Scoliosis


When I was in Primary school, the Government funded a scoliosis screening program, to pick up worrying curvatures early in a child’s life. At the time, I passed the screening with flying colours. Then, I broke my back. A few years later, after numerous surgeries, I was informed that my hip graft had failed, and I had scoliosis to such an extent that my heart, lungs and stomach were being crushed. Without major surgery, I would die. I was seventeen when I went into hospital to have this surgery. I had previously spent two years in a body brace, which unfortunately couldn’t save my spine, as the problem stemmed from the grafts failing. They at first opened my chest, somebody holding my heart whilst ribs were removed for grafting and put in via the front. Then I was turned over, and they operated on my spine, installing Harrington rods, screwed into place. I was later put in a fibreglass body cast.

 

 

My scoliosis was rectified enough to save my life, but the rods had to be taken out at twenty, and later fractures in my spine have seen the scoliosis worsen. I live with a monumental amount of pain now.

I worry when I see kids slouching, quite often unable to sit up straight with shoulders back. I am also concerned with the weight young people carry in their backpacks to and from school. It is as though they are carrying bricks around! It is essential that scoliosis is discovered early, before long-term damage is done, and requires surgery. It affects future pregnancies, the work you can do, and your general wellbeing.

My friend’s daughters were diagnosed early, and whilst they require bracing for a few years, they shouldn’t need any treatment beyond that. My friend has set up a petition, to urge our government to bring back screening within our schools. If we can prevent even one child from enduring hell later on, it is worth it.

You can sign the petition here.

 

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Frida, Tomatoes and Giving Pain Meaning


I had a hard time holding my newborn. When I was pregnant, I practiced carrying  a string bag filled with oranges, and a sack of potatoes. Weights and hydrotherapy also played an important role. When my daughter came along, I found it very difficult to hold her, and wrangling her as an active toddler was a challenge! Breaking my back again when she was three, saw me unable to carry her; even navigating a roundabout in the car would see me bite my lip to avoid screaming in agony.

I am a planner and think a great deal of the future. I guess when one has had so much out of their control, you grip onto that which you can have power over. My spine is a case in point. Working with weights each day and walking are things I can do to prepare for the future. I had researched spinal cord stimulation, and sought experts in this particular field. I was excited about the prospect of being able to cope as my back pain became more challenging (the fusion sites are already wearing out with age). I was so young when the damage happened, which means that preparations and reparations have to be considered now. I thought of my daughter as a teenager and young woman. I want to travel with her, and maybe one day be a hands-on grandmother to any children she may have. I want to be able to hold those babes in my arms. Unfortunately, a site of major damage is the thoracic region. Holding anything in my arms is agonizing. For a year, I harboured hope that spinal cord stimulation would help. It was to be my insurance policy; a nod to the next decades of life.

Last week, my daughter and I saw Evita at Sydney Opera House. It was a spectacular production, which left us spellbound. Tina Arena as Eva Peron, was stunning, and deserved the standing ovation which she received. My girl asked lots of questions about Argentina, and we researched it’s history online after we left. We stayed in Sydney overnight, having a leisurely brunch before seeing my spinal specialist. Armed with my latest test results,  I followed the doctor to his rooms, unaware of what was to come. I assumed we would be arranging to have a trial device implanted.  Spinal stenosis and fibrosis at the site of former surgeries meant that there isn’t adequate space to weave the wires through. I can’t even have epidural injections to manage the pain. Having surgery to place a stimulator would be far too hazardous, as it turned out. It was a lot to take in. It means I have to reimagine my future, and my daughter has to reimagine hers. Simple things like sitting or carrying luggage, going on long treks or long-haul flights will be that much more difficult.

I went home and cried. I watched the movie Frida, as I laid on my Frida cushions. It will be a reimagined future. I am doing everything in my power to keep my bones and muscles, kidneys, lungs and mind strong in preparation. There will be no hope of relief nor reprieve from the merciless pain. It shall always be there, a constant reminder of the brutality of my youth. It will limit what work I can take on, and how far I am able to drive. I will be damned if it limits what I can do with my daughter. She stubbornly took my suitcase off of me the other day, on our way to our hotel room, giggling as she ran ahead, despite my protestations. She reaches out her arm to me, and carries my backpack on her strong shoulders each and every day.

 

We shared the bus ride to RPA with an eloquent middle-aged gentleman who was homeless. He was Italian, and ate a tomato as though it were an apple. He reorganized his bag, and when he stood, he rolled deodorant under his armpits, before gifting the family opposite a drawing. He read a book on philosophy as he sat back down, finishing his tomato with relish. As we departed, he tipped his hat. I would love to know his story; I’m sure it is brimming with pathos and triumphs. The most remarkable stories are.

