Tag Archives: pelvic fusion

Bionic Woman X Her.ie

Today I am featured on Her.ie talking about body confidence. According to latest reports, up to 40% of us have problems accepting the way we look. We strive for an unrealistic and ‘perfect’ image of what the human body ought to look like. Thanks to the overwhelming sea of social media that keeps us afloat, we push our bodies to the limit to achieve these impossible body goals that are both impractical and undesirable. We want the tiniest waist, the smallest nose, and the peachiest bum: but how about giving your own unique body the love and care it deserves?

(to watch the video click HERE)

People often tell me how confident I am in myself, but beneath my courageous front was once a timid and anxious girl. I thought I was ugly. Since my teens I have struggled to accept the body that I was unfavourably given. I remember getting my body cast after my first operation -a Plaster-Paris cast that went around my entire torso- and walking down the street with my mam feeling like a monster. Everyone else was wearing the latest crop-tops while I had to buy t-shirts that were three sizes too big to cover my hideous cast. Holidays were a nightmare, especially at the beach or by the pool: if children weren’t staring and pointing, then their parents were.

Shopping was a disaster – I hated dressing-rooms because of the mirrors and lights. Clothes never fitted me correctly, and I didn’t want to see how deformed I was from the back, and I often left feeling totally depressed about it.

Because of the health challenges I have faced (and continue to face), and all the times that my body has had to go through recovery, I’ve learned to love my twisted little body. And now I wear my scars with pride because they not only tell a story, but they show how brave I’ve been the past ten years.

#EnjoyYourBody

Link: http://www.her.ie/life/her-say-the-bionic-woman/237173

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Bionic womam: my twist on life *part 1*

So last night I uploaded my very first video about my journey with Scoliosis and my surgeries and that. I don’t have access to editing equipment until Monday so I’ll make it up in the next installment where I’ll show you all my iMovie/Premier Pro mad skillz.

#EnjoyYourBody

Recovery 3.0

I know self-praise is no praise, but I feel I have deserved a tremendous pat on the back for passing the 6 month mark since my last operation. The manner in which millions of damaged cells, nerves, and muscle fibres are able to regain vitality after such brutal tearing, pulling and cutting is truly fascinating; the human body is an otherworldly entity.

Only now is my body able to catch up with my mind and allow the realisation to set in; I’m a mentally abled 21 year old who cannot bend forward, backwards, left, or right, who cannot run or jump or partake in anything strenuous really. You cannot imagine the constant disgruntlement I have towards my situation; and yet it is nothing compared to the billions of children who are riddle with HIV, who have lost limbs after accidentally stepping onto a mine field, or who struggle to achieve basic human rights. But I cannot fairly compare myself to these children because we live worlds-apart. We are lucky enough to have an adapting society that caters for the harsh injustices in the world, and a relatively safe one.

Since entering my adult life it has becoming increasingly difficult to cope with having a “disability”; a difficulty which has been heightened drastically since I have been left unable to work since January 2014. I use the term “disability” lightly; I have accepted that I am a disabled person but the Irish state has failed to see this and has neglected my plea for help. After emailing a certain Labour councillor twice with no response, I decided to call him. My first call was rejected and the second went to voicemail. This was over three weeks ago, I have heard nothing yet. I am only one of thousands of children and adults that don’t receive the appropriate support and help for illness or disability. Where is the justice?

On a brighter note, Pilates has proved a good remedy to regain some flexibility; I can’t do certain poses and flexes but the one’s that I can do seem to be working well! My time now is mostly spent managing pain and trying to get on with college life. I am still trying to gain weight- I haven’t gained any since the operation and the large pins in my hips are starting to protrude through my skin; not very comfortable as you can imagine and its painful sitting on hard chairs or anything stiff.

I’m keeping as positive as I can though, and have been in touch with Scoliosis Ireland who are helping other people like me get the help they need. Don’t ever let a disability or illness define who you are or what you can do. Mind over matter always.

#EnjoyYourLife

Cultured Cuppa

I, am Optimus Spine

Its Saturday night, a bank holiday at that, and I’m on the couch doing physio for my back. Pull your chin to your chest, straighten knee, turn ankle inward. Repeat. Almost five months post-op now and time has definitely not flown by. I was doing great; emphasis on the ‘was’.

I’m naturally sporty and athletic, so staying fit is always a concern of mine- something which is completely over-shadowed by my selfish body. I was ready to get back to normality within weeks of surgery, but my body was screaming for rest. I was back walking 5-6km within the first two months, and I was feeling ecstatic! Until the fatigue hit me like a truck. It felt like some extra-terrestrial presence was forcing me to lie down and close my eyes. This happens to me most day’s now- even if I am just in town for coffee with friends. So if it seems like you’re boring me to sleep, chances are, you probably are…. Heh. No, it’s the fatigue.

I started physiotherapy this week, for the first time since my diagnosis in 2007. Primarily its to help release some tension in my hips and legs and to loosen the nerves and muscles. It’s becoming very painful to walk and sometimes feels like I’m being electrocuted with every step. I have always been used to having metal in my back but it is a totally different sensation in my hips. I have been told to gain some weight since surgery which is a lot easier said than done let me tell you! I eat a lot anyway- just healthy food (as I sit here eating mighty munch). This hasn’t been very successful and the screws in my hips are starting to surface to my skin; not something I want going away on holidays! I have an MRI soon enough to tell me if the leg pain is related to metal pinching a nerve. Cross your fingers for me! Hopefully the metal is fine or else me nerves will be gone! (get eh???)

