'A long long time ago, I can still remember when that music used to make me smile' ... The music still makes me smile but mostly I grimace in frustration. Arthritis or Arthur (I still feel pangs of heart break that our brave, sword wielding hero should be associated with such a cowardly condition) made the music die.
Dancing, high heels are taken away to be replaced by sitting, smiling 'no, I'm fine thanks' and nodding reassuringly.
Every day with Arthritis is a perfomance. I should win an Oscar, an Olivier, a Bafta for my day. No actress or actor could match this.
Wake up, rearrange crunching, cracking, screaming bones until you can sit up by grabbing the side of the mattress and hauling myself up.
Swing leg over edge of bed and grab crutches. Stand, sit back down (rinse and repeat as the shampoo says) until balance is stabilized. Hop to the bathroom, have comical moment with crutches and loo seat, return to bedroom and sit down for 10 minutes until pain throttles back enough to be able to see straight.
Get dressed. No easy feat when you can't reach your toes - and wielding crutches set off downstairs, avoiding cats.
Saturday 1 March 2014
Wednesday 1 January 2014
Make coffee, arrange pills to be swallowed and apply TENS pads to top of leg; real, not artificial - that would be daft :)
Swallow pills and crutch to the bathroom. Applying mascara is always tricky; applying it whilst holding onto crutches is a whole level of skill above that. Let go of the crutch and the hip can suddenly 'give' - the 1960's Panda Eye is suddenly a major feature of my look.
I have to get up earlier and earlier each morning to ensure that I have enough time to remove my eye make up and reapply it at least 3 times, so I leave the house looking human rather than an extra from 28 Days Later.
Swallow pills and crutch to the bathroom. Applying mascara is always tricky; applying it whilst holding onto crutches is a whole level of skill above that. Let go of the crutch and the hip can suddenly 'give' - the 1960's Panda Eye is suddenly a major feature of my look.
I have to get up earlier and earlier each morning to ensure that I have enough time to remove my eye make up and reapply it at least 3 times, so I leave the house looking human rather than an extra from 28 Days Later.
Sunday 1 December 2013
So how did it come to this ...
As a child, I danced. Ballet, tap, anything as long as I could dance. A constantly moving sticky ball of tulle and ribbon, I danced my life away.
Then, at 16 I met a boy; with a motorbike. It was love at first sight, followed by a long summer of firsts, heavenly moments and promises.
Late summer, Boy, bike and I met a drunk driver; head on. Drunk driver bounced, the boy died and my smallest injury was the loss of my right leg, way above the knee. No more ballet.
Years passed and I learned to use my brain instead of my legs. I gained a couple of science degrees, a masters, a career, a husband and two children.
Mostly good things.
Then, at 16 I met a boy; with a motorbike. It was love at first sight, followed by a long summer of firsts, heavenly moments and promises.
Late summer, Boy, bike and I met a drunk driver; head on. Drunk driver bounced, the boy died and my smallest injury was the loss of my right leg, way above the knee. No more ballet.
Years passed and I learned to use my brain instead of my legs. I gained a couple of science degrees, a masters, a career, a husband and two children.
Mostly good things.
Friday 1 November 2013
Driving up the M4
Sitting in traffic - the Reading junction of the M4 one morning about 4 years ago, my hip 'pinged' and I couldn't wait to get out of the car. No matter how I sat, wriggled, moved or squidged about, my hip hurt, my knee hurt and my ankle throbbed.
After a couple of weeks of this annoyance, I went to the G.P. He suspected arthritis and sent me for an X-ray ... well, he was right about that.
My hips looked as though they belonged to two different people, as if two different X-rays had been spliced together in the manner of a Victorian Specimen Hunter - I am a Platypus!
Right hip (above the amputed leg) looks absolutely perfect. Right amount of cartilage, perfect spacing around the femoral head - no cracks, Osteophytes, no evidence of wear.
The left hip ... shocker ... looked like an advisory warning image from The Old Age Handbook. More cracks than a thawing pond, osteophytes as numerous as stalactites in a cave, no spacing, no cartilage and my pelvis was twisted and distorted with the left side 3 inches lower than the right.
Hmm.
After a couple of weeks of this annoyance, I went to the G.P. He suspected arthritis and sent me for an X-ray ... well, he was right about that.
My hips looked as though they belonged to two different people, as if two different X-rays had been spliced together in the manner of a Victorian Specimen Hunter - I am a Platypus!
Right hip (above the amputed leg) looks absolutely perfect. Right amount of cartilage, perfect spacing around the femoral head - no cracks, Osteophytes, no evidence of wear.
The left hip ... shocker ... looked like an advisory warning image from The Old Age Handbook. More cracks than a thawing pond, osteophytes as numerous as stalactites in a cave, no spacing, no cartilage and my pelvis was twisted and distorted with the left side 3 inches lower than the right.
Hmm.
Tuesday 1 October 2013
You need a THR he said ...
A 'THR'?
Total Hip Replacement and with those words my journey began.
The NHS is in a dreadful state and as my hip problems can be related to the loss of my leg, they are uninsurable (pre existing conditions et al), so NHS it is. Mostly, the problems are caused by hours of 'good toes and naughty toes', dreams of Oddette and Odile, points and eating of tissues.
Proper research is the key to this, so I read everything I could; web (scary), books (few and far between), doctors info (sadly limited).
New treatments such as hyaluronic acid were requested, steroid injections into the hip but all were refused. The real reason is of course, cost but I was told that I wasn't ready for them yet, despite spending my evenings crawling about the house like an injured cat at the end of the day.
When I finally had a referral, the surgeon said it was too late for any other treatment and I should have been referred earlier but admitted I hadn't due to funding restrictions.
He was also somewhat embarrassed to find I only had one leg (GP forgot to put it on notes).
Worse was that no one wanted to do a THR on someone with only one leg - too dodgy - so I was referred from one to another ... 'ever since I was a young boy, I played the silver ball' ... I was the silver ball.
Total Hip Replacement and with those words my journey began.
The NHS is in a dreadful state and as my hip problems can be related to the loss of my leg, they are uninsurable (pre existing conditions et al), so NHS it is. Mostly, the problems are caused by hours of 'good toes and naughty toes', dreams of Oddette and Odile, points and eating of tissues.
Proper research is the key to this, so I read everything I could; web (scary), books (few and far between), doctors info (sadly limited).
New treatments such as hyaluronic acid were requested, steroid injections into the hip but all were refused. The real reason is of course, cost but I was told that I wasn't ready for them yet, despite spending my evenings crawling about the house like an injured cat at the end of the day.
When I finally had a referral, the surgeon said it was too late for any other treatment and I should have been referred earlier but admitted I hadn't due to funding restrictions.
He was also somewhat embarrassed to find I only had one leg (GP forgot to put it on notes).
Worse was that no one wanted to do a THR on someone with only one leg - too dodgy - so I was referred from one to another ... 'ever since I was a young boy, I played the silver ball' ... I was the silver ball.
Sunday 1 September 2013
Drugs, drugs and more drugs
A THR doesn't just suddenly arrive in your life, like a newborn delivered by a stork. A quantum entanglement of differing events bring you to the point of no return.
