My hippie adventure

3 year anniversary

2012-01-20T06:31:00.000-08:00

Today marks 3 years since I got new legs! all is going well despite rumours of terrible experiences from others who have had the same surgery. I've read scary articles in the new york times of recalls of most makes of inserts but i'm just grateful to have a healthy body and legs i can use!!

Looking back a year on

2010-01-20T06:12:00.000-08:00

Wow, I cant believe how far i have come in a year. Last year today was my surgery and today I feel totally normal. I can run, horseride, do yoga classes and have not had one inkling of pain in 345 days (I am not counting days of recovery which lets be honest had me in tears). I am so grateful today for all that has changed in my life- I have so much more energy and drive to do active things. I am always at the gym now, Rich and I went horse riding for hours in the Transkei, I do weekly yoga- I can sit cross legged for the first time in my life (although i am a wee bit stiff), I can finally position myself properly when working with clients, I can climb over a fence without thinking about it, I am totally comfortable sitting at a picnic. All these things sound ridiculously silly to be raving about but when you cant do them, they are huge barriers. I want to thank everyone today that supported me, helped me through, visited me and made me laugh. Today a year on, I reflect on where i was and where I am now and I can only thank God for his many blessings.

2009-08-23T08:52:00.000-07:00

2009-08-23T08:43:00.000-07:00

The tin man complication

2009-08-23T05:40:00.000-07:00

I have just celebrated my 7 month surgery anniversary! All is great- i gym regularly, walk totally normally and can now sit cross legged (a bit stiffly) and do yoga and all sorts of new things. That said, I have now earned the name "sqeaky"...a little while ago when i was walking up a steep hill with a friend, my right hip started to grind. I got the fright of my life and it didnt go away for 3 days!! I quickly made an appointment with my surgeon and had x-rays done but all was fine. My new bone grafts were solid and nothing had slipped.He told me i had nothing to worry about- that sometimes particles get in between the metal and get ground out like a pestle and mortar. Phew!!! but today....rich and i went on my first hike since the op and the grinding started after about an hour walking. On the way back, my left hip squeaked so loudly that even rich heard it on the path in front of me. I stopped dead in my tracks, scared to put my foot down. We carried on a little way but the squeaking came back. Really loud!! As soon as i got off the mountain i went to look up if anyone else out there has had this problem- and found this site (see my links) where apparently this happens to a lot of people after or during strenous exercise. I sound like a tin man- i mean its funny but i dont know if i could laugh it off if this was a permanent problem- i mean i would never be able to sneak up on anyone!!! So i am going to try glucosamine tablets that apparently help to lubricate the metal. How totally weird.So if you hear what sounds like a rusty gate hinge, it could be me coming to say hello!

Monday thoughts

2009-03-23T03:47:00.000-07:00

hello all,

once again i only have good things to report. My scars are softer and less raised and i am now walking so normally i dont even think about it anymore. Relearning movements is difficult and takes a lot of energy but i am so blessed to have not even an ounce of pain anymore. Its fantastic!! Now that i dont have a limit, i am finding it hard to remember that i can do whatever i want. How strange. I'm hitting the gym- going to greece as a celebration in part of my new freedom. How amazing it is to be free!

The road to normality

2009-03-17T10:14:00.000-07:00

Its now week 7 and i am beginning to wonder if i dreamed all this..I am walking so well that i cant believe its been such a short time. The crutches are gone and i am able to walk fast, i'm back at gym and at work and all is fine. SOmetimes i get a little bit tired and physio is still really hard work but i have to be patient. I am pushing myself from here on out to get super fit and strong. No mercy for the couch potato of my former life!! I have found a wonder cream for my scars- its full of elastin and its really made a difference-they are much softer and hopefully soon the redness will go away. So on my list of things i want to do in the near future is go for a hike, ride a horse again and just general exercise and fun. this operation is honestly the best thing i could have done and my only regret is that i didnt have it sooner(like 3 years ago) when my muscles wouldnt have been so messed up. hooray for technology!