I have always been fascinated by birds, butterflies and dragonflies. How wondrous it would be, to have wings. For over half my life, I have been fused from my shoulders down, with  limited range of movement. I am grateful that I have been able to walk, and if my mobility were to cease tomorrow, there would be no lamentations. I just want (and need), to be well enough to see my daughter through to her adulthood.

For a moment, I regretted the time and money spent seeing specialists and having all of the tests done. What a monumental waste of a year! Then there was the matter of the space all of this took up in my brain. I had put things off ‘until after I had the device fitted.’ Ironically, as I reflect, I see that these days had only brought my daughter and I closer together. We had stayed in the city, walking and laughing in the rain. We brunched and cheered on street performers. We had been together, smart phones displaced from our hands. I found myself outside the Downing Centre courts, a place I had avoided since the court case I endured at sixteen, trying to get a bad man to pay for the vile things he had done. I stood outside for fifteen minutes, waiting for our bus. Lost in my thoughts, the Italian gent, tomato in hand, tipped his cap and we talked. Mental illness had robbed him of a lot, but not his heart. Physical injury had robbed me of a lot, though not my heart. For a moment, we were in simpatico. He gestured for my girl and I to board the bus before him, and I glanced out the window at the imposing courts. I had come back to retrieve that girl.

Perhaps, none of it was about a spinal cord stimulator. Perhaps it was to give me leave to spend quality time with my daughter. Maybe it was also about facing another piece of the past. Maybe it was to show me that I can organize travel and hotels and that I am enough for my daughter. I am the mum that she needs. Perhaps it was to affirm that I need to let go of fear. The worst has come and gone and I am still here. Maybe I was meant to meet the Italian fellow, and be encouraged to eat vine-ripened tomato’s as though they were apples. He even ate the stem, and I realized that nothing is ever wasted. The same is true with lives.

I have been referred to a physical therapist, and my specialist is going to review my case at the next practice meeting. As I reflect on the year gone by, I see no wastage. My daughter and I had experiences we would never have had, and seen parts of Sydney that we wouldn’t have. We have met magical people, been in magical shops, had magical food and stepped out of comfort zones. The only thing left to do is eat a tomato as though it were an apple.

 

Getting my back up


To get from my town into the city, I have to take a bus and then a train. I usually have a spinal brace on, and carry a lumbar roll wherever I go to place in the small of my back. I take pain relief beforehand. I can cope with the stiffness and discomfort quite well, but if something extra is required, it messes with my system and the trip home is hell. I have had times when I have been doubled over on the trip home-whether by car or public transport. I was taking a certain medication twice a day to help the sciatic pain and I must say, it kept me walking. However, it was rendering me a zombie in the mornings, and I craved bed so I could go back to sleep. I now take one dose at night time, and whilst the pain has crept back during the afternoons, at least I can function in the morning and get my daughter where she needs to go.

For over twenty years, I have been in extreme pain, though I can still recall a time when I wasnt. I remember what it was like to skate, dance and be flexible. I miss those times. I have learnt what I can do by discovering what I can’t; where my limits are. My days are structured to the letter. Morning weights to keep my bones strong, and physio exercises for my spine. Brace and Tens machine after a shower and liniment. Morning medications to help with pain and inflammation. Of an evening, I have a bath, my medications and am usually in bed by 8.30. The relief of laying flat at the end of a day! I wake several times with the pain during the night. If I am held up during the day, and can’t take my meds at the usual time, the pain gets out of control, and I am almost delirious because of it. I have to have excellent time management.

One day a few months ago, I was given a friend’s newborn baby to hold. I have difficulty lifting-even raising my arms is excruciating- and whilst I loved holding this precious bundle, I was in agony for days afterward. I resent that the pain limits my ability to lift a precious baby. When my daughter came along, I bought a crib that I could wheel around the house, lifting her onto my lap when I was in a rocking chair to avoid strain on my spine. If my baby ever has her own babies, I want my spine to be strong enough to do the same. This is one major reason I work so hard in the here and now on my back!

Sitting for any length of time is a challenge. All the weight goes to three dessicated discs in my lumbar spine. If I am sitting too long in one spot, the pain is out of this world. Laying down is the most comfortable position. I worry when I need to take long car rides or plane trips, as I know pain will be a companion. I just want to try and hold it together. I am on as little pain medication as I can get away with, acutely aware of the balance between being functional and not. Without it, I would hardly be able to walk, let alone get out. I have had a few incidents lately when my right leg simply wouldnt do as it was told. I fell over in a toy shop, and a dear lady raced over with my daughter to help me back up!