To function before it's done though, you need drugs. The pain of Arthritis cannot be imagined, described or adequately explained. I've had phantom pain in my amputated leg and thought that the sensation of having a small but determined fire-breathing dragon gnawing your foot off whilst blistering your skin with fire couldn't really be beaten.
Ha, how little I knew.
Arthritis is a pain that is so deep inside you, so impossible to reach (even laden with codeine, paracetmol, NSAIDs and anything else you can swallow and covered with heat patches, a TENS machine on Maximum Sequins Strictly rumba and a full on 'this isn't going to beat me attitude') that you would like a bear in a trap, gnaw off your own leg just to stop it hurting.
The pain is one thing; combined with a stiffness of lithospheric proportions, crepitus loud enough to startle old ladies in the street, a limp (on both sides now ffs) and the sense of weariness that should only come from a weekend of extreme partying; Arthritis is a torture of Greek Tragedy proportions.
It torments, lies to you, skewers you with a sudden spasm of spittle producing pain, then fades to hide back in its cave. It is a boggle, a demon, a spirit of evil, a troll under the bridge of my life.
To function before it's done though, you need drugs. The pain of Arthritis cannot be imagined, described or adequately explained. I've had phantom pain in my amputated leg and thought that the sensation of having a small but determined fire-breathing dragon gnawing your foot off whilst blistering your skin with fire couldn't really be beaten.
Ha, how little I knew.
Arthritis is a pain that is so deep inside you, so impossible to reach (even laden with codeine, paracetmol, NSAIDs and anything else you can swallow and covered with heat patches, a TENS machine on Maximum Sequins Strictly rumba and a full on 'this isn't going to beat me attitude') that you would like a bear in a trap, gnaw off your own leg just to stop it hurting.
The pain is one thing; combined with a stiffness of lithospheric proportions, crepitus loud enough to startle old ladies in the street, a limp (on both sides now ffs) and the sense of weariness that should only come from a weekend of extreme partying; Arthritis is a torture of Greek Tragedy proportions.
It torments, lies to you, skewers you with a sudden spasm of spittle producing pain, then fades to hide back in its cave. It is a boggle, a demon, a spirit of evil, a troll under the bridge of my life.
Friday 9 August 2013
Aches and Pains
Saw the Pain Clinic in May and was prescribed Amitriptyline for neuropathic pain from the arthritis and phantom limb pain from, well the missing leg. This is on top of the Co-Codomol and Meloxicam (a switch from the previous years and years of Diclofenac). For a few weeks, it was working well but now, I seem to have suddenly seized up; like an abandoned bicycle on a canal towpath, my joints have rusted solid.
I rang the surgery to make an appointment with my GP only to find she had left last week! Still, got an appointment with her replacement next week and hope I don't have to go through the whole sorry story again, or I'll need alot longer than the statutory, alloted 10 minutes. Let's hope that when this one refers me to a surgeon, she mentions that I only have one leg, which does affect my walking style and will affect my physiotherapy needs.
The arthritis has really galloped on in the past few months. Not just the pain, which has reached K2 proportions, towering over me day and night but the stiffness, lack of general mobility and utter exhaustion that just a few steps or simple tasks can produce.
Cooking is something I now have to do sitting down, I've given up ironing things and the hoovering has to wait until the OH does it. The bins don't get put out if he isn't here (the binmen never come in the garden to fetch them), the whole process of living is exhausting and almost beyond me.
Thankfully, I can use the computer, so stay in touch with friends and family via social media (and write this blog).
So, what's changed? I don't know for sure, does arthritis accelerate like a mad Ferrari to the finish line, have I over done it by extending the date for the THR, should I have had it done earlier in the year, am I invaded by mutant arthritis bugs, chomping away on my bones? Quite possibly.
Yesterday, I decided that I should go and do some shopping but two aisles in, I had to sit on a box of piled up potatoes. Not elegant or comfortable but there was no other seat - supermarkets don't have seats in convenient places, or inconvenient for that matter. Two more isles and I was perched on a pile of cheap lager, two more and I sank into a large pile of soap powder boxes.
Buying the shopping (not a full weekly load - just a couple of bags), getting it into and out of the car and then into the cupboards took 4 hours and I was a jibbering wreck. Unable to move, cook, make a cup of coffee or even sit comfortably.
Waited an hour for the water to heat and then sank in the bath until it went cold.
Whatever is going on with my hip, knee, ankle, muscles and bones, I don't know but this has to stop.
So I'm going to go and beg for the THR, as soon as it can be done and see what else she can do to help me to move more than 5 yards without shrieking, feeling faint or being in constant pain.
I rang the surgery to make an appointment with my GP only to find she had left last week! Still, got an appointment with her replacement next week and hope I don't have to go through the whole sorry story again, or I'll need alot longer than the statutory, alloted 10 minutes. Let's hope that when this one refers me to a surgeon, she mentions that I only have one leg, which does affect my walking style and will affect my physiotherapy needs.
The arthritis has really galloped on in the past few months. Not just the pain, which has reached K2 proportions, towering over me day and night but the stiffness, lack of general mobility and utter exhaustion that just a few steps or simple tasks can produce.
Cooking is something I now have to do sitting down, I've given up ironing things and the hoovering has to wait until the OH does it. The bins don't get put out if he isn't here (the binmen never come in the garden to fetch them), the whole process of living is exhausting and almost beyond me.
Thankfully, I can use the computer, so stay in touch with friends and family via social media (and write this blog).
So, what's changed? I don't know for sure, does arthritis accelerate like a mad Ferrari to the finish line, have I over done it by extending the date for the THR, should I have had it done earlier in the year, am I invaded by mutant arthritis bugs, chomping away on my bones? Quite possibly.
Yesterday, I decided that I should go and do some shopping but two aisles in, I had to sit on a box of piled up potatoes. Not elegant or comfortable but there was no other seat - supermarkets don't have seats in convenient places, or inconvenient for that matter. Two more isles and I was perched on a pile of cheap lager, two more and I sank into a large pile of soap powder boxes.
Buying the shopping (not a full weekly load - just a couple of bags), getting it into and out of the car and then into the cupboards took 4 hours and I was a jibbering wreck. Unable to move, cook, make a cup of coffee or even sit comfortably.
Waited an hour for the water to heat and then sank in the bath until it went cold.
Whatever is going on with my hip, knee, ankle, muscles and bones, I don't know but this has to stop.
So I'm going to go and beg for the THR, as soon as it can be done and see what else she can do to help me to move more than 5 yards without shrieking, feeling faint or being in constant pain.
Thursday 1 August 2013
A day on crutches
Firstly smile: always smile. This is not just for my benefit but mostly for those who see me. A smiling cripple is far more socially acceptable than a non-smiling one.
A smile means you're ok, they need not worry, feel guilt, open the door or carry your books. A smile on the face of a person born on crutches is their passport to ignorance and no delay.
A smile is essential.
Also essential is to be well dressed. Good designer clothes, excellent make-up, nice shoes and of course a good bag. A well dressed cripple breaks the rules, confounds them and more importantly, it is armour, self defence, a strong weapon in your ability to face the world.
