The Most Wuthering Heights Day Ever!


My daughter and I and some dear friends went to Sydney Park last Saturday to pay homage to Kate Bush, whilst at the same time, denouncing domestic violence. I used to listen to Wuthering Heights as a young girl, living under the oppressive understanding that a violent and possessive man would be deciding when my life would end in the near future. I didn’t have to imagine him telling me that I was ‘going to lose the fight,’ nor have ‘bad dreams in the night.’ He told me routinely, and I indeed had bad dreams. I imagined coming back dressed in red, banging on the window, trying to get somebody (anybody), to hear me and welcome me in. Never in my wildest dreams would I have envisioned joining so many others, dressed in red, dancing to this song so many years later! It was a powerful remembrance of how far I have come, watching my little girl twirl by my side. St Peters has a special place in my heart. I was a young poet/artist when I lived there, selling my wares to the little shops up King St. I would take my little dog, Mitzi Winstopple to Sydney Park each evening, and dream of the future.

In preparation, I raided our fancy dress box and my daughter found a 50 cent gown that fitted her beautifully.

It was cathartic, and I felt cleansed. We wandered up King St to the Union Pub, where scores of other Cathy’s gathered. We bought felt hats for $10 at a bargain store, and I told my friend of my life in St Peters, and the sadness I felt at leaving. I came back not only to pay homage to Kate Bush, but to retrieve something I had left behind; myself.

The next day, I paid for my dance. I wept with the pain, but it was worth it. If there is a price to be paid, always make sure it’s worth it. Two days later, my spine is coming good. I can’t wait until next year!

 

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.

 

Update on Health Services


Remember how I wrote about my friend and her admittance to hospital? Well, she came to my place after having pathology done, and over a cup of tea, there were many tears, borne of frustration and overwhelm. She works as a casual with the elderly, and if she doesn’t work, she doesn’t get paid, so she has had to pick up as many shifts as she can. The specialist who ordered her scans wanted them done before the end of this week as he is going away on a conference Friday for two weeks. She tried to book in, and found that she will have to wait a month! Three sections of her spine shall need to be done as well as a brain MRI. She knows that her symptoms are a sign of something amiss, and as you can imagine, is desperate to find out what. It seems incredibly cruel to make a person wait for answers when they still have to work and somehow function in the interim.

She missed a call from her GP the other day as her phone dips out where she lives. She was let out of hospital with a severe headache and many symptoms to fend for herself. By prolonging diagnosis and treatment, the health system actually loses money. It makes no sense! It was made clear to her that if she was willing to pay for the MRI’s, she could have them done immediately. Unfortunately, she doesn’t have the thousands of dollars this would necessitate. Being in a private health fund means nothing in this circumstance. It shouldn’t be this way. My job as her friend is to help keep her spirits up whilst she waits.

Why can’t our Health Service be Streamlined?


A friend of mine almost lost her life as a teenager when she came down with Guillain-Barré Syndrome. It has left her with long-term problems, which saw her admitted to hospital a few days ago. She was due to have an MRI so the doctors could gain an understanding as to what was happening neurologically, but at the last moment, it was cancelled, much to the frustration of both my friend and her specialist. It was a Friday afternoon and radiology had a backlog. She ended up being discharged, and asked to make her own arrangements for the MRI and a nerve conduction test. Now this lady is a single mother with no family support, and lives quite a way out-of-town.

This scenario seems to be common in the Australian health care system, and one can feel overwhelmed, attempting to deal with it all alone. Ideally, these tests would be done in hospital, and once the specialists know what is going on, the patient would be sent home with that knowledge, and hopefully ongoing support.

It is incredibly confusing, navigating our system! On the one hand, pathology may be free when requested by a GP rather than a specialist and on the other, scans may be charged when requested by a GP rather than a specialist. If attending appointments alone, you are likely to forget to ask pertinent questions, and incredibly likely to not retain important information. Having an advocate with you is important! I would like to see a system where the person is asked before discharge what support systems are in place when they get home. How far from town do they live? Do they have transportation? If the answers are in the negative, keep them in hospital to have the tests done in-house. My friend works incredibly hard, and I have been worried about her health for some time. Instead of having answers last Friday, she has been left to organize the tests herself, with a lengthy wait in the interim. We need a better system than the one we have.

