

My husband was supposed to come home from Melbourne today but I didn't let him (at some level his exile is self imposed as he does share the sentiment that it is a good idea - neither of us have to like the good idea - but unfortunately it is).  He has germs.  Somehow he has managed to catch a cold and is busy resting and hopefully kicking it in the next 24 hours so he can actually come home.  

I sound like a completely crazy woman.  I very well may be completely crazy woman - not just 'sounding like one' but I do need to tell a story that backs me up.  A friend of a friend was due to have surgery on his knees last week (I don't know the guy - this is just a story that I have heard second hand) and he got food poisoning two days before and he got bumped!! Poor guy was in public and has been bumped for a year!

Ok, that won't happen to me in private - a bump might only be a month but even so, I'm not sure my remaining sanity could survive a month delay.  More accurately I don't think that the sanity of my husband or close friends could survive.

Last day for arthritis meds

Today is the last day that I am allowed to take my arthritis meds.  At the moment I am just on the anti-inflammatories, Voltaren (Diclofenac).  I have been on these for over twenty years now.  Throughout that period I have been prescribed other drugs in addition to, or to try instead.  When I've tried other things, there hasn't been any great success and management has primarily been with the Voltaren and Prednisone.  I don't recall everything that I was trialled on when I was a child as other things didn't last very long (I'll go through what I can remember another time).  

Side Note:  Over the last decade, I've never really needed anything other than the Voltaren.  Disease modifying drugs aren't suitable for me, the pain comes from the damage that was caused in the early days and a slow degradation as the bone grinds on the bone and the associated inflammation caused by this.  (My CRP and ESR are on the high limit of normal - which are one of the diagnostic tools used to indicate that it is still something alot more than that.  In the old days - there was no such thing as single digits - I really should try to get a hold of my children's hospital records to document all of that).  Though I have damage in other joints (fingers, ankles, knees, tmj and probably shoulders and elbows but they haven't been xray'd so I don't really know), none of the rest of them really give me too much difficulty.  There are range limitations, though no pain.

Back on track:  The reason that anti-inflammatories need to be stopped a week out is that they can act as a blood thinner and result in excessive bleeding (which is something that you definitely don't want during surgery.)  I am allowed to take Panadol Osteo which is going to be *fun*.  I've tried this before when I had a minor procedure last September, and it was only three days then and that really was enough for me.  So it's not likely to be a fun week but it should see the end of needing meds to manage pain (well once the surgical pain heals).

Seven sleeps to go.

Pre-admission phone call from Mater Private

I just received a phone call from a lovely nurse at Mater Private in relation to my 'check in' next week to run through the process of what is going to happen next week.  I am the last surgery of the day and need to be in at reception at 11am.  I will then be taken to a welcome lounge where the anaesthetist and a theatre nurse will speak to me.  When they are ready for me, I will get changed and off I will go.  The afterwards process was also discussed.  I'll get more detail from Dr Journeaux's nurse on Monday afternoon about this.  I may go into recovery and then to a ward, or to ICU depending on what risk they assess me to be at the end of the operation.  I was expecting ICU based on my last appointment with the doctor talking about what happens.  ICU is apparently bright and loud and not as nice as a regular room but you have one on one nursing.  I guess I'll leave it up to the experts to decide where I should go.  If I am in ICU, I shouldn't panic if I wake up with a tube down my throat and shouldn't try to speak because I won't be able to.  Apparently this isn't completely uncommon for long late afternoon surgeries if at the end my body temperature is low.  It is just another precautionary measure.  It was something that I hadn't considered though and is taking a little while to process.

Another thing that I hadn't considered is: That dressing gowns aren't necessarily the most comfortable thing to sit up in bed and watch tv in if it is a bit cool and maybe bring a wrap or cardigan.  I'll need to process the whole 'cardigan' thing too....  :)