Dress well, smell nice, wear good lingerie.
This is why Arthritis is a performance. It is not enough to act normal, act fine. You must thesp every moment, be as gracious as Noel Coward, as English as the man in a Bowler Hat, 27th in line in the queue for a stamp, as theatrical in your delivery of your life as Alison Steadman in Abigails Party. If you act your little heart out every single day; head held high, pride on your arm, you're equal.
Never let them see you cry, take medication or be less than perfect.
When work ends, you leave and there comes a moment every day, when you round the corner to the car and the air is sucked from your body. Your bones become jelly, your self esteem zero and your energy nil.
Sitting in the car, waiting for the pain to stop enough to be able to drive can be a long wait. On the journey home, every bone will scream at the restriction of sitting still, every muscle will ache, complain and twitch, every sinew will burn with fire.
Immersion in the deepest, hottest bath, enjoying the benefits of zero G for a while is joy.
Each day is a performance and as I said, no actress could ever put on such as performance as we who suffer from Arthritis. We are the elite.
A smile means you're ok, they need not worry, feel guilt, open the door or carry your books. A smile on the face of a person born on crutches is their passport to ignorance and no delay.
A smile is essential.
Also essential is to be well dressed. Good designer clothes, excellent make-up, nice shoes and of course a good bag. A well dressed cripple breaks the rules, confounds them and more importantly, it is armour, self defence, a strong weapon in your ability to face the world.
Dress well, smell nice, wear good lingerie.
This is why Arthritis is a performance. It is not enough to act normal, act fine. You must thesp every moment, be as gracious as Noel Coward, as English as the man in a Bowler Hat, 27th in line in the queue for a stamp, as theatrical in your delivery of your life as Alison Steadman in Abigails Party. If you act your little heart out every single day; head held high, pride on your arm, you're equal.
Never let them see you cry, take medication or be less than perfect.
When work ends, you leave and there comes a moment every day, when you round the corner to the car and the air is sucked from your body. Your bones become jelly, your self esteem zero and your energy nil.
Sitting in the car, waiting for the pain to stop enough to be able to drive can be a long wait. On the journey home, every bone will scream at the restriction of sitting still, every muscle will ache, complain and twitch, every sinew will burn with fire.
Immersion in the deepest, hottest bath, enjoying the benefits of zero G for a while is joy.
Each day is a performance and as I said, no actress could ever put on such as performance as we who suffer from Arthritis. We are the elite.
Sunday 5 May 2013
Pain Clinic
Am very excited. GP has accepted and acted on my request to be referred to the Pain Clinic. I am seeing them on Wednesday!
I had to wait 10 days to speak to her on the telephone (it has to be pre-booked) and when I spoke to her, she said she would take a few days to decide if it was necessary and then asked if I would pay privately if she didn't. I replied that I would think about that when I had her decision.
I never received her decision as promised but I have received a letter from the Pain Clinic asking me to come in on Wednesday. Which is actually amazing as she said it would be at least 6 months before I got an appointment and was actually about 6 days.
I did email them, outlining my situation and explaining that I was waiting for the GP to refer me. Perhaps that made the difference?
Who knows, whatever the reason, I am very grateful to have an appointment with such an expert team. I am hopeful that they will be able to help.
More on Wednesday ...
I had to wait 10 days to speak to her on the telephone (it has to be pre-booked) and when I spoke to her, she said she would take a few days to decide if it was necessary and then asked if I would pay privately if she didn't. I replied that I would think about that when I had her decision.
I never received her decision as promised but I have received a letter from the Pain Clinic asking me to come in on Wednesday. Which is actually amazing as she said it would be at least 6 months before I got an appointment and was actually about 6 days.
I did email them, outlining my situation and explaining that I was waiting for the GP to refer me. Perhaps that made the difference?
Who knows, whatever the reason, I am very grateful to have an appointment with such an expert team. I am hopeful that they will be able to help.
More on Wednesday ...
Saturday 13 April 2013
Blackmail by the NHS and the right to work
So, have seen the surgeon (well, his minion, he wasn't actually there) and told him that due to my new job, I want to wait until next year for my THR.
Also went to see the GP and tell her of my decision and ask her how she could help me to cope for the next year.
I was met with an onslaught of 'I think you're putting it off' implying that I was somehow cowardly for making this decision.
Cowardly! I want to work, I want to continue to contribute to the economy, building my skills to enable more young people to have a chance to succeed at college and be successful in the future. I do not want to go on 'benefits', stay home and do nothing. I want to continue to contribute to society for as long as I can.
I ran through a list of options that I had previously researched, with her. She refused all of them. She also said that the surgeon had written to her and that they both felt I should have the THR now. On previous visits, she had said that she could easily help with medication to enable me to continue working for another 5 years or so.
She asked why I was putting it off and my reply was that:
1. I had a new job, a fabulous job and wanted to work at it for at least a year before I had the THR. It is wrong to take a role and then go 'off sick' for so long.
2. I wasn't impressed by the Physiotherapy offered to enable me to cope afterwards. A sheet of exercises and a set of instructions on how to measure my chairs to see if they are tall enough (not even a home visit) is hardly suitable for someone having a Left THR when their right leg is fully amputated. Physiotherapy should be planned and personalised to suit my circumstances, in conjuction with my prosthetics expert.
3. The local PCT will only offer Metal on Plastic and not the ceramic implant I would prefer.
She nodded at all this but made no comment.
She noted that my hip was very bad (one of the worst she has seen) and that I was a very stoic character. Well maybe, but if I want to continue to work, to contribute to society rather than be a drain on it, surely I can and expect the support of my GP to do so?
Apparently not.
She wouln't prescribe any further or enhanced methods of pain relief, suggesting accupuncture.
I already have purchased my own crutches to walk with (she said she would order some for me, but never did), I've bought my own TENS unit - no point asking for one of those, and take 30/500 codeine and paracetamol 4 times a day with 50mg Diclofenac 3 times a day.
They no longer work.
At night, it is like sleeping on broken glass, waking every hour or so as the pain from my hip is so intense. This is alongside the relentless phantom pain from my non existent leg.
I asked if she could prescribe something to help me sleep for a little longer; she said no.
I feel bitterly let down by the NHS. I wanted to work with my GP to plan my pain relief for the next year, so I could cope and work and have my THR next year, when established and financially, more secure.
This is surely a better way than going off sick for who knows how long, facing an unknown future as an amputee with a THR which may result in my being unable to walk as well as I do now. There are no guarantees with this type of surgery even with two legs, with one, it is very difficult to guarantee a good outcome. That would make me a drain on society, my family and friends.
One more year of work would enable me to be financially secure, and to be able to plan my surgery and recovery.
Surely, that is what the NHS is for; to work with patients to deliver the best outcome for each one?
Unfortunately, I was left with the distinct impression that now I had postponed the surgery for a year, I was on my own. The pain would be my responsibility, my own fault. Sleeping or not sleeping, my decision.
I'm not a drug addict, a fool or an idiot. I made a rational decision based upon my own personal circumstances and am being punished for it. And yes, I appreciate that the surgeon and the GP have expertise and knowledge I do not, but I do not think it is too much to expect them to work with me, in my best interests if that is what I, as a patient, decide.