On a brighter note, going through the airport on Wednesday should be tonnes of fun!(I’m off to Rome). I may be built like a transformer now, but a few rods and screws wont stop me. I, am Optimus Spine.

Is it party time yet?
 Love,
CulturedCuppa

Bionic woman: my twist on life

I try and use this space to share with you the best of the creative minds around our lovely city, but I want to share my story with you. This is not a sob story; but a bit of education and awareness.

Imaging waking up one morning to find your body has been twisted out of shape.

This is no rip-off horror story. The year is 2007, I was a thirteen year old tom-boy and I had been out playing football on the road the night before. I had as normal an up-bringing as the next person; living in a mad house with three brothers. It was Saturday morning and before my shower I stood looking at my skinny body in the mirror, picking out every little lump and bump to criticise. I noticed I was standing crooked; my shoulders and hips did not align and had a predominant hump on my upper back. I was completely crooked. My mum placed me on her bed and with her finger, she traced down my spine. To her horror, my spine had completely twisted over the other side of my body; I had miraculously felt no pain at all.

Left: my spine after my second surgery. Right: my spine after my third surgery

Left: my spine after my second surgery. Right: my spine after my third surgery

I was diagnosed with acute Idiopathic Scoliosis. Scoliosis is a condition that causes the spine to grow not straight, but to curve into an ‘s’ shape. The word Idiopathic simply means ‘unknown’ because there is no significant reason why the spine does this. Scoliosis is a rare condition that effects only 2 per cent of the population- mostly effecting girls during puberty. Doctors are under the influence that my body took a massive growth spurt while I was sleeping. My spine extended but had nowhere to go in my small body. Everybody has a natural curve of around 20 degrees in our spines- it’s what gives us our flexibility. Overnight, my spine twisted to over 70 degrees. I had such a deformity that clothes did not fit me and I could not carry a school bag. Treatment for Scoliosis can vary depending on the curve- Spinal fusion surgery is currently recommended when curve magnitude exceeds 40–45 degrees. Anything below this in children will require bracing so that the body pulls the spine back into place. I was due to have routine spinal fusion surgery to correct the curvature of my spine. It involved screwing titanium rods on each side of my spine which would support and correct the curve. However, not everything went to plan.

When the second rod was in place it hit a vital nerve which left me paralysed and caused me to lose every ounce of blood in my body. Eight litres of blood was pumped back into me. Thankfully, the power was restored to my arms and legs but I was now left with one limp rod connected to my spine, instead of two. The failure rate for these operations are very low- with one in every 500,000 failing. I just got lucky. Nine hours later, I woke up disorientated after being transferred to a hospital which had a superior intensive care unit. Recovery was hard; you have to learn how to walk, sit and even go to the toilet again. I was completely reliant on other people. I also had to wear a plaster-paris cast around my torso for six months. It was utter hell and unbearably itchy. I got on with my life and eight months later I was back in school and carrying on with teenage life. However to my disappointment, my one supporting rod snapped one day while I was on a trampoline. It was only when my parents noticed my curve returning that we realised something was not right.

I had a revision of spinal fusion in 2011, where the broken rod was mended and extended down to my lower spine. However no risks were taken, and it was decided to not try place another rod on the opposite side to avoid paralyses again. At seventeen, surgery was not what I wanted. With my leaving cert approaching, school became a misery. I now had to go through the process of learning to walk for a third time- trust me, it isn’t any easier. Thankfully there was no cast this time! You have to think positive though, I just wanted to live like a normal teenage girl. Life after two spinal surgeries was not too bad- I went back playing sports and returned to my one passion- horse riding. With my leaving cert complete I was now looking forward to college and life ahead of me. Yet I constantly suffered with pain which debilitated me. I received epidural injections every 2-3 months into my spine to relieve pain- but to no avail. My spine was leaning too far to the left side of my body, and my discs were crumbling away to nothing. Taking a lot of heavy medication did not help either.

At 20, I now had to make the decision to have further surgery or live in constant pain, unable to work and study.
On March 11th 2014 I had my third spinal surgery. This time however, I had my entire spine fused to my pelvis. This involved placing two more rods down from my spine into my pelvis- limiting my movement completely, not to mention leaving me with a scar that extends from the top of my spine to my bum. I am one of only a handful of people who have had this surgery in Ireland- and indeed the world.

March 2014- just minutes after waking up from surgery

March 2014- just minutes after waking up from surgery

walking for the first time after my third surgery

walking for the first time after my third surgery

I have very limited movement; I cannot, and may not ever, bend forward. That means I cannot do simple tasks like tie my own shoes, and routine stuff like going to bed becomes a chore. My whole body is stiff and rigid and I’m pretty damn uncomfortable, but it could be worse. Recovery is long and any twenty year old just wants to look forward to going away and music festivals and staying out all night- but I have a long road ahead of me. You know what they say; third time lucky. Without a doubt, this experience has molded me in becoming a better person with a completely different out-look on life; it’s for living. Besides, my body has just under ten thousand euro worth of titanium and steel in it- jealous? For now, I am focusing on recovering and finishing my degree as a journalist, and becoming best friends with Anna Wintour.

My spine after my third operation, with more than 8 thousand euro of equipment in my back

My spine after my third operation,  with more than 8 thousand euro worth  of equipment in my back

 

Scoliosis can be easily detected with routine checks of your spine by your physician. It is important to maintain correct posture when sitting and walking; especially in children. A sign to detect early scoliosis in children is to see how their clothes fall on their bodies: a simple but effective way of checking. This year, Ireland is hosting its second annual World Scoliosis Day on June 28th to raise awareness of the debilitating condition.

Love, Cultured Cuppa

#EnjoyYourCity