Week 5

2009-02-28T02:45:00.000-08:00

I have reached a level of all out exhaustion and wince when moving! I've had intensive physion and its been helping so much but my muscles have gone on strike. I had dry needling to try activate some muscles and release the really tight ones and it worked amazingly well, In one session i got more movment than i have ever had and i truly recommend it to anyone with muscle problems! The pain is worth the gain- and the pain is really not too bad. I am over my crutches- they're just getting in the way now when i want to do things. Otherwise i am hoping to be able to work soon and get on with stuff- gym and being active without feeling total exhaustion. So so so so tired today!

week 4

2009-02-22T09:47:00.000-08:00

Its been a crazy time lately. I have been going to physio daily with sally anne, which has been great cos we do a lot of exploring together in terms of what works and she is excellent. It hurts like being punched in the face but what i have realised more than anything is how much damage was done over the years. My muscles are so tight, some dont even know how to move or work and my movements are totally mass pattern- my body is having to re-learn proper movement all over again and its hard work. I have had really depressed moments with the slow progress- it seems everyday we find something new that is a problem- this muscle and that joint- i mean its positive but i just want everything back! haha, patience is a challenge. I'm driving now and all going well. I am finding my crutches more of a hassle than anything else and can walk on my own for short distances. Hooray!! I'm focussing a lot of my energy on overcoming pain and pushing through it so although progress is slow i am sweating buckets to get back any inch of function i can. Its great! My scars are still purple or red and i was worried they were becoming raised but they seem ok- still tingle when i sneeze though- and they are sometimes a little painful. But otherwise i really cant complain at all. All is well at 4 weeks

Week 3 post

2009-02-12T22:05:00.000-08:00

Hello all. I've hit the week 3 mark and getting much stronger. My physio sals stretched me out which was 'break into a sweat' painful but i felt so much better afterwards. Rehab is the most important part of this whole process- I am being really dilligent with my exercises but still have trouble sleeping at night due to the pain in my right heel(pressure areas seem to develop when i sleep). I drove my car around the block too which was fine- just takes some getting used to. The weirdest thing is that every time i sneeze my scars tingle- i keep telling rich this has to be some kind of spidey sense but for what? haha my superpowers are developing day by day. My scars are looking good (even if they are 20cm long!) and i am massaging them and moisturising them twice a day- the skin is really dry and i am an itcher so want to make sure i dont damage them at all. Another weird thing is that my whole body shape has changed- posture and hip width (sigh)- most of the pants that i have dont fit me anymore. I used to have an anterior pelvic tilt so my butt stuck out and now that it is straight my pants fit in different ways, i am also taller so at the moment i am trying on my clothes and having a laugh at myself. Most of them i will give away, besides its a great excuse to find a new wardrobe! All is fine at week 3 and i am a lot more independant, which is great.

Day 19 post

2009-02-06T06:44:00.000-08:00

I had to laugh at myself today because i went to an interview for a physical rehab post on crutches- probably a never seen before sight. I am feeling strong. I am stretching and working at my recovery- For the first time in over 8 years the soles of my feet touched in a stretch (like semi butterfly lotus like stretch but not quite) and i can stretch more than ever before. Its so strange not knowing what normal is and therefore not knowing what i should be able to do etc. My scars are an ugly red but they are pretty awesome battle scars! I'm finding the whole micropore your scar technique a little tricksy- it keeps tearing and bunching up when i sit down!! But i am bio oiling my metal parts haha and doing well.