Unless you are a private patient in this country, you can expect no help, support or guidance. You either do as you are told, when it suits them, or you are left to suffer. I cannot get private health insurance as my leg is a pre-existing condition, and anything that results from that (i.e. the arthritis) is exempt from cover.
I have found that there is a local Pain Clinic, to which I can self-refer. I shall do so but with little hope that an appointment will come soon.
So what do I do now? Find another GP, struggle on?
I have no idea, but I am angry at this, so I will find a way.
Also went to see the GP and tell her of my decision and ask her how she could help me to cope for the next year.
I was met with an onslaught of 'I think you're putting it off' implying that I was somehow cowardly for making this decision.
Cowardly! I want to work, I want to continue to contribute to the economy, building my skills to enable more young people to have a chance to succeed at college and be successful in the future. I do not want to go on 'benefits', stay home and do nothing. I want to continue to contribute to society for as long as I can.
I ran through a list of options that I had previously researched, with her. She refused all of them. She also said that the surgeon had written to her and that they both felt I should have the THR now. On previous visits, she had said that she could easily help with medication to enable me to continue working for another 5 years or so.
She asked why I was putting it off and my reply was that:
1. I had a new job, a fabulous job and wanted to work at it for at least a year before I had the THR. It is wrong to take a role and then go 'off sick' for so long.
2. I wasn't impressed by the Physiotherapy offered to enable me to cope afterwards. A sheet of exercises and a set of instructions on how to measure my chairs to see if they are tall enough (not even a home visit) is hardly suitable for someone having a Left THR when their right leg is fully amputated. Physiotherapy should be planned and personalised to suit my circumstances, in conjuction with my prosthetics expert.
3. The local PCT will only offer Metal on Plastic and not the ceramic implant I would prefer.
She nodded at all this but made no comment.
She noted that my hip was very bad (one of the worst she has seen) and that I was a very stoic character. Well maybe, but if I want to continue to work, to contribute to society rather than be a drain on it, surely I can and expect the support of my GP to do so?
Apparently not.
She wouln't prescribe any further or enhanced methods of pain relief, suggesting accupuncture.
I already have purchased my own crutches to walk with (she said she would order some for me, but never did), I've bought my own TENS unit - no point asking for one of those, and take 30/500 codeine and paracetamol 4 times a day with 50mg Diclofenac 3 times a day.
They no longer work.
At night, it is like sleeping on broken glass, waking every hour or so as the pain from my hip is so intense. This is alongside the relentless phantom pain from my non existent leg.
I asked if she could prescribe something to help me sleep for a little longer; she said no.
I feel bitterly let down by the NHS. I wanted to work with my GP to plan my pain relief for the next year, so I could cope and work and have my THR next year, when established and financially, more secure.
This is surely a better way than going off sick for who knows how long, facing an unknown future as an amputee with a THR which may result in my being unable to walk as well as I do now. There are no guarantees with this type of surgery even with two legs, with one, it is very difficult to guarantee a good outcome. That would make me a drain on society, my family and friends.
One more year of work would enable me to be financially secure, and to be able to plan my surgery and recovery.
Surely, that is what the NHS is for; to work with patients to deliver the best outcome for each one?
Unfortunately, I was left with the distinct impression that now I had postponed the surgery for a year, I was on my own. The pain would be my responsibility, my own fault. Sleeping or not sleeping, my decision.
I'm not a drug addict, a fool or an idiot. I made a rational decision based upon my own personal circumstances and am being punished for it. And yes, I appreciate that the surgeon and the GP have expertise and knowledge I do not, but I do not think it is too much to expect them to work with me, in my best interests if that is what I, as a patient, decide.
Unless you are a private patient in this country, you can expect no help, support or guidance. You either do as you are told, when it suits them, or you are left to suffer. I cannot get private health insurance as my leg is a pre-existing condition, and anything that results from that (i.e. the arthritis) is exempt from cover.
I have found that there is a local Pain Clinic, to which I can self-refer. I shall do so but with little hope that an appointment will come soon.
So what do I do now? Find another GP, struggle on?
I have no idea, but I am angry at this, so I will find a way.
Tuesday 26 March 2013
Pre Op Assessment
Was called in for a Pre Op Assessment, despite telling them that I didn't want it doing for another 12 months. It needs doing, oh boy does it need doing but work, life and circumstances mean that I have to delay it ... as long as possible. This is a fight between me and the OA.
Arrived at the hospital at 8.30 and was met by a lovely nurse who sat me down and offered me a cup of tea. Bless.
I explained that I didn't want it done yet and why and she immediately understood. Of course, the actual surgeon wasn't there (just his understudy, a PT and an OT).
The PT came over to see me and I asked what kind of physiotherapy I could expect afterwards. 'Oh we give you a leaflet, with exercises on' she trilled 'and the surgeon will see you after six weeks'
Hmm.
I explained to her as softly as I could that I only have one leg, the THR will be on the other leg and I may need a little support / advice to learn to walk again. She looked slightly abashed and replied that she 'didn't have a leaflet for that'.
She wandered off, to see someone less challenging and more suited to 'leaflet mode'.
The lovely nurse came back after a while and went through the paperwork with me. She also said that she thought I would be a good candidate for an injection directly into the hip (something my GP refused to do on the grounds of 'cost') of cortiocosteroids and local anastheisa. She would write it up in my note and discuss with the surgeon.
What a lovely lady.
Still, blood, heart and other tests done, I am fit for surgery whenever it happens and possibly I will finally get my injection. Yippee!
Arrived at the hospital at 8.30 and was met by a lovely nurse who sat me down and offered me a cup of tea. Bless.
I explained that I didn't want it done yet and why and she immediately understood. Of course, the actual surgeon wasn't there (just his understudy, a PT and an OT).
The PT came over to see me and I asked what kind of physiotherapy I could expect afterwards. 'Oh we give you a leaflet, with exercises on' she trilled 'and the surgeon will see you after six weeks'
Hmm.
I explained to her as softly as I could that I only have one leg, the THR will be on the other leg and I may need a little support / advice to learn to walk again. She looked slightly abashed and replied that she 'didn't have a leaflet for that'.
She wandered off, to see someone less challenging and more suited to 'leaflet mode'.
The lovely nurse came back after a while and went through the paperwork with me. She also said that she thought I would be a good candidate for an injection directly into the hip (something my GP refused to do on the grounds of 'cost') of cortiocosteroids and local anastheisa. She would write it up in my note and discuss with the surgeon.
What a lovely lady.
Still, blood, heart and other tests done, I am fit for surgery whenever it happens and possibly I will finally get my injection. Yippee!
Thursday 21 March 2013
I can still remember when that music used to make me smile
At 16, I fell in love with a boy. Ballet, which since I was two had been my main love alongside my pony - yes, I was a spoiled brat :), fell to second place. A first love is a powerful thing, no one ever really matches up and when they are no longer alive to be realistically compared to (age, habits etc), they take on an almost iconic status.
