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.

Gnome Convention


On the 26th January, the Gnome Convention was held at Glenbrook Park. This annual event is put on by the Rotary Club of the lower Blue Mountains and we look forward to it all year!

 

 

It is whimsy at it’s best. We were entertained by the extraordinary bush poet, Greg North. If you haven’t experienced his act, you are missing out! Check him out here! img_0553

Brendan Kerin had us enthralled with not only his music, but stories. Did you know that the Didgeridoo’s actual name is Yidaki? It originated from the top half of Australia and was named the Didgeridoo later on as that is the sound it seemingly makes.

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We bought Gnome Hats, and had a grand time amongst the gnomes and fairies. It is my birthday today, and I bought this delightful Green Man incense burner (the smoke comes out of his head) for $15. We all need whimsy in our lives, and knowing that the money raised goes to charity is extra incentive to get your gnoming game on!

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Felting with The Magic Weave


I had the privelage of meeting two of the warmest and gentlest people at the beginning of the year. Cristina is a felt artist from Chile who met her beau in a wondrous collision of fate, and together, they run The Magic Weave. They asked me up to The Creative Arts Centre in Glenbrook to partake in needle felting recently. Though I was excited, I was worried my non-existent sewing skills may let me down. To my delight, there was no sewing required! It was meditative, working the fibres with the needle, before turning them into gnomes, snowmen and angels. Cristina had the packs ready and waiting, and the whole process was like witnessing magic!

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There is such joy in learning a new craft, and I must say, I never knew I could be skilled with a needle and pile of wool and felt! Cristina and her partner, Frank, are excellent teachers. If I can pick it up in a few hours, so can you! I hope you get the opportunity to visit them in the lower Blue Mountains and catch one of their classes.

The glorious Cristina
The glorious Cristina

 

 

October


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The face of Luna Park, Sydney Town Hall and the State Library were all lit up for Light it Red for Dyslexia week. My daughter and I met many fantastic families, and had a fabulous time walking through Sydney.

There needs to be more awareness, more funding and more provisions within our schools. The time for change is now!

We got to see the floats ready to parade for Taronga Zoo’s 100 year celebrations on the same night.

There was a trip to Wendy Whitely’s Secret Garden at Lavender Bay.

A friend who suffered early-onset breast cancer held a fundraiser to help finance a breast-care nurse in a regional area. As she so poignantly said, many women find themselves several hours from their homes and families, and these angels are the only comfort they consistently have. They are imperative.

Spring in Sydney is a sight to behold, it’s inhabitants treasures.

Flower Markets, Pie shops and Friendship


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Some time back, I went through a hellish week. I hadn’t endured such concentrated crap for quite a while. Unpleasant people from the past tried to sneak back into my atmosphere via social media, money that I was assured would be there to pay essential bills wasn’t, and I was devastated by other events beyond my control. “What on earth is this?” I shrieked, to nobody in particular. “I’m a good person!” The week before, I had been blissfully unaware of the universal dump that was about to be bestowed on me. I wasn’t at all prepared. The thing with trying times, is that they are often beyond our control, but not our capabilities, despite stretching us to our limits.

I knew that I was in strife when I couldn’t stop my arms from trembling, and my hands from shaking. I lost my appetite and three kilograms in a weekend. I was exhausted and longed to rest my thumping head. I was on the loo constantly, my digestive system unable to cope with the stress. My heart felt as though it was leaping out of my chest, and I felt numb; disassociated from what was occurring. All the above were symptomatic of the massive adrenaline rush I was enduring. I couldn’t articulate what I was going through, and so I retreated. I didn’t want to burden anybody, anyway. I longed to disappear. I couldn’t see a way out of the situation I was facing. I felt I had let my daughter down, even though events had been out of my control.

There was a little tap at my door. A friend had been working around the corner and had called in to see me. My eyes were rimmed red from crying and sleep deprivation. Upon seeing me, she held me close, then took me for a drive. We stopped at a pie shop off the beaten track, and I ordered a vegetable pie. They began to make our pies, and we were shown to a round table, the linen tablecloth and colored serviettes adding warmth to a chilly day. There were flowers on each table,nestled in bright vases, and we enjoyed the best pies of our lives. The pastry was flaky, and the filling had just the right amount of seasoning. Afterward, my friend took me to a flower market. We were allowed in the cool rooms, and admired the floral displays. My daughter was asked if she wanted to pick out some flowers to take home with her, and her little face lit up. The dear lady who was running the farm even let us look out the back to see where the gerberas were growing in massive irrigated sheds. Watching my daughter play with the little dog on the farm, I felt the oppression of the past week loosen. The lady at the flower market was gracious to this stranger, and I am sure she could sense that I was fragile on this day. As for my friend, well, she did more for me than she will ever know. She enabled me to escape my own mind, gifting me temporary reprieve.