week 2 post surgery; stitches out

2009-02-04T07:27:00.000-08:00

I've just got back from Dr Stewarts and my stitches are out- scars are looking good and much better than i expected. Yay, bikini! He stretched me more than i have been stretched which hurt a lot but i want it all back so no pain no gain. Despite saying that i am feeling a bit shaky today just realising how far i still have to go =rehab, movement and a wee bit of a panic> when am i going to be able to work again?? I am walking well and can get up and down with no complaints. Having the stitches out was painless and a breeze. Its a relief to see the scar- its kind of like..wow ok, here is the proof that i did actually have surgery just two weeks ago. I've been out with friends(was fun trying to stuff me in the car) and am feeling positive but i guess also hit me today how far this whole adventure stretches. On the drive home, i sat for the first time at a full 90 degrees and it was so weird!! It felt like i was sitting on a big metal ball(which of course i am!!! haha) but i had to check under my butt obsessively cos it felt like i was sitting on my cellphone but wait that is my leg! I only really felt it on my left side and it was mighty uncomfortable and i hope it goes away. Otherwise i am fine but having a bit of a downer day for some reason.

Difficult things can surprise you

2009-02-02T22:20:00.000-08:00

Because i'm writing this for people who want to know all the Birmingham operation entails...yes, there are crap things about having this op- and for all those taking the plunge these are the ones i experienced: (in no particular order)
nausea and vomiting, itching from the morphine(i rate this as a 11/10 in crapness), taking the drains out (25/10), continual burning pressure areas on my heels- more on the right(this was really uncomfortable and sore), itchy scars, stiff joints, A HA HA HA HA...that is the end of my list!! I have taken pain medication but in all honesty i have really felt no pain. my pain threshold is high yes (from years of training in pain ha ha) but i was so scared for this op and the pain i thought would come and it hasnt. Considering that i have had major surgery i am feeling great!!! So if you thinking of having this surgery my question is what are you waiting for? Being an OT has i guess made me suck it up. I've treated many patients who have inspired me and in times when i found it hard i would think of their faces and give myself a virtual slap in the face! of course being naked girl in hospital and having a catheter and using a bed pan and being washed by strangers and all that is difficult but its temporary and i didnt feel undignified! I was excited to be free of this burden and my nurses were so amazing i didnt care about difficulty. Positivity is the best weapon you have and i laughed so much in hospital (maybe that was because i was semi high for 5 days?) but i really think difficult things make you strong and what a privilege to have a chance to be strong. I mean please, i have terminator legs now! So how am i doing now? i am walking and independant- i just cant carry stuff much due to crutches. I feel normal- like i just want to jump up and run around and then i remember i cant. FOR NOW!!!!

thoughts

2009-01-29T07:01:00.000-08:00

Who are we when we experience such a big change? Who am i now that i have a clean slate, a new chance? I got up today and was able to dress myself, make my bed, have a shower with no pain. Now that the pain is gone, my brain space has so much more time for thoughts. It used to be cluttered:= plan movement in my head, plan ahead, miss out on hikes, be less adventurous due to the movement problems (eg, if we snuck into a pool i couldnt hike the fence and the only thing my genius friends came up with was to dwarf toss me over the wall)I avoided life because i wasnt free in it? i dampened plans of hiking, active stuff just to hide the pain of not being able to participate in them. But no i have no restrictions (that i have seen yet) and now i cant hide behind any excuse of inability- I AM LOVING IT! so challenge me- excuse the expression but i have grown some balls. and balls to the wall folks!!i look forward to pushing my limits and finding myself, whoever that person is, you can be guaranteed that she is going to be a "smooth operator". (hahaha, thanks spoony- that was the best line and made me laugh so much)