So, one night in the hottest summer England has ever had, we went out on his motor bike. We saw friends, had a coffee, drove around just enjoying being together and the warm summer evening. We stopped for a soft drink, talked and then about 10pm decided to go home.
I climbed onto the bike behind him, arms tight around him for what would be the last time. How much tighter would I have squeezed him if I'd known?
Two miles down the road my memory goes ... bits of it are engraved forever on my soul, some bits will thankfully never, ever come back.
I remember lights, noise, a sense of slow motion chaos; a large and vomiting man stood over me, swearing and saying sorry. There was no pain, just confusion.
Then moments of clarity; blue lights, someone trying to get my jacket off (and me cursing at them as they were using scissors on my new leather jacket), being suspended upside down.
The ambulance team who picked me up off the road, removed what was left of my leg from the engine of the bike and then suspended me upside down saved my life. That man, who I do not know, turned me upside down to keep what little blood there was in my brain on the journey to the hospital and held me tight against him on the short journey whilst my blood pumped all over him.
He was an angel.
Things were hazy for a while; white, sharp, blinding, confusing. Then one day I woke up and found myself in a hospital bed, and I was 17. I'd missed my birthday. I'd been taken to a military hospital (nearest one) and was dead when I got there, but thanks to the ambulance man, my brain was still ok and I was revived and filled with blood. Transfusion was a constant process and they said afterwards I had upwards of 40 pints of blood. A neg too, nothing common :)
The doctor told me that I had lost my leg, which I refused to believe. Phantom limb is a common thing and I could and still can 'wriggle my toes' and 'circle my ankle', I can feel every movement. Phantom limb also brings Phantom Pain, which is beyond pain; if you can imagine being tortured by fire whilst having long needles shoved through the flesh, I think it would be about 1/100th of what it is like. Thankfully it diminishes over the years, but never really goes away.
Back to the leg: it had gone and was replaced by a huge, puffy blood soaked bandage. It was the most surreal moment of my life.
The Doctor explained that I had to look at, to accept it now and then as I was doing so, told me that my love had died of brain injuries.
I also had a broken pelvis, fractured skull, had bitten the end of my tongue off (which they stitched back together), two broken arms, one broken wrist, 6 broken fingers, a broken hand, a broken hip, several smashed ribs, internal injuries and bruising that would make me glow in the dark.
This was caused by a drunk driver. Somone who thought he could drink 5 pints and drive home; safely.
He left the scene of the accident but was traced a few days later. No action was taken as most of us involved were dead or incapable of describing what happened.
They took photographs of my leg and put them in a text book (I had to sign and give permission) as they'd never seen a knee so smashed.
I spent 4 months in hospital, 8 months learning to walk again with a prosthetic leg. The physiotherapy is tough but necessary and often hurt more than than the injuries. But it was necessary and made me tough.
For someone who had danced and spun her way through life, I was now a sack of potatoes. That hurt the most, the loss of grace, elegance and high heels.
My love died, my friend (who was on the other motorbike he hit, died too and another was as injured as me. Sadly, he was unable to accept what happened to him and his life is sad).
The physical injuries I received healed but left their mark. I have severe osteoarthritis in many joints, the broken bits ache or don't work well. Internal complications mean that my health is poor and I have to take extra care of how I live, eat, cook.
I take strong painkillers all day and at night, the pain wakes me every hour or so. There is no cure, now or ever for that. I live with it and the knowledge that physically, I am diminished. Walking on a prosthetic is painful, ugly and can never, no matter how good it is, replace the warm flesh that once existed.
Still, I used the brain, so carefully preserved by my 'angel'. I have two wonderful children, a good career and love in my life.
Nothing will ever replace my losses. Life is exhausting sometimes but there are advantages. My metabolic rate, as with all amputees increased as I use twice as much energy as 'normals' to move. My arms, from using a crutch to walk and extra effort to swim, means that I have fab arms (no 'bingo wings', and my remaining leg has muscles an athlete would be proud of. I look great (until I move) :)
I learned to appreciate other things; to admire beauty and health in others, to be glad for them, not envious. To see the joy in movement and appreciate dance again.
Would I change this? No.
I would rather be me, with so many broken bits, so many imperfections than be the drunk driver who did this. I would be unable to live with myself knowing I had taken two lives, ruined the dreams and ambitions of two others and caused such hurt to family and friends.
Drink driving should be a zero limit. No alcohol, and those who do it should be made to serve their time, not in a prison but in a Casualty ward, clearing up and witnessing the injury, the pain and the God awful mess that it causes.
Drinking and Driving .... just don't.
Saturday 9 March 2013
Black eyes and progress
Has been an eventful few days!
Hit in the face by a door, cracked cheekbone, mild concussion. Full on Tom and Jerry 'seeing stars' moment. William Hanna and Joseph Barbera would be proud, every detail was superb, right down to the comedic door in face, pulsating lump on side of face and colourful black eye.
Armed with a full on, Zombie inspired black eye, I rocked up for my interview for new job. Job requires Excellence (LK Bennett frock) and Innovation (Zebra striped Chelsea boots). I'm slightly unsure where the Black Eye sits but hoped it was more channeling 'Dusty Springfield' than carelessness :)
Fab day, terrible presentation (mainly due to composing while concussed) note to self: do not produce a PowerPoint whilst concussed again, lunch with Principal, rallied for interview and job got. Yeah!
However, if I take the job, the THR has to be postponed for a year. This is not a job to allow a six month absence; so appointment with Dr booked to explore drug options, large amount of crutches ordered to be customised to match each outfit / shoe combination (must ask Vogue to run an editorial on this - they are missing a trick here), and hope that this will be the experience I am banking on.
Also received letter from surgeon asking me to go into hospital for pre-op assessment. Will have to break news to him that he will not be making his reputation just yet. No one has done a THR on opposite leg to full on amputation, and I am sure that he was hoping for at least a Lancet article, possibly a Channel 4 Documentary ... c'est la vie. Next year.
Maybe though, someone else will come forward with same issues and I can learn from their experiences. That's a positive (for me anyway).
Life is good.
Hit in the face by a door, cracked cheekbone, mild concussion. Full on Tom and Jerry 'seeing stars' moment. William Hanna and Joseph Barbera would be proud, every detail was superb, right down to the comedic door in face, pulsating lump on side of face and colourful black eye.
Armed with a full on, Zombie inspired black eye, I rocked up for my interview for new job. Job requires Excellence (LK Bennett frock) and Innovation (Zebra striped Chelsea boots). I'm slightly unsure where the Black Eye sits but hoped it was more channeling 'Dusty Springfield' than carelessness :)
Fab day, terrible presentation (mainly due to composing while concussed) note to self: do not produce a PowerPoint whilst concussed again, lunch with Principal, rallied for interview and job got. Yeah!
However, if I take the job, the THR has to be postponed for a year. This is not a job to allow a six month absence; so appointment with Dr booked to explore drug options, large amount of crutches ordered to be customised to match each outfit / shoe combination (must ask Vogue to run an editorial on this - they are missing a trick here), and hope that this will be the experience I am banking on.