Most days I cope, but there are days that are so abysmal that I break down. I fear that the time has come to undertake corrective surgery to keep me going. Then, I come back from the abyss. I hope the centre holds for a little bit longer. I am not frightened of what lays ahead; I just want to be strong enough to hold my grandbabies one day.

 

Back Pain Sometimes isn’t Transient


My first surgeon informed me that I would be left in agony, over twenty years ago. Sitting would apparently cause me to weep after an hour, as would standing. Pretty much anything other than laying down would bring me to my knees. Sharp shards of bone, as well as metal artifacts are piercing into my spinal canal, causing a 50% reduction in the vital space. Despite this, I managed a pregnancy, and raising my daughter. I have traveled and have a demanding schedule every day. That surgeon was right; it does bring me to my knees.

I had to do a grocery shop the other day, and found my spine seizing up. There I was, draped over my trolley, groaning. My daughter didn’t bat an eyelid. She just asked what we needed and went to get it. She then loaded the bags into the trolley after I paid. I crawled into bed, and she made me toast for dinner. I lay there for fourteen hours, until I became concerned about the load on my kidneys and knew I had to catheterize.

The next morning was comical. I have a portable TENS Machine, which has proven to be gold. To my dismay, I couldn’t find it! I was rummaging through every drawer in the house in desperation. I finally sourced it, only to find the battery was dead! I could have cried. We had to go down the street to get a new battery. I had applied heat to my back, and a magical ointment, taken three different medications and put on my back brace before leaving home.

These are the things I adore. They make a real difference in my life. I have spent an obscene amount of money on things which have promised to relieve my back pain. I have done the magnets and fancy exercise equipment, the oils and potions. The tools below actually help. The degree to which they assist, depends on the day and the obscenity of the pain.

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A blessing in a hot bath at night.

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This was recommended to me by a scientist friend after I fell over and broke my back again six years ago. It can even be used on fracture sites.

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My portable TENS machine is my saving grace when out and about.

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Heat Pack. Needed throughout all the seasons!

I sometimes relay the severity of the pain and aftermath to people. I want to convey that I am not avoiding anyone, nor have I been in the space to answer messages, etc. It does irritate when people say that they hope I feel better soon. Honey, I am not going to feel better soon! I have pieces of bone and metal, similar to knife blades, sticking into my spinal canal! My fused spine is disintegrating, as are the grafts. It isn’t going to get better. I have accepted that. May I ask that you love me instead. Come over and have a cup of tea with me. Pour me a wine and commiserate. I don’t have a cold, which can be overcome.

I almost kissed the lady in our local bargain store, who upon viewing the little battery from my TENS machine, assured me they had one in stock. The relief! So I continue, as we all do. Broken yet somehow whole. Small and yet ever so tall.

MRI’s, a Painting and Pegs!


The period between school terms went by in a purple haze, taking with it, Prince. Fans woke in shock to hear the news of his passing last week. This year has taken so many individuals in the arts, and it’s only April! 

The holidays were divided between time at home, and being out. My daughter caught up with a few of her gorgeous friends, and it made my heart soar to witness the bonds deepening. The girls put down their electronic devices and made up dances and spells, plays and songs. We also went to plays, including The Peasant Prince, and Cautionary Tales for Children at the Sydney Opera House. It starred the extraordinary Virginia Gay. She held my daughter spellbound.

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I was gifted these divine bird pegs by a friend. I have written about this friend before. A nurse, she has had health issues the past few years, and has astounded me yet again, by putting her hand up to support a local lady as she flies to Singapore. This young lady has MS, and her symptoms have escalated. She has gone to Singapore for intensive chemotherapy and stem cell treatment. I am thinking of both these valiant women. They will be in my heart every time I peg an item on my clothes line.
 My friend Diana Reynolds is an artist, and she gifted my daughter and I this enchanted painting. It has pride of place in our home school room, where we get to admire it daily. To check out more of Diana’s work, click here.