I would rather walk…


She is the type of woman who sweeps over you from the feet up, criticising everything from your shoes to your handbag. She makes your daughter uncomfortable with her relentless grilling, and you feel exhausted by her relentless whining. You are never asked about yourself; how you are and what is happening in your world. You aren’t asked because it doesn’t matter to her. On a gorgeous morning, there you are, minding your business at the bus stop, when she comes along, insisting on sitting near you the whole journey. By the end, you have lost all your energy, and feel discombobulated. Its probably not a good portent, when you spot a person and inwardly groan.

The other day, I was waiting for a bus home after seeing my doctor. My spine was excruciating; lifting my arm had encouraged metal shards in my spinal canal  to give a sensation like being stabbed between my shoulder blades. It had taken five different medications to get a few hours sleep the night before. I just wanted to sit in silence, and get home.

Suddenly, she appeared, like a vulture. She immediately noticed that I had cut my hair. “What happened to you!” she demanded, pointing at my head. “I felt like a change,” I replied sharply. “Why would you do that? Why?” she hollered. And in 5, 4, 3, 2, 1 the critique was coming. Bugger this! In desperation, I hopped on a bus that would take me several blocks from my place, rather than right outside my home. It was worth the extra walk, to get away from her. I am starting to understand that I have rights too. A right to peace of mind, quiet, and to be respected. I dont have to be polite and sit there and take such nonsense. All my energy has to be shared with my daughter and I will be damned if I will allow the likes of her to syphon it away with dribble. Not anymore. The look on her face when I suddenly hopped away and onto the bus was priceless.

When you wake up from a fitful sleep, you tend to have around half of the vigour needed to get through a busy day. If you subject yourself to miserable people, the tank gets drained further. Dont do it! Move or walk away from anyone who pulls this toxic stunt!

 

Be Vulnerable


I learnt an important lesson this past week. Life had become extraordinarily busy; happily due to wondrous events, and I was delighted to share photos and details with my friends. I was less enthusiastic to share information about my foot. How I would be curled up in a ball due to the pain, both before and after surgery. I wouldn’t let my daughter see the wound, nor anyone else. It was a large crater. It was all well and good to pronounce that I was in the city, going about business, and share pictures of places and smiles and happiness. I found it hard to articulate how my foot felt at the end of the day, and the challenge of getting bandages off which were fused to the wound. How every step was excruciating.

On Sunday, I took a picture of the site, to see how it was healing. Despite all internal objections, I shared the pic. A friend and her husband have a podiatry practice, and she made contact. They organized for me to go to the local high-risk foot clinic, and an appointment was made for that very day! Everything from my circulation to neuropathy was tested. The podiatrist made me a cushioned insole to place in my shoe, did some work on my foot, dressed it appropriately and gave me supplies to ensure it healed well. With glucose intolerance and a nerve deficit, I was at greater risk for infections, etc.

I went from a stoic woman who felt she had to do everything alone, to allowing a group of people to help me, and it was humbling. It was hard to share the photo of my foot, as it felt I was making myself vulnerable. I felt silly; people didn’t want nor need to see a gruesome image! However, friends assume you are doing well, when all they see are happy snaps. By allowing them to see another side to my life, I was able to receive the help  I desperately needed. A big lesson was learned! Being vulnerable is a risky business, but so is stubbornly trying to do it all on your own. There are wonderful people in this world, willing to help. All you need do is ask.

March into Yellow for Endometriosis Month


I visited a friend on the other side of Sydney recently,after receiving a message. She had been suffering excruciating pelvic pains, and tests had revealed that she has extensive endometriosis. I made a massage blend to provide comfort to her abdomen and lower back, and grabbed my folder filled with reams of information- gathered from a decade of research-to give to her. Her story is sadly common amongst endometriosis sufferers. She started her periods early, and from the start, they were excruciating. She was misdiagnosed as having IBS, and the resulting diet and medication did nothing to alleviate her symptoms. To make matters worse, she had extensive adhesions, as a result of a burst appendix at eleven. A laparascopy had been ordered, and though they found a mass of endometriosis, they failed to tackle it. As a busy mum, it had now gotten to the point where her quality of life was massively impacted, and something had to be done. She has endured twenty years of seeing doctors, being prescribed the pill to alleviate the cramps, been misdiagnosed, having nothing show up on ultrasounds, and then diagnosed without treatment. She is facing huge costs in order for a gynacologist who doesnt specifically specialize in endometriosis to have “a go” at operating.

My endometriosis journey began at age eleven, when my periods started. They were excruciating and a gynacologist put me on the pill, which did nothing to help. The disease didn’t show up in ultrasounds, and it was suggested that I had a phobia regarding my periods, and was ‘hysterical!’ For at least two weeks every month, I was in agony, and often had to go to hospital for pain relief. I was desperate for somebody to understand, and tell me what on earth was happening. I felt very alone. Endometriosis was suggested when I was twenty, and I was given a shot of a drug made with progesterone. I was told that it was one of my only options to preserve my fertility. The next year was hell. I bled profusely, my stomach swelled and I had continual pelvic pain and migraines.