Also received letter from surgeon asking me to go into hospital for pre-op assessment. Will have to break news to him that he will not be making his reputation just yet. No one has done a THR on opposite leg to full on amputation, and I am sure that he was hoping for at least a Lancet article, possibly a Channel 4 Documentary ... c'est la vie. Next year.
Maybe though, someone else will come forward with same issues and I can learn from their experiences. That's a positive (for me anyway).
Life is good.
Tuesday 5 March 2013
Spinal or General
So many questions to ask!
Am indebted to my friend Niki, who has already undergone this procedure. Her knowledge and generosity are boundless. Willingly sharing every aspect of her THR (good, bad and ugly) to benefit others. What a fab person she is.
Anaesthesia can be Spinal or General. Honestly, I prefer the idea of a Spinal. Less grogginess after the op, a chance to listen uninterupted to my favourite music and a stimulating chat with the anaesthesiologist. Sounds fab.
Other choices are the type of implant (some do not get a choice - the wretched Post Code lottery), so you get what your local PCT will fund. There are a range of implants: ceramic, Metal on Polyethylene and Metal on Metal. MoM is now out of favour, given the rate of deterioration and leaking of metals into the flesh - ugh. Many people now suffer awful problems resulting from this.
Other choices are surgeon dependent. Anterior or Posterior approach. There is also a Lateral and Minimally Invasive Approach.
The choice is generally down to the surgeon and how they were trained. Some approaches require more expensive equipment or training and have different outcomes. If you want something specific, you generally have to go a la Carte.
Story of my life: I never, ever wanted to eat off the 'house' menu or dress from the a la mode rail. I always wanted the expensive dish, the designer frock, the red soled shoe.
And why not?
Am indebted to my friend Niki, who has already undergone this procedure. Her knowledge and generosity are boundless. Willingly sharing every aspect of her THR (good, bad and ugly) to benefit others. What a fab person she is.
Anaesthesia can be Spinal or General. Honestly, I prefer the idea of a Spinal. Less grogginess after the op, a chance to listen uninterupted to my favourite music and a stimulating chat with the anaesthesiologist. Sounds fab.
Other choices are the type of implant (some do not get a choice - the wretched Post Code lottery), so you get what your local PCT will fund. There are a range of implants: ceramic, Metal on Polyethylene and Metal on Metal. MoM is now out of favour, given the rate of deterioration and leaking of metals into the flesh - ugh. Many people now suffer awful problems resulting from this.
Other choices are surgeon dependent. Anterior or Posterior approach. There is also a Lateral and Minimally Invasive Approach.
The choice is generally down to the surgeon and how they were trained. Some approaches require more expensive equipment or training and have different outcomes. If you want something specific, you generally have to go a la Carte.
Story of my life: I never, ever wanted to eat off the 'house' menu or dress from the a la mode rail. I always wanted the expensive dish, the designer frock, the red soled shoe.
And why not?
Monday 4 March 2013
Zero G
Not generally achieveable on Earth and unable to afford the fee for the 'Vomit Comet' (oh, how I would love to do that) I settle for a deep, perfumed bath.
At the end of the day (and boy, do the ends come sooner now), I run the bath. My saviour, my soul mate, my haven; deep, hot water, bubbles, salt and candles.
Laying in the water, deep enough to float is heaven. I've always liked a bath more than a shower. Showers are too quick and you have to hop over the edge of the shower, which with one leg can have hilarious consequences (for those watching, if not me).
A bath soothes, supports, floats my boat (and my bones). It sucks the strain and stress of the day from your muscles and restores health.
Swimming is another good method. The water is not as warm and the curious looks of people as you hop on crutches to the edge of the pool can be amusing. Teenage boys, who can never resist a comment ask what happend to my leg. I always tell them that 'it was bitten off by a Great White Shark' and then died.
That generally silences them.
Many years ago, when my daughter was small, we used to swim in a friends pool at Playgroup. One day a new boy wouldn't get out of the pool. He had seen me get out and my leg was missing. Logic (alway strong in a 3 year old) indicated that if you got in the pool with 2 legs, getting out meant that one would fall off.
Every mother in the group had to jump in and out of the pool for several minutes to prove to him that legs did not fall off and he just hadn't noticed my leg was artificial.
Bless.
Learning to swim took ages. Without a right leg, I had no opposite kick and for a long time, hit the pool wall every time. Eventually, after a number of black eyes and much embarrassment, I learned to balance my muscles and swim in a straight line.
Swimming helps the Arthritis too. Strengthens the muscles, improves fitness and reduces the gravitational pull of our lovely Planet.
At the end of the day (and boy, do the ends come sooner now), I run the bath. My saviour, my soul mate, my haven; deep, hot water, bubbles, salt and candles.
Laying in the water, deep enough to float is heaven. I've always liked a bath more than a shower. Showers are too quick and you have to hop over the edge of the shower, which with one leg can have hilarious consequences (for those watching, if not me).
A bath soothes, supports, floats my boat (and my bones). It sucks the strain and stress of the day from your muscles and restores health.
Swimming is another good method. The water is not as warm and the curious looks of people as you hop on crutches to the edge of the pool can be amusing. Teenage boys, who can never resist a comment ask what happend to my leg. I always tell them that 'it was bitten off by a Great White Shark' and then died.
That generally silences them.
Many years ago, when my daughter was small, we used to swim in a friends pool at Playgroup. One day a new boy wouldn't get out of the pool. He had seen me get out and my leg was missing. Logic (alway strong in a 3 year old) indicated that if you got in the pool with 2 legs, getting out meant that one would fall off.
Every mother in the group had to jump in and out of the pool for several minutes to prove to him that legs did not fall off and he just hadn't noticed my leg was artificial.
Bless.
Learning to swim took ages. Without a right leg, I had no opposite kick and for a long time, hit the pool wall every time. Eventually, after a number of black eyes and much embarrassment, I learned to balance my muscles and swim in a straight line.
Swimming helps the Arthritis too. Strengthens the muscles, improves fitness and reduces the gravitational pull of our lovely Planet.
Going out.
Going out or staying in; either way entertaining requires considerable planning.
If it is someone you want to impress, there can be no weakness. The true performance begins long before you get to the hair, make-up and which frock section. Imagine meeting someone and finding that they don't 'do illness'. It happens.
Very careful preparations. Bridget Jones and her choice of pants had it easy. Tiny or 'suck it all in', a simple choice that would be bliss for women with Arthritis and no doubt a number of men too.
For us, the choice begins early in the day. How much to do (movement, work, walking) without wearing ourselves to a single mille-feuille leaf , transparent, brittle and likely to end up with sauce on our faces?
The second is to time and balance the medication so as to appear as pain free and normal as possible but not high, asleep or lunatic, to be able to dance or move with some ease (and much grace) but not collapse within a few minutes.
Thirdly, if you're going for dinner, will the consumption of food slow down the rate at which the painkillers are absorbed, will sitting for too long leave you bent and mis-shaped, like a rejected Cadbury chocolate when you finally stand up, will you be able to have a glass of wine with all those meds, will refusing wine make you look like a prude?
Oh for the days when I simply wondered if my bum truly was big in that frock.
Will confessing put the mockers on?