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The next 24 hours, saw two other good friends call in, and I cried some more as I relayed the impossible situation I faced. What they gave me in terms of support, love and compassion outweighs anything I could calculate. They are indeed my sisters, and they effectively pulled me back from the abyss, and helped me seek ways to continue on. You can feel overwhelmed when a friend is facing a crisis, particularly when lacking funds, time or the health to physically assist.Let me assure you, that real friends understand all that. I equally treasure the cup of tea I was made, a friend opening her house to me, the phone call I received and the heartfelt messages I was gifted. Just knowing that you aren’t alone is enough to sustain you, and bring you clarity. Each and every kindness shall be recalled and valued always.


I still haven’t any resolutions to long-standing burdens, but at least I have a list of steps I can take, right here and now. I feel a little more empowered, and certainly stronger than I did throughout that horrific weekend. It all started with a country drive, a quaint pie shop and a flower market.

Felting with The Magic Weave


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I had always loved felting, and longed to learn how to do it. It was one of those things you have a curiosity about, and throw on your bucket list. After twenty years of hankering, I finally had the opportunity to do something about it! There I was at the Gnome Convention in January,when I felt pulled toward a market stall, selling the most beautiful felt angels and castles. I got talking to the felt artist, Cristina, and she offered to come to my home to hold a workshop. I turned over her details many times, keeping the slip of paper on my desk. Life was busy as usual, and I became annoyed with myself as the weeks passed. I had to get over my mental block, and stop seeing holding a workshop as an indulgence. It’s silly, the limits we put on ourselves! I contacted Cristina, and a date was arranged.

Cristina and her partner, Frank, came early one Sunday morning, and I felt as though I had known them forever, such was the ease of our conversation. The other attendees arrived, and we began. We concentrated on wet felting. I felt the stress leave my body as I arranged felt onto a line of bubble wrap. There were no other thoughts, nor anything to do, other than gently playing with the fibers, in order to make them compliant to being styled. The ladies shared experiences and laughed as we rolled our precious bundles of wet felt.

It was a tremendous thrill to make something with our own hands! Hands which spend their days working, gardening, hugging, picking up after others, cleaning and generally being of service. Those hands were on their own time, and they were creating pretty and colorful felting! We shared stories, and our eyes welled up upon hearing Frank and Cristina’s  love story.

Cristina also showed us how to make flowers, balls and jewelry. It is the start of a beautiful friendship, and I am going to attend more of her workshops in the future. To see what all the excitement is about, visit Cristina’s Etsy shop.

I was able to take what I learned and show my daughter, much to Cristina’s delight. It is her dearest wish that her knowledge be passed on and the art of felting continue for a very long time. Seek out an artist at your local markets and adopt them! It is one of the best things I have ever done!

 

Raphaela’s Picks of the Week


Here is what transported, transfixed and transcended the everyday this past week.

A hummingbird dress. I want one!

We are in the midst of floods in Sydney at the moment. The following advice is important if one finds oneself on a flooded road!

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Vintage Clothing and a Ballerina!  https://www.buzzfeed.com/xmonix/this-ballerina-is-mixing-ballet-with-vintage-2efu6

Raphaela’s picks from the Internet this week.


Things I have found inspiring throughout the week. Look at this fellow below!

A fabulous article on Sydney’s Vivid Festival by Elissa Blake. If you are planning to go, read this first!

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Hello Kitty Café, Friends and Sydney


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Sydney in Autumn is a sight to behold. We walked around to drama, dodging trucks and construction of the light installations for Vivid, which starts this weekend. There were buskers and tour groups taking in the history of The Rocks. My daughter has a ritual before her class. I give her money and she buys a strawberry donut from a takeaway shop at Circular Quay. The elderly Vietnamese man sees her approach, and has the donut in the bag before she asks. My daughter says they are the best donuts in the world. We weave our way through wedding parties and photographers, my daughter entranced by the gowns, but grossed out by the romance and smooching. I call our day in the city my caffeine day. When you have such extraordinary coffee and barista’s at your disposal, why wouldn’t you indulge? To redeem myself, I order the best salad in Sydney. Spoilt for choice, it is hard to settle on one, and they are a triumph of assembly. The sort that you wouldn’t bother making yourself at home, unless you had a spare hour or so.

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Scenes such as the one above take my mind off my physical pain. Thank heavens my daughter’s balance is better than mine! On this particular day, I decided to travel over the Harbour Bridge on the train, to see friends. I insisted we try the quirky Hello Kitty Café at Chatswood.

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My friend and I are under the care of an endocrinologist. Both of us are sugar-impaired, shall we say, and we try to behave. This was something of our last hurrah on that front, which is just as well.