Mini moan

2009-01-28T03:32:00.000-08:00

Hello all, i am very tired today. Still no pain but have had such trouble sleeping. For some reason my mind just wont shut off and getting up to go to the loo at night is a long process. I am finding that at the end of the day i am totally finished and my hips start to stiffen up. I had a lovely visit with so many friends yesterday (erin- it was so great to see you and ruthie poo- rock on legend). there is really nothing like family- thanks for coming all the way dans and kober! My mini moan is this- my ankles are so sore- how crazy is that? not my hips that have just had a major makeover- nope- my ankles!! the pressure stockings i have to wear are devil spawn- mom helps put my legs on pillows at night but if i get up in the middle of the night i cant lift my legs back onto the pillows so i leave them flat and the stockings of death are straight on the mattrass and then my heels burn like nothing else from the &**#@ stockings. It feels like my feet are on a hot plate and it keeps me awake. But i mission and somehow by crazy moving get my feet up and try sleep. I laugh at myself all the time and you should too. I look like a lost swiss yodeller in these stockings. I have to say i am so overwhelmed by the support and love i have received- its getting me through and i cant say how much it means to me to have so many people who care. I am in awe. We were talking last night about how perfect timing is- I originally wanted to wait a few months cos i was worried about finances and i thought who am i to have such an op when people suffer greater things- but timing is perfect. If i had waited i could have faced a permanent disability- my bone was literally ready to pop and then where would i be. God is a God of many blessings and i am being showered right now- feeling pretty

one week anniversary

2009-01-26T22:32:00.001-08:00

its been a week today since i took the plunge and i am feeling really strong and legs feel much more like mine. Woo hoo! going off to shower now and do my exercises!

My first day home

2009-01-26T09:13:00.000-08:00

Mom and John had sorted my raised toilet seat beforehand and my bed is on bricks so all was sorted but there are lots of things that are hard when you get home. the basin is too low for me to wash my hands and i cant bend, i have to GI jane push myself up from the loo or chairs- my arms are going to be pumped!!! I never imagined i could be this tired. it is a tiredness beyond tiredness. I have been up and about a bit several times but am finding my hips are stiff and i have to really will myself to move. my left hip is sore and uncomfortable while my right is totally cool. I am walking fine although i am tired but as soon as i sit i feel sick- not really sure why cos i can sit propped up in bed and feel fine. I think its probably my neck being unsupported- my neck and shoulder muscles are so sore and my elbows are shot from pushing myself up- the skin is getting raw but pain wise i am fine with my medication. Even when it starts to wear off its not bad, i can feel the stitches on my butt. Mom is having a great time dressing me in hideous unco ordinated outfits (hot pink and forest green haha) and rich is tucking my pants into the stockings so i look like i have liederhausen on. Fun times all round. We really are laughing all the time and its great but sometimes i feel useless and its difficult to ask for help cos i want to do everything myself. I think i am pushing myself to do too much at once but rest i must. I am really happy with my new legs adn i can feel my posture has changed but i think it is going to take a long time for my muscles to adjust after 5 years of shortening and compensation. I am just so relieved that i finally have a chance to start a new life and break free of so many restrictions. It is the best gift i have ever been given. talk to you soon.

Day 5 "the stairs"