Will a confession of 'Arthritis' put me in the 'too old' section? Whereas a nicely judged outfit, a good hair cut, false lashes will subtract years - does 'Arthritis' add them?
If so, we're screwed. We're aged before our time.
If it is someone you want to impress, there can be no weakness. The true performance begins long before you get to the hair, make-up and which frock section. Imagine meeting someone and finding that they don't 'do illness'. It happens.
Very careful preparations. Bridget Jones and her choice of pants had it easy. Tiny or 'suck it all in', a simple choice that would be bliss for women with Arthritis and no doubt a number of men too.
For us, the choice begins early in the day. How much to do (movement, work, walking) without wearing ourselves to a single mille-feuille leaf , transparent, brittle and likely to end up with sauce on our faces?
The second is to time and balance the medication so as to appear as pain free and normal as possible but not high, asleep or lunatic, to be able to dance or move with some ease (and much grace) but not collapse within a few minutes.
Thirdly, if you're going for dinner, will the consumption of food slow down the rate at which the painkillers are absorbed, will sitting for too long leave you bent and mis-shaped, like a rejected Cadbury chocolate when you finally stand up, will you be able to have a glass of wine with all those meds, will refusing wine make you look like a prude?
Oh for the days when I simply wondered if my bum truly was big in that frock.
Will confessing put the mockers on?
Will a confession of 'Arthritis' put me in the 'too old' section? Whereas a nicely judged outfit, a good hair cut, false lashes will subtract years - does 'Arthritis' add them?
If so, we're screwed. We're aged before our time.
Job Interview: how much to reveal?
Have been offered dream job interview at local college. Dream type job, much nearer home and great salary.
Staring down the barrel of a THR, I wonder if I am a 'good bet'? Would a company, if I chose to disclose it, feel I would be a 'bad risk', if I don't disclose it, am I breaking a law?
Who employs someone who could be on sick leave for several months?
Or do I accept the role (if offered) and postpone the THR for a year? Could I even last another year? My surgeon says no and that a wheelchair becons in six months if it is not done soon. Hmm.
Choices, choices.
Walking in with a cane or crutch, it's going to be obvious that something is amiss but how far is it legal and how far is it 'ethical' to go with disclosure?
Unfair to have to even consider this but consider it I must.
Life with Arthritis and a disability is a series of compromises; how far to go, can I get back again, can I park nearby, is it far to walk, how many times I day can I sneak out of the meeting to take medication without being seen, which dress can I wear with pockets or access to able the TENS unit cable to be secreted, if I do this today, will it interfere with tomorrows plans? The list is endless.
But if I can do the job (and I can), then is it wrong to reject me out of hand because I might get tired sometimes and need to sit down? Legally, yes, it is wrong; in practise, I'm not so sure. People have been 'not employed' for less.
According to the 'Human rights' legislation, they can't ask me anything until a job offer is made, so I think this is a suck it and see situation and definitely an occasion for a really good frock!
Let's hope they are employing me for my brains and not for my stamina.
People all over the world face this on a daily basis. They can't get a job because they are sick, they can't pay for treatment because they have no money. They have no money because they can't get a job, they can't get a job because they are sick ....
I have a job and it's a great one but this new one would be better. I want it.
New frock, extra painkillers on the day, TENS turned up to Latin Fever Rumba speed and a big smile plastered on the face.
Worry about the future, when it gets here.
Staring down the barrel of a THR, I wonder if I am a 'good bet'? Would a company, if I chose to disclose it, feel I would be a 'bad risk', if I don't disclose it, am I breaking a law?
Who employs someone who could be on sick leave for several months?
Or do I accept the role (if offered) and postpone the THR for a year? Could I even last another year? My surgeon says no and that a wheelchair becons in six months if it is not done soon. Hmm.
Choices, choices.
Walking in with a cane or crutch, it's going to be obvious that something is amiss but how far is it legal and how far is it 'ethical' to go with disclosure?
Unfair to have to even consider this but consider it I must.
Life with Arthritis and a disability is a series of compromises; how far to go, can I get back again, can I park nearby, is it far to walk, how many times I day can I sneak out of the meeting to take medication without being seen, which dress can I wear with pockets or access to able the TENS unit cable to be secreted, if I do this today, will it interfere with tomorrows plans? The list is endless.
But if I can do the job (and I can), then is it wrong to reject me out of hand because I might get tired sometimes and need to sit down? Legally, yes, it is wrong; in practise, I'm not so sure. People have been 'not employed' for less.
According to the 'Human rights' legislation, they can't ask me anything until a job offer is made, so I think this is a suck it and see situation and definitely an occasion for a really good frock!
Let's hope they are employing me for my brains and not for my stamina.
People all over the world face this on a daily basis. They can't get a job because they are sick, they can't pay for treatment because they have no money. They have no money because they can't get a job, they can't get a job because they are sick ....
I have a job and it's a great one but this new one would be better. I want it.
New frock, extra painkillers on the day, TENS turned up to Latin Fever Rumba speed and a big smile plastered on the face.
Worry about the future, when it gets here.
Ankles and the liver
Ooo, new sensation today. The Ankles. Not had this before and am curious.
Everytime I stand up, my ankle gives way - I haven't been skiing, boarding or cross country running for a while, even Fencing (take that you rotter, not enclosing sheep) has passed into history of late, so it can't be that. I wonder if it is 'referred pain'?
Referred pain has self-referred on many an occasion to the groin and my knee and occasionally has crept down the shin but never actually made 'ankle contact'.
It is a most peculiar sensation and reminds me of my ballet days when hours and hours on points would leave me with numb feet, no feeling below the ankles and a curious sensation of walking on painful clouds.
This is a good article on referred pain and it is interesting to see how many medical trainees don't believe in it. Hmm. Explains a lot.
Also had telephone call from the GP. Apparently, being on 50mg Diclofenac 3 times a day means I should have a Liver Function test every 6 months. Well, four years later, they've decided I need one. Obviously, they are about to have a drugs audit and have noticed I'm missing some data. Deep Joy. Score one for the slapdash.
Diclofenac is an NSAID and has a number of issues if you take it long term. Liver damage being one of them.
Others include rotting away of the stomach lining, for which I take Omniprazole a proton pump inhibitor, which has its own issues in turn.
Medicine is a little like the introduction of the Cane Toad. Cane toads were imported by the Australian Bureau of Sugar Experimental Stations to eat cane beetles which were costing farmers money in terms of lost crops. Now, the Cane Toads are a bigger problem than the beetles ever were and the whole thing is a cycle of ever increasing disaster.
Hmm. Reminds me of something :)
So off to the surgery, fortunately I work from home on a Monday, proffer the arm and blood is extracted to a test tube. Results by the end of the week I am informed. Given that I am not yellow, my alcohol consumption is generally average and I don't glow in the dark, things are probably ok but we'll wait and see.
Whilst there, I ask for a referral for an X ray on my ankle. Having only one leg has turned me into one of those 'helicopter mums' who shadow their precious object to ensure no harm can befall it.