My MRI results weren’t what I wanted them to be. I had hoped to receive a procedure known as a discogram, to shrink my remaining discs. It was found that they had all desiccated, which explains why I wince every time a bus or car I am travelling in hits a bump. I have no shock-absorbers! I wish it were merely a case of changing the shock-pads! There are many more issues, which I have neither the time or inclination to see to at the moment. I only had one day in bed throughout the holidays, so I am relieved. I carried on, throughout social occasions sometimes with the aid of a stiff drink and for that I am grateful. It is a nasty, merciless agony, which has grown into a monster. I humour it; I temper its fury and I promise it the world if it will just let me do what I need to do. When my daughter is  a little older, I will have that longed-for overhaul. I will admire the bird pegs, and the symbolism behind them. They have the ability to fly, and yet they are anchored. Perhaps it’s a comfort, behind grounded. They know that they have a choice.

Term 2 has just begin in Sydney, and I look forward to many more adventures. You could live for a thousand years and still not experience all that there is in this world. I had a conversation with a friend who is extremely ill. She told me her simple wishes for the next year or so. In light of her disclosure, I am going to apply for a passport. Life is too damned short and it flies by like a bird unanchored. Pain and illness, nor nothing else is going to stop the experience of new horizons. It mustn’t.

Simply Red


I love surprises of the pleasant kind! A dear friend texted me to ask if I wanted to go see Simply Red at the State Theatre. She had free tickets given to her by her DJ sister. Her sister lives in London, and had arranged it from there! Now my friend had a very bad car accident a few years ago, and had many injuries, including a broken back. She is in constant pain. My reaction to this lovely offer was the same as hers had been. We both thought of the practicalities of getting in there, and whether we would be able to stay awake until the set finished at 11pm. We worried about our pain levels escalating, and how we would feel the next day. We checked in with each other the day of the concert, and we resolved to go. To hell with the consequences! Now came a comedy of errors. We found parking under a popular city landmark, and I alighted the car with my trusty walking stick. My friend went to retrieve hers, only to find that the only aid she had was a hefty three-legger with a folding seat!

  
We went to the lift, only to find that we couldn’t go through the shopping centre. We saw security manning the business foyer, and we both burst into peals of laughter upon discovering that the escalators weren’t working and were cordoned off. We had no choice but to walk up the steep stairs alongside. We asked how on earth we could get out, and the security guy said that he would push a button to make the lift go up. Outside, we were completely discombobulated. We are city gals, and know our way around, but our pain-addled, weary minds couldn’t get it together. We punched ‘State Theatre’ into our smart phones. Well, the bloody things took us in the wrong direction, a fact that only dawned on us after a block or so! We put the phones away and relied on our wits. After a  stiff drink, we arrived!

  

 By the time we got to the theatre, we were late, and Simply Red were on. We were guided to the VIP area, which happened to be in the lowest section of the grand old theatre (which didn’t have a lift). We laughed some more as we negotiated our way down many steep stairs. I am sure Mick Hucknall looked straight at us as we hobbled along to our seats. Our tricky bladders were up to their usual mischief and we had to find a loo at differing times. I had forgotten just how pure and emotive Mick Hucknall’s voice was, and man, the band were in fine form. We moved in our seats, performing our unique interpretation of dance. We squeezed each others hands, thrilled that we had gotten here and were doing this. It was a celebration of having survived, for her and I. It was an act of defiance of the pain we will have forever. We were sneering in the face of exhaustion and depression. We were simply two women out on the town, listening to the sublime Simply Red.

I noted my friend’s jaw tightening toward the end, and I asked if she was ready to go. She nodded, knowing that I knew all-too-well, and she didn’t need to conceal her discomfort. We quietly left, walking through Pitt St Mall and to the carpark. We once again had to walk up to security, in order to operate the lift. We then had to negotiate our way around the cords and machines that the cleaners were using. We chatted all the way home, mostly about who we had been before our spines were broken, and then about our wonderful kids. We talked of the joy of sleeping for four hours straight, and what a rarity it was. It was a gift of grace, being in the company of a soul sister, one for whom no words are necessary. We laughed at the same time upon seeing more stairs and barriers. We knew when each other had reached our threshold. We grumbled about uneven paths and sticky-out objects blocking our way. Mick Hucknall, if you happened to look in our direction as we were leaving early, I can assure you that we had an extraordinary time in your company. Your music was the perfect accompaniment to a night of revelry for two ladies with damaged spines. We left on a sweet note, to your dulcet voice caressing our ears.