2009-01-25T06:42:00.000-08:00

I have made a wonderful friend in my ward neighbour so we have been encouraging eachother and chatting which has really cheered me up. I slept like a baby but last night learnt: DONT EVER take your pain meds if you havent eaten something. the nausea demon comes back with a vengeance!! I'm working with a lovely physio called nadia and we went off to do the stairs. It was a weird feeling to pick up my legs- they feel so heavy but i got up the flight and then was nauseous and sweating like mad!! exhausting stuff!! i was able to get up a few times to go to the loo during the day and then it seemed that because i was doing well Dr Stewart might let me go home. I was feeling really strong so waited for him to come at around 6pm to give me the go ahead. I was so determined to go home i packed all my stuff and my family came to get me with rich helping me out. I walked out of there barefoot, in my nightie and sweats happy but so so dizzy. every time i get up i feel spaced out and sweat but had told mom to bring all the stuff we needed for our getaway and when we got to the car it was a lot easier than i thought. Its a high pajero so i just sat in the back hoisted in by rich and slid in on black plastic bags. I felt great all the drive home and made it all the way inside but then was totally overcome. Tired, emotional, sore and just feeling sick as a dog, I put my special cushion on a barstool with a backrest but i just couldnt sit, my head was spinning and i felt so weird. As soon as i lay down i was totally fine again. Mom, John and Rich made a lovely supper with roast potatoes and everything but that was how i knew i wasnt right- i just couldnt eat more than one when my record is 13!! hee hee, i love them so much. i was off to bed and was out for the count. I woke up at 3am needing to pee like a racehorse and called for mom to come help me but after no response i had to make a plan. I was literally so body tired that i couldnt lift my legs at all. I had to plan the movement and almost force with all my will my legs to move. its a feeling you can only understand when you have it- its bizarre. I knew i was never going to make it to the loo, i just had no strength so i looked around and did a mac gyver. Take one puke bucket mom had put next to my bed and get it at the ready. Use one long reacher to push the pillows out from under my legs(that took almost an hour of effort by the way- they dont grip soft stuff apparently) i then pulled my body using the sheet down the bed with the bucket and peed in it(sorry if this is too much info for some people but this is the real deal haha). Luckily i had some tissues at my bedside. I swear i peed like 5 litres!! then i had to put the bucket on my bed and balance it and pull myself back up the bed not knocking it over, this takes a lot of effortt. I got the bucket safely down. rested a little and then my stockings(you know those sexy granny pressure ones?) started to hurt my heels so i had to use my long reacher to push the pillows under my legs and use literally every last bit of strenght to lift my knees. I felt like i had run a marathon and then i couldnt get back to sleep for ages. For some reason i was terrified i would forget some of the nurses names who cared for me so much and i was planning my thank yous for all of them and my friends. I dont want anyone who has helped me through this forgotten. I could never do this alone...so that was day 5.

My first real walk

2009-01-24T08:04:00.000-08:00

With all my tubes out i have unfortunately had to succumb to the dreaded bed pan. A word that strikes fear into anyone who has ever been hospitalised. But cos i need to pee so often( i have a problem ok) i have become really good at using my monkey chain ( yes i have a monkey chain- how cool is that?)to pull myself up and can use it on my own. Last night i had a pee and pulled myself up got the bed pan out from under me and reached for my box of toilet paper and the whole box fell onto the floor so there i was hanging mid air laughing at how ridiculous it was. Of course there were no tissues in sight. haha Luckily a nurse happened to walk in and save me.

Today was a stiff day and my hair was so greasy i could fry twelve eggs on it or run a small car- so i made having a shower my goal for the day and missioned to get there, I walked today with crutches for the first time leaving my zimmmer alone. oh yeah. crutch work is hard and it kind of feels like moving through thick cememt but i managed ok. the most surprising thing was the lack of pain- ok i mean its uncomfortable but i was expecting raw pain and a herd of rabid buffalo biting my legs at the least but no just stiffness. I tend to start sweating immmediatly when i get up from the exertion and feel pretty dizzy after a while but i am up and determined. My second physio session was a lot easier and i made it to the shower and proceeded to wash my hair twice. THE BEST FEELING EVER!!All this takes getting used to especially the dont move beyond 60 degrees thing- that is really hard. But i am feeling strong. My next step is stair work. I am religiously doing my exercises practically all day and its getting better and better. The nausea is gone and only comes in waves sometimes when i get up which is apparently from the anaesthetic. I look pretty pale and yellowish but otherwise i am doing great and have been very blessed with many visitors (thank you so much to my family, rich who has never left my side, ruthie and roo,bunny jess, me julie and ryan, alan and the colonel- you guys are just so awesome) and the most fantastic staff imaginable. These nurses are a dream and i would not have survived this without them. Sindy, Bukeka, Jane, Lynnette and Abigail, all the night staff who's names i unfortunately didnt catch and of course Cheryl- always making me smile and being so generous and compassionate at every moment.

Day 3 in Surgical wards

2009-01-23T06:56:00.001-08:00

this time i slept a reasonable amount but was still woken up at five am. I had eaten dinner the night before and kept all the food down. HOORAY. feeling so much better now that they took the morphine out. In fact all my pipes are out today-having a catheter sucks! you feel like you need to pee all the time as if i dont already (people call me peanut for a reason you know)So now my catheter is out, my drip is out, my blood perssure cuff is off, my heart stickie thingies are off and i am feeling hundreds- no more itching!!! (this is where you see me do my dance of joy!!- unfortunately not literally) More later- i have to eat my dinner...