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Yes, I drank/ate the Freak Milkshake above, and was suitably buzzing and silly afterward! To my delight, they had a tofu burger on the menu.

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It was a sweet little café, and we enjoyed our outing. It has taken me two days to get over our big day out, but you gotta live, right? I had seen this place had opened over a year ago, and determined to go one day and check it out. It niggles at you, doesn’t it? The events you miss and promise to get to the next year, the things you want to do and people you want to see. Sometimes you just have to do it. We are looking forward to the next adventure! Sydney is brimming with them!

A Jar of Marbles


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We had seen a video on how to make fairy lanterns, and went to a discount store to find the jars, tissue paper and glitter required for our project. I had felt the need to apply a mixture of turquoise, blue and purple to my hair. Now, when you front up amongst a crowd in a quirky manner, certain people gravitate to you. The artists, the poets, the dreamers…They see in you a kindred spirit. I stood in front of an aisle of craft supplies, discombobulated at the wide array, uncertain of which to choose. I noted a lady facing the same conundrum, next to my daughter and I, and smiled at her sympathetically. She was tall, with bohemian clothing and a funky short hairdo. “Excuse me,” she said, “could you help me?” She had a bag of marbles in one hand and a jar in the other. “Do you think these will fit in this jar?” “Afraid not, especially the bigger marbles,” I replied. She explained that somebody very dear to her was facing a deluge of sorrow, and was hanging on by a spindle. They had expressed that they were afraid they were losing their marbles. “I want to present them with their marbles,” the woman stated. “I need them to know that I care; that what is taken can be replaced.” I squeezed her hand. “You are a good person.”

I guess my fairy lanterns are also thematic. Here are these little fairies, highlighted with a background light, illuminating the way.  When I was in the clinic as a teenager, I was privy to many stories. I recall that the term PTSD was rarely used back then. It was called ‘the horrors’ instead. I was fourteen, and quite naïve. I became friends with a gentle fellow called Denis. He was kind and funny, and also severely traumatized. He quietly told me that he had been a vet. “How wonderful! I love animals,” I smiled. “Bless you, kid,” he laughed. I learnt over time what he actually meant as I heard him scream throughout the night; witnessed him slip into catatonia for days on end. I was told I had a strong mind, which bounced back like an elastic band, no matter what I was enduring. I wasn’t even clinically depressed, according to the experts. Rather, I railed against cruelty and abuse, to the extent that I would prefer to leave this world than remain in suspended animation. As my own PTSD began, I thought about Denis often, how despite our generation gap, we had this horrendous condition in common.

My mind takes me to dark places and I regularly fall into deep depression. None is more surprised  than I. I am a genuinely happy soul, who can seemingly bounce back from anything life hurls at me. I call myself a smiling, laughing depressive. I have been around long enough to understand what my triggers are, and try my best to avoid them. I have a delayed reaction to triggers. I may explode a day or two later. I need time alone to process what has transpired. Alcohol is a no-go zone at such times, as it leads to dreadful melancholy when I already feel low. I have to get out in the fresh air and walk. I have to turn off the phone and not have too much stimulation. Now is the time to get out my first aid kit. It contains ambient music, books, exercise, essential oils, candles, soup, a fruit platter, gardening, art, writing, playing with my daughter, the theatre and retreat. I am a happy woman with a tortured soul. It is quite the dichotomy. I have had to save my life many times over. There have been mountains that have seemed unconquerable; events too awful at first glance to be survivable. I have had to make that choice.

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There is hope beckoning to me outside the bramble where I lay. There always has been. I cut through the brackets to reach my friends, and my life. Life as a smiling, laughing depressive can be confusing. It is concealed from other people, and felt behind the scenes. “You are always smiling and appear happy darling,” an elderly friend once said, “but I see the sadness in your eyes when you think nobody is looking.” I told her she was far too perceptive. I think my spirit animal is the phoenix. Ignited by passion and a love of life, and consumed by the same. Perishing and emerging in an endless cycle. You can be the most positive, joyous person around, and still be pursued by depression and anxiety. The two states eye each other off warily. As long as you have a jar of marbles, you will never lose your own. My fairy lanterns are visible proof of an illumination inside my mind which can never be extinguished, despite the odds.

We are stronger than we believe we are, and can survive what we thought we couldn’t. We are also fragile, and deserving of kindness. If you have been through trauma, your brain has been left battered and bruised. It needs love and time set aside in its quest for reparation. I can’t help being an extroverted introvert. It’s who I am. I love people, and socializing and I also adore being alone. The same is true for being a smiling depressive. I love this life, and have had to reconcile the fact I was almost destroyed by it. My path isn’t paved, and nor is it straight. At least I have my lantern to light my way.

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