Twelve years ago, I sought the opinion of an orthopaedic surgeon about my lower back pain. My spine had been severely damaged at fifteen, and I had quite a few operations on my back to keep me walking. After I explained that the back pain became unbearable the week before my period, and started to ease the week after, it was suggested that I may have endometriosis. I was referred to a gynacologist, and he booked me in for a laparoscopy. During the lap, the disease was found throughout my pelvis, in balls the size of oranges. This doctor burnt off the disease. When I went back to him for the post-op consult, I was doubled over in pain. He told me that I was fixed, and disregarded my concerns about my fertility and ongoing pain. He wrote a script for the pill and sent me on my way. I collapsed a month later, and sought out an endometriosis specialist. When he operated, he found scores of blood-filled cysts and extensive disease underneath the scarring (the aftermath of some of the disease being burnt off). He had to perform a radical excision of the endometriosis, to seperate it from my uterosacral ligaments and ureter, amongst many places.

Straight afterward, I decided to start IVF, as it was the optimal time, whilst I had a clear pelvis. Once again, I faced ignorance regarding endometriosis, and was put on drugs that encouraged it to grow at lightning speed. I had to be carried into emergency and was put in the maternity ward for two weeks, whilst they treated me. I was told that these particular drugs were like pouring fuel onto the disease and striking a match. I changed clinics, and with a different drug protocol, I flourished. Despite only getting one follicle, I fell pregnant and my daughter was born. I was so used to being in a great deal of pain, that I had no idea that I was in the late stages of labor when I finally went to hospital! Apparently, that is quite common with women suffering endometriosis.

When my daughter was a few months old, the disease came back with a vengeance, and I had extensive surgery. When she was three, I had another operation, and nearly lost my life. I was taken back to theatre after I bled out, and had life-saving surgery. As a result of the trauma, I went into early menopause. It has been an arduous, lonely journey, and I would hope that pelvic pain in girls is now taken seriously. Endometriosis should be suspected if a girl complains of severe period pain. Go straight to a gynacologist who specializes in endometriosis. The difference in outcomes can be astounding. My friend is saving to have the surgery to give her back her life. Even with being in a private health fund, the out-of-pocket costs can be in the thousands. I stored my daughter’s cord-blood when she was born, such was my terror that she may be diagnosed with the disease one day. It gives me peace of mind that her cord-blood may one day prove useful in the event of an endometriosis diagnosis. For further information, go to the Endometriosis Association of Australia Facebook Page. March is Endometriosis Awareness month, and it’s colour is yellow. Let’s paint the town this sunny hue, living in hope that our little girls never have to suffer in the manner their mothers and grandmothers did.

Surrender


Surrender is  tough, particularly if you are a control freak! I had been having trouble with pain in the sole of my foot, but was mindful of money over the Christmas period. My doctor is excellent, but charges over the Medicare Rebate. I needed new scripts, and thought about asking about my foot, though decided against it. It would have meant a short consult would be billed as a long one, and I was on a budget! I didn’t know whether to laugh or cry when I was billed the higher fee anyway on my way out. When it got to the point where I couldn’t walk without agony, and my spine was affected, I sought help from a GP who bulk-billed. X-rays and Ultrasounds led me to a surgeon. I was given a gift, by meeting this remarkable human. He scheduled my surgery,and then the consult was spent with him regaling me with stories from his remarkable life. He had come to Australia to study medicine, and he talked of how he felt stuck between worlds when he went back to his native country. He talked about when he first started his practice, and was invited to a property for dinner with his family. There was a sign out the front, saying ‘Animal Kingdom’. It certainly was! When his kids went into the living room, they were delighted to see a kangaroo sitting on the sofa, watching TV!

I have lost count of all the operations I have had; all I know is that there wasn’t room on the hospital form to list them all! This foot surgery wasn’t the worst of them, that’s for sure. Mind you, I don’t think I ever fully appreciated what an essential job one’s feet play until now. The stuff we take for granted is mind-blowing. We hold on so tight in our lives, to people, places and circumstances, as though through willpower alone, we can control the outcomes. I have always loved the feeling of release, when I am put under. I can feel myself slipping away from consciousness, and yet it is a relief rather than something to fear. I can let go for a little bit, and let the theatre staff (with their eclectic taste in music), take over.