Day 2 in ICU

2009-01-23T06:25:00.000-08:00

it is clearly impossible to sleep in ICU- i was strapped to so many machines and beeping thingies and nurses were checking on me every half hour and an old guy kept trying to launch out of bed to escape so it was chaos and i was feeling so so sick. The second i saw rich the night before i vomitted and then i was so good and ate my dinner and then woke up at 1am and vomitted and vomitted and and and... the morphine itch was making me insane even after they gave me stuff for it. Like millions of ants and i couldnt move my legs so it was torture. trust me if there is ever any need for a chinese torture method this is the best one you could ever come up with. Anyway, back to day 2. I woke up at 5 am and had my bed bath. I am literally naked girl here- almost every member of staff has seen me naked at some point but you get used to it. dignity is not really a huge priority anyway. From 5 am onwards there was a lot going on in the ward and lots of beeping so i really didnt sleep at all and was exhausted like never before. The nurses were outstanding and helpful- making me laugh every minute and really cheering me up. I tried to eat a little and had ruth visit and my parents and alan and later rich. It makes it so much better!! In the morning i had physio which was sore because i was so stiff but turning me on my side was pretty bad and painful because of the wound drains i had on either side so Dr Stewart said they could come out. My lovely nurse Juanita took them out for me but HOLY SHIT! it was the worst pain i've ever had. Because it starts to scar around the tube when it pulls out it rips the new tissue and i just pumped that morphine as hard as i could but it still was the worst pain ever. Juanita did the first leg and i thought i was going to pass out but it was soon over- whoa that is pain central!! Horrible of horrible- like a knife slicing into your leg or pulling out a vein. I stood for a few minutes which felt weird- almost like i had clay legs or no legs at all but i got so dizzy i couldnt walk at all and it was back to bed for me. My physios have been lovely and really supportive. Jana was with me from day one doing my bed exercises and i have been working hard to keep practising. Also trying to forget i am an OT and let myself be a patient, which is hard. But its good for me!!At lunch time i was transferred to the surgical ward upstairs and was still feeling uber nauseous and hadnt eaten anything for fear of more vomit. I was feeling terrible. I got up again and walked maybe 5 steps before i was sweating and dizzy so once again back to bed. but it was my first walk and it was good!! will keep you posted!!!

The day of surgery

2009-01-23T04:06:00.000-08:00

Mom came to fetch me at 9:30am to go and do some shopping for a nightie and hospital shoes but just as we were leaving the door,the phone rang and it was the surgeon's office asking me to come in asap as i would need to have an MRI- Dr stewart thought i might have some stress fractures so then i was NERVOUS! I was pretty calm throughout but being admitted a few hours earlier was terrible as i felt really unprepared. I got to the hospital and did some admin and then went upstairs getting into my ultra sexy hospital gown and getting blood taken (thank God i have good visible veins) and all my paperwork sorted. THen came the waiting. Mom waited with me until 1pm and then i was on my own til 2 when my lovely anaethetist came to chat to me. I was eventually taken down to surgery at around 3 by a fantastic lady called Joanie, who made me feel really calm and relaxed. Despite that i started to cry as soon as i came into the surgery- i was so nervous and just so so freaked out. Dr Stewart said he was worried that my bones looked really soft so said he would have to do a biopsy etc and also that i had a cyst in my left leg. Geez!! but i got a box of tissues and everyone there was great- Fatima said she was going to hold my hand and i was wheeled into surgery. My anaethetist gave me a little shot of something and then i sat up on the table and leant over in preparation for my spinal. But it never came....I woke up and my dad was there and i kept asking if we were going in cos i was really tired of waiting for this op and he said no, you're done. that was a surprise!! I honestly dont remember anything from the surgery at all apart from sitting on that table and a guy called Eddie introducing himself to me. I was a bit confused and NAUSEA hit the moment i woke up. rich came in with flowers and i was so happy to see him...and then i puked!!! again and again and again. THe morphine i was on leaves you with the side effect of feeling like you have millions of ants crawling all over your body. I have never been that itchy in my life and it was awful!! I felt zero pain on day one and was feeling pretty good. Family and friends came to see me and it was great.