Spoons


Usually I am okay with the delegation of my spoons. You know, the ones those with relentless pain are given each day? You only get a few, so need to use them wisely. My daughter has started a program in the theatre. She absolutely loves it, and it has been a pleasure to transport her there. The other day though, I was still recovering from the pneumonia. Several nights of relentless coughing had made my spine excruciating, and my chest burnt. When one is running out of spoons, the promise of rest, of laying supine is tantalizing. ‘Ten minutes walk to the station, then an hour on the train. Once you round the corner to home, you can rest,’ I promised myself. Ha! There was a work vehicle outside, and a fellow cutting up steel. Yes, tonight is a splendid night to do several hours of building work, whilst your dog barks incessantly and your whole family hollers a metre or so from my home.

I am usually a considered person, not prone to losing the plot, but this particular night I did. It wasn’t much on the angry scale, but for me (who hates confrontation), it was spectacular! The pain escalated, and the noise was phenomenal. Now when one has no spoons left, one can get a bit beside oneself. I drank red wine, and turned up my stereo. I played Sam Smith at full volume. I paced. Pain makes one agitated. The only thing that helps me is silence and rest. I went through my list of strategies. Hot bath, liniments, Tens Machine, brace, etc. It has taken me a few days to gather more spoons. Every event has to have a break in between, each outing meticulously planned. Sometimes the best strategies can be brought down by the actions of others. The good news is I survived, and the noisy people have been introduced to Sam Smith, Indie Artists, The Old Married Couple and many more. Don’t mess with an overtaxed lady who is in excruciating pain! They were very fortunate that I was restrained and didn’t shove my collection of rusty and warped old spoons where the sun doesn’t shine!

My Spine, Part 2.


When I broke my spine again, I had a small child to look after. I should have been on bed rest, followed by bracing and possibly in a plaster jacket as well. When driving, I would psyche myself to go through a roundabout, as the pain would make me scream when I turned the wheel. Once a week my daughter would go to occasional care, and I would crawl back into bed. ABC kids was a godsend in the months that followed. I had to take heavy-duty painkillers, and relied on buses to ferry us about as driving was out for the most part. My daughter and I danced in a coordinated manner, and she would help me in so many ways. It made our bond stronger, and she reflected the enormous pride she felt in assisting me. I could either sink or swim, and my child kept me buoyant. Pneumonia followed, as I couldn’t breathe from the base of my lungs. Home Care sent a dear soul to clean up my house once a week. I looked out the front window, and saw an elderly lady struggling up the three steps to the front door. She would groan, trying to vacuum and wince when she mopped. We ended up having cups of tea on her visits, she regaling me with stories of days gone by. I couldn’t put her to work!

Body cast at 17 years.
Body cast at 17 years.

My local neurosurgeon says that he cant operate for pain relief, as it simply wouldn’t help. When structurally I am unable to walk, or breathe, then we will go in. He encouraged me on my last visit, telling me I am doing a good job. I have to keep moving, and exercise every day. Whether it be a walk, swim or visit to the gym, it helps. I feel connected to a body I spend quite a bit of time attempting to escape. I do weights, and work out on the cross trainer, as it doesn’t provoke agony afterward. A scientist friend put me onto Zen Spray by Martin and Pleasance after I broke my back again. I find it helpful, and it can be used on fracture sites. I have a lumbar brace, which holds me together and provides some comfort. I use a walking stick, as without it, I fall over, particularly when tired. I have learnt not to compare my days with others. Anything accomplished, whether it be sitting at my desk, or pegging up washing, is a triumph. I take medication to help with the pain at night so I can catch a few hours sleep, and if I have a busy day coming up, I have to plan for it. That means resting before and after, just laying flat, and pain killers. I have a TENS machine, which I use frequently, and wintergreen oil helps soothe the arthritis.

I will be trialling new hormones to compensate the bone loss in the next few months, and seeing my neurosurgeon at St Vincent’s. I feel blessed. When I suffered the breaks through the thoracic region, my right arm couldn’t be lifted high, and I suffered constant tingling. It is somewhat better, enough that I can write and grip things. Positive self-talk is a must for the mornings I crawl to the bathroom. “You can do this!” I insist. When I am out and the pain ramps up, I work out how much longer I have to be upright before I can rest. Funnily, it helps. “Almost there!”

One wrong move, or carrying too much weight, and I can feel (and hear), the scaffolding go. I have come home from grocery shopping in agony, which nothing tempers. Relaxation music and meditative cds are a blessing as I try to escape the pain at night. Bowen therapy has also been a help when the pain isn’t acute. It is worth trying to maintain your mobility and limit the daily pain. I know what it is like to feel helpless, to have pain drag you down. I know what it is like to feel isolated, removed from the wonderful things going on outside you. Be kind to yourself, surrender when you need to, and do something that shall help you feel good. It is a mental battle, living with pain. Be your best advocate.