Before the anaesthetist came, my surgeon showed me a collection of photographs he had shot throughout the years on his Iphone. He had taken up photography after his wife had died, and the images made me well up. There were pictures of zebras, waratahs and spiders and it were as if seeing them for the first time, from another level. He remarked that people fail to stop and see what is in front of them; the beauty and terror. He is right. So much of our life is spent trying to avoid big feelings, and ignoring beauty. Maybe I can learn to stop a little more. Maybe I can learn to release and surrender, without having an anaesthetic. Perhaps each second of the day doesn’t have to be accounted for. I want to see waratahs and zebras from a different light too. If a busy surgeon can find time to stop and surrender, surely I can.

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Come as you are, See me as I am


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My daughter’s Godfather is Reverend Bill Crews, an icon in Sydney, admired for The Exodus Foundation and The Bill Crews Charitable Trust. At the end of a service at the Uniting Church in Ashfield, we all hold hands, forming a circle. In part, he says the following “come, come as you are… This is not the door of hopelessness. It doesn’t matter what age you are, what sex you are, who you are or what you’ve done.” We all feel it. A bunch of eccentrics, poets, misfits and empaths, we feel that we can indeed come as we are. The ego is a silly thing, misguided and sometimes seeing to it that we neglect opportunities. Neglected, because at that particular time, we don’t feel 100%…Our house is a mess, we lack the funds to put on a fancy spread for dinner, we need a haircut or we feel we need to present better before having people over… I didn’t think I had allowed my ego to misguide me, but I certainly had! I have planned dinners in my head, and am waiting for the perfect opportunity. I have planned to have people over, then neglected to actually invite them! I look back and in all honesty,  perfect gatherings were unscripted. I have drunk cheap wine out of jam jars, and had a drizzle of olive oil on bread with friends by candlelight, vying for space amongst magazines and cushions. Those nights were sublime and unforgettable.

I have a problem with my right foot (where nerve damage has occurred from my spinal injuries), and am having surgery next week. In spite of this, each day I have showered, done my hair and put fresh clothes on. I have cleaned my home, and put everything in its place. Last weekend, the pain got the best of me, and I had heavy-duty painkillers and put myself to bed, where I stayed. Sunday, I was surrounded by empty bottles of water, clothes and medicines strewn all over the floor, the Sunday papers covering the bed. I was still in my pajamas, and looked a sight with unbrushed hair and teeth. Of course, this was the day that a friend I haven’t seen in ages came for an impromptu visit. She didn’t bat an eyelid at the chaos; rather she got herself a chair and sat by my bedside. I didn’t feel self-conscious; she had come as she was, and so had I! It actually felt good, to visually demonstrate the chaos that was happening within. I felt authentic, un-judged and valued. She not only tread through the detritus when my mask fell, she also gifted me this magnificent umbrella!

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Apparently, it had spoken to her at the shops, and she knew she had to buy it for me! We avoided niceties, delving into the deepest parts of our lives and the society in which we live. My friend gifted me a reminder to stop the avoidance of extending invitations to people because my life/house isn’t perfect that day/week. No life, house or veneer ever is, and those whom love you don’t give a flying fig about any of that. They will step over the clothes strewn on the floor to reach you. Come as you are.

 

Parades and Time


I am behind on finishing my next book, behind on finishing scheduled articles and behind on my blog. I was anxious about all this, until I remembered that everything has a season. Term 4 has been jam-packed with activities, all of them joyous, though time-consuming. I wake at 5am, and get into the day. The Lyrica I take twice daily (as well as other meds for pain), see me crawl into bed by 8pm most nights. By the time the homeschooling activities are done, there is just enough time for dinner and preparing for the next day. My daughter is a bundle of energy, and when I put it to her that if we worked hard this term, we may be able to finish a little earlier, she readily agreed! Another two weeks, and we shall be done. We will have time to explore, to see friends and rest. Oh, and I shall have time to write regularly!

There have been trips to the theatre, parks and beaches. We went to Sculptures by the Sea, which was fantastic.

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We took part in a parade, my daughter as a Scottish warrior, resplendant with a sword, and I as some sort of wench! We had a ball, and as I watched my daughter and her friends brandish their swords, I felt pride.

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We made scores of felt angels and lavender balm for a home school market, have been to numerous workshops and traveled far and wide. The days have been busy, though good. Summer is almost here, and it is time for a break. My daughter will still be learning as she plays and writes scripts with her friends, summons up new songs to sing and performs science experiments at home. Every life has a season, and now is the time of writing.