The day before

2009-01-18T22:57:00.000-08:00

I keep waking up anxious for the last while so i'm pretty tired today. Feeling nervous and also excited that its finally here. No other thoughts right now just eeeeeeeeeekkkkkk and aaaaaaaaaaaaahhhhhhhhhhhhh!!! and in the words of Nic..looking forward to blinging my hips with a chrome finish! haha

what surgery am i having?

2009-01-16T04:45:00.000-08:00

A bilateral bone resurfacing! Basically what this involves is dislocating my hips, shaving the top of the head of the femur off and capping it with cobalt chrome. then a new socket is made and the result is a metal on metal joint. i'm closed up and hopefully all is well with my new robot legs.

2009-01-16T00:04:00.000-08:00

A history of me and Otto's syndrome

2009-01-15T23:21:00.000-08:00

I was born breech via an emergency caesar which some doctors indicated could be the reason my hips were affected. No one really knows why people get Otto's Syndrome but gnerally it is familial (passed through generations) or spontaneous and pops up during puberty when there is accelerated bone growth.

I remember when i was a kid (although i still am? haha) that i could sit cross legged and had no real problems with movement. I was active, i enjoyed horse riding and when i was in my early teens had a horse riding accident where i came off with my right leg still in the stirrup and really hurt my right hip and muscles. When i started to have pain in that leg i always thought it was a result of that accident. As i went into early high school i started to notice that i couldnt sit cross legged and that i had a lot of pain when i was horse riding. I couldnt get my leg over the hore i loved to ride. How strange? My family was having a lot of problems at the time and my legs become a definate non priority so i left it and thought it would go away.

My experience of Otto's Syndrome has been like surprise ice that i read about. Freezing that happens that you dont even see. If i look back now, i can see how subtle Otto has been in freezing my life. My movements and limiting me in what i want to do. I went to University to study Occupational therapy and in my first year i had the most unbearable pain. I thought it was sciatica from that old injury but i couldnt sleep. I writhed in agony every night crying and biting my lip. It was an ache that never went away. I started noticing i had walking problems, my right leg is more affected and it turns inward when i walk up stairs. My varsity friends started to notice i limped and the PAIN was unbearable. i remember days when i just couldnt walk. My OT friends would each hold me under my arms and carry me to lectures and help me up stairs. I didnt know what was happening to me. That year in 2004 was tough. I went to see a physio at the university to finally get checked out and he said " I only see movement this bad in patients who have been comatose for years" WHOA!!!! so thats where the search for answers began...

I went to my GP who sent me to rheumatology for testing. Originally they thought it could be rheumatoid arthritis so i had full blood work and x-rays and went to see Dr Hanna an orthopaedic surgeon. He was the first person to give me an answer- I had Otto's Syndrome! he said surgery was not advised. I didnt see a doctor again until last year. My function has decreased with each year (see list of what i cant do haha. Some days are pain days, if i do too much (like going dancing with my friends or a long walk) i pay for it with sleepless nights and pain for several days. Some days i feel normal apart from my walking. When i am tired i walk badly. This experience is like being frozen very very slowly. I have become less active and less adventurous in fear of pain. I went through university and started working but it began to affect my work- i couldnt get in to positions i needed to help people with physical rehab. So last year in ocotber i went to see Dr Leith Stewart after looking him up on the internet. I needed to know what had happened in the 4 years since i seen someone and if it had got worse. I needed an answer to the eternal should i have surgery debate. Dr Stewart confirmed what i already knew- i needed the surgery so here we are a few days before i go in and Dr Stewart starts to "thaw" my frozen ness. those hippies dont stand a chance!!!!