The receptionist gives me the look that clearly implies I am using the NHS resouces at far too great a rate and taking more than my fair share. She indicates with the angle of her chin that when she loses her job in the next round of pay cuts, it will be entirely my fault. Thank goodness she doesn't know that my latest artificial leg cost £42,000 and will only last 5 years. Even thinking about it in her presence makes me feel guilty (mostly) but sometimes (pleased) when she is slow to answer the phone or a query :)
Secret knowledge. As a patient, there is little that is secret: blood, gases, health, habits, behaviours, even having your bottom looked at when they inspect your hip and don't even get me started on the indignities of child birth! It's good to have a secret - she'll never admit me to the surgery when the PCT accounts are published later this year :)
Everytime I stand up, my ankle gives way - I haven't been skiing, boarding or cross country running for a while, even Fencing (take that you rotter, not enclosing sheep) has passed into history of late, so it can't be that. I wonder if it is 'referred pain'?
Referred pain has self-referred on many an occasion to the groin and my knee and occasionally has crept down the shin but never actually made 'ankle contact'.
It is a most peculiar sensation and reminds me of my ballet days when hours and hours on points would leave me with numb feet, no feeling below the ankles and a curious sensation of walking on painful clouds.
This is a good article on referred pain and it is interesting to see how many medical trainees don't believe in it. Hmm. Explains a lot.
Also had telephone call from the GP. Apparently, being on 50mg Diclofenac 3 times a day means I should have a Liver Function test every 6 months. Well, four years later, they've decided I need one. Obviously, they are about to have a drugs audit and have noticed I'm missing some data. Deep Joy. Score one for the slapdash.
Diclofenac is an NSAID and has a number of issues if you take it long term. Liver damage being one of them.
Others include rotting away of the stomach lining, for which I take Omniprazole a proton pump inhibitor, which has its own issues in turn.
Medicine is a little like the introduction of the Cane Toad. Cane toads were imported by the Australian Bureau of Sugar Experimental Stations to eat cane beetles which were costing farmers money in terms of lost crops. Now, the Cane Toads are a bigger problem than the beetles ever were and the whole thing is a cycle of ever increasing disaster.
Hmm. Reminds me of something :)
So off to the surgery, fortunately I work from home on a Monday, proffer the arm and blood is extracted to a test tube. Results by the end of the week I am informed. Given that I am not yellow, my alcohol consumption is generally average and I don't glow in the dark, things are probably ok but we'll wait and see.
Whilst there, I ask for a referral for an X ray on my ankle. Having only one leg has turned me into one of those 'helicopter mums' who shadow their precious object to ensure no harm can befall it.
The receptionist gives me the look that clearly implies I am using the NHS resouces at far too great a rate and taking more than my fair share. She indicates with the angle of her chin that when she loses her job in the next round of pay cuts, it will be entirely my fault. Thank goodness she doesn't know that my latest artificial leg cost £42,000 and will only last 5 years. Even thinking about it in her presence makes me feel guilty (mostly) but sometimes (pleased) when she is slow to answer the phone or a query :)
Secret knowledge. As a patient, there is little that is secret: blood, gases, health, habits, behaviours, even having your bottom looked at when they inspect your hip and don't even get me started on the indignities of child birth! It's good to have a secret - she'll never admit me to the surgery when the PCT accounts are published later this year :)
Sunday 3 March 2013
Quantum Entanglements
So what is Arthritis and a THR?
There are many different forms of Arthritis, some dreadful in their manifestation and I have no idea how people cope with them. Fortunately, I have the simplest form, Osteoarthritis. Degeneration of joint cartilage and the underlying bone, most common from middle age onward but not always. Many get it at a very early age and there is no real answer why. Simplest guess would be 'genetics' and 'lifestyle' but mostly 'luck'.
Degeneration means, the cartilage (the duvet, spring or sponge that absorbs shock) wears away and leaves the bone exposed to damage.
A THR is a total hip replacement; a mechanical artifact, inserted into your body to replace the worn out parts. A partial Terminator, a partial 'I Robot', Heinlein fantasies mixed with current science. They also come in a multitude of guises, forms and methods. Some have been found to be dangerous, poisoning us with their leaking, seeping, insidious metallic fragments, some clunk, some work.
Already so many parts of me are buried in seperate graves that when I finally shuffle off, there will be multiple ceremonies across the country. I like that. Wakes Galore :) Present count is 4. How many more will I be able to celebrate; will there be enough of 'me' to bury, to still count as 'me'? A 'Nietzscheian' Question?
Is it wrong to celebrate the loss of a body part? To party; drink and dance on it's grave?
Doctors need to be more aware of the impact of Osteoarthritis. It is not a 'life threatening' illness but it is 'life limiting'. Prompt treatmeant and support should be standard but sadly isn't.
There are so many people affected by this; so cruel is the impact. Not in big ways; more like the Chinese Curse 'Death of 1000 cuts'. Each cut is paper thin but together, they build, interact like a Venn Diagram of Pain to limit life, limit freedom, limit our potential.
When you get home from work and your choices are; sit, sit or sit (if you're lucky) or no dinner as you're too exhausted to eat, or cook, clean and help family (my hats doffs to you) then life loses its gloss.
Women in particular with Arthritis apply more lip gloss, not just to their mouths, but to their lives as well. They are brave.
We perform; we act. Our life is a matinee. We deserve our Oscar.
There are many different forms of Arthritis, some dreadful in their manifestation and I have no idea how people cope with them. Fortunately, I have the simplest form, Osteoarthritis. Degeneration of joint cartilage and the underlying bone, most common from middle age onward but not always. Many get it at a very early age and there is no real answer why. Simplest guess would be 'genetics' and 'lifestyle' but mostly 'luck'.
Degeneration means, the cartilage (the duvet, spring or sponge that absorbs shock) wears away and leaves the bone exposed to damage.
A THR is a total hip replacement; a mechanical artifact, inserted into your body to replace the worn out parts. A partial Terminator, a partial 'I Robot', Heinlein fantasies mixed with current science. They also come in a multitude of guises, forms and methods. Some have been found to be dangerous, poisoning us with their leaking, seeping, insidious metallic fragments, some clunk, some work.
Already so many parts of me are buried in seperate graves that when I finally shuffle off, there will be multiple ceremonies across the country. I like that. Wakes Galore :) Present count is 4. How many more will I be able to celebrate; will there be enough of 'me' to bury, to still count as 'me'? A 'Nietzscheian' Question?
Is it wrong to celebrate the loss of a body part? To party; drink and dance on it's grave?
Doctors need to be more aware of the impact of Osteoarthritis. It is not a 'life threatening' illness but it is 'life limiting'. Prompt treatmeant and support should be standard but sadly isn't.
There are so many people affected by this; so cruel is the impact. Not in big ways; more like the Chinese Curse 'Death of 1000 cuts'. Each cut is paper thin but together, they build, interact like a Venn Diagram of Pain to limit life, limit freedom, limit our potential.
When you get home from work and your choices are; sit, sit or sit (if you're lucky) or no dinner as you're too exhausted to eat, or cook, clean and help family (my hats doffs to you) then life loses its gloss.
Women in particular with Arthritis apply more lip gloss, not just to their mouths, but to their lives as well. They are brave.
We perform; we act. Our life is a matinee. We deserve our Oscar.
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