What is Otto's Syndrome?

2009-01-15T23:06:00.000-08:00

Ot·to pelvis (t, ôt)
n.
An inward bulging of the acetabulum causing the prominence of the femur to be reduced.

INTRAPELVIC PROTRUSIO ACETABULI (OTTO PELVIS OR ARTHROKATADYSIS)
Protrusio acetabuli, or Otto pelvis, is characterized by a chronic progressive protrusion of the femoral head into the acetabulum and pelvis ( Fig. 25-38). About two thirds of these lesions are unilateral and occur most often in middle-aged individuals but may develop during adolescence. Pain and limitation of motion usually are the indications for surgery.

For my non- medical friends what this means is that my thigh bone is "migrating" into the socket of the hip causing reduced movement and pain. Its a chronic condition that will continue to progress until the bone breaks through or i can no longer move the hip joint at all and it fuses.

Freak out

2009-01-15T22:55:00.000-08:00

hmmmm...i am having a general panic stations freak out.No specified list- just a general "shit, i am having major surgery" variety. worry worry worry about pain and insurance costs and loss of independance (even if it is for short time, i like my independance). So this generally involves me running around in circles- I am cherishing moving and trying to remember how i walk now so i can have a mental image of before and after. My hips are aching- i think they know their time has come and they are having protest demonstrations in the acetabulum and beyond. haha. I think you know you having a freak out when you think your hips are conspiring. haha. it is time to eat a delicous coffee cupcake ruth and i made yesterday. We been keeping busy and i really appreciate time with my friends right now. just making me laugh and my amazing boyfriend who knows me so well. thank you guys! you keeping me strong.

One week to go..

2009-01-14T11:48:00.000-08:00

The one week countdown...ta ta ta ta ta ta ta (sung in its the final countdown tune)

I went to see my physiotherapist Genevieve today for the first time. She went over all the things i’d need to know for the first few days post op and gave me a really helpful book on the do’s and donts and exercised i will be needing to do. The weirdest thing is being on the other side of rehab treatment- being the patient and feeling how it feels. Being an OT i have worked with so many clients and not given serious thought to how difficult and scary it is to be a patient so i think this whole experience will teach me a lot about compassion for my clients of the future. In the words of my physio, this experience is going to be "awful"- and that makes me very optimistic haha. Having both hips done is far harder as i dont have a leg to stand on haha again. I think the cool thing is i get to use a walking frame- always wanted to do that. as you can see nerves are starting to get the better of me and today i am going to try sort out my assistive devices. I'll need a long reacher and raised toilet seat and of course crutches which i am looking forward to poking people with. Jokes aside, it is a really difficult thing to be facing. I am still walking relatively pain free everyday and i think of all the people i've met who are worse off than me and my mind goes crazy with trying to justify having a R180 000 operation. My friend Jules asked me yesterday what i cant do because of my hips and i thought...it all seems so small- little things that only i notice i guess- like walking funny, back pain, having to always think about my movements (a future list of exactly what i cant do will follow- it seems a worthy list to make and hopefully later i will be able to cross out all the things i cant do!!) I am feeling pretty emotional and low about it at the moment. Its a big step and i keep thinking i will be ok, i could manage without surgery but then i think back to my surgeon saying..it will just continue to progress until you'll have to have a total hip replacement. I guess in my mind i thought i would be healed if i focussed myself on it with prayer and effort and stretching. But there are some things that cant be reversed and this is one of them. I used to think surgery was the total last resort and i would never get there but now facing it its a strange feeling- almost like a cop out. How weird is that? Well i'm off to buy a special hip cushion and focus on moving and jumping and bending and skipping and whatever else i can think of that i wont be able to do in exactly 5 days!!!! aaaaaaaaaaaahhhhhhhhhhhh!!!!