My roller coaster ride has been full of emotions...but it's one hell of a ride, and am holding on..

How do we share the blessings bestowed upon us... how do we say Thank you ....

I never knew how to repay the many people that have blessed me with thier presence thier time , care, filling up our fridge, garden, flower pots and love...

 

Three months to be exact, my life took a turn... for the better or for the worse is questionable, in hindsight it was for the better.. For without  this experience, I wouldn't have learnt how to count my blessings, how to listen to my body, how to let go of the negative and take in the positives, to fully comprehend the love my family have for me, and to see the friends that cared about and lifted me up... I truly saw and understood the value and the meaning of the world 'angels'

 

These three months have been a whirlwind of emotions, from feeling great to feeling ugly, from feeling positive to hitting rock bottom, from being around family and friends to being my own best friend, and from having looking like I was, to a sudden change in it all...

 

The most hardest thing to grasp at the moment, I think is the sudden change in my life . The changes in my routines, the extent to what I can handle, and the chronic fatigue. But what has also come out of it is, the threshold I have for pain, the extent to which I have learnt about people, the ability to know my self worth, the ability to breathe and let things go, the fresh set of eyes to see beyond appearance and a new found appreciation for my family and circle of friends...

 

There comes a time in life I think, when we all go through something, dramatically life changing, some of us in the latter part, some of us at a younger age.. either way, it opens our eyes ...  It is a matter of choosing to see the roses amongst the thorns or the thorns amongst the roses as Abraham Lincoln said..

 

I think each decision we make, comes with an impact. a consequence, I know that some decisions I made, in my younger days made a great impact on my life, and I had to face the challenges it threw. If I had the chance to tell my teenage self something, it would be is to be strong...nothing else, not change anything. but "Be strong, you are stronger than you know"....A challenge can only break you if you let it... and looking back on the past few years, I have faced many a life changing issues, decisions I've made and lessons I have learnt, that have made me to who I am today..

 

One of them was fighting depression.. In the recent past, I spent a few months, letting the black dog plague my life.. I suffered with the decisions I made, I felt an overwhelming sense of sadness and not being able to find contentment with anything I did... but I had to take the challenge into my hands, ask God for his guidance and make some life changing alterations!, ... find my passion, find a place and head space that lets me live my passion out - daily, find my inner calmness and get to know myself a whole lot more...and learn that I can only adjust my own sails, and no one else's ... that puts a new spin on life...and do away with negativity..

 

 today, I vow never to go down that downward spiral again. I fight daily, specially when the spirits are low and when I have a look in the mirror... and see what has become of me.. when miracles are bestowed upon you and good happens, the force of bad fights with it too... it's probably the balance of the universe I am not entirely sure, but I have learnt with the good forces also come the bad.. we need identify and filter it out. ..

 

But 3 months on, the shock doesn't get any lesser... 

but one thing does, instead of counting the scars, and seeing the burns I see the blessings .. I see them lessen I seem my hair growing out, and I see my strength coming back. Some days I go backwards, but my mother by my side, daily in spirit, my family, my friends that uplift me and a partner that is extremely tolerant, with God's grace I am getting there..

 

So, how do we say Thank you to the blessings we receive a thousand fold, when the world comes crashing down... We be grateful... we learn to give back the same blessings we get, and we share another's burden and we find it in our hearts to empathize more.. The hundreds of people that have come to my aid, when I lay helpless , burnt fighting for my life. . I will forever hold you up in my hearts with utmost gratitude and respect..

And I will pour out everything in me, of my talents, my time, my love and my compassion, my faith to say Thank you..I hope reading how far a distance this journey haa s brought me is encouragement for you to keep being the blessing you are. .

 

My experience has been nothing short of an amazing roller coaster ride, this is how I can describe it best. There are days I wake up in anticipation of the thrill and the beautiful view I might see at the top, the beautiful people I see and the beauty of nature... from the top of that ride, or the climb upto it,

but there are days that I am also faced with the fall from the top and the downward journey, but as scary as it maybe and I may scream sometimes, I can also lift my hands up in the air, in relief and happiness, knowing that a God that is faithful will stick by me, and the people sitting next to me, in this ride have stuck by me and put up with my journey so far... there's no looking back now, but forward... This journey I will share with you now, from the day I started off, and an example of the journey so far, the rapid recovery, a lady that has been with me on this journey from the moment I fell ill..my mother. .who sacrifices many a things for my happiness. .. a journey from where I was...

Thank you to all of you that follow this.  My aspiration is that it helps another. .

I am learning getting burnt is not so bad after all!  It clears out all the impurities makes way for a new beginning. .

so if you are going through the fire rise up and shine bright!  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Make friends with yourself, your inner being, not your outward appearance...it's one way to get through this journey...

Yesterday was a beautiful spring day in Melbourne, the sun was shinning through the trees you could feel the warmth and it was such serenity looking out my kitchen window.. I felt a sense of summer ....

Although I wasn't feeling 100% , I thought I should put on a nice summer dress, sit outside and enjoy the beauty nature has given me... and so I did ,I got my dress out  and to my surprise it hit me again, that my body has changed so much... my skin was scarred and I can't dress for a usual summer day, in usual summer clothing, I still have to be very cautious, because my burnt skin was exposed.. I also again, realized the loss of my long hair and that brought me to tears.. I felt like I had lost a very important part of me, I very much was attached to... I never in my wildest dreams would have cut my hair off, and often have nightmares of how I look, or dreams that my hair has grown back.. this is definitely something that keeps playing in my sub conscious mind.. coming to terms with the changes my body is going through is a daily battle...I felt like I didn't recognize myself, and to be honest I didn't... I felt like I didn't look like 'all the others' and I felt like Cameron might even be ashamed to walk with me, because of how different I looked...It made me feel more aware of my skin, my hair, my eyes, my sensitivity to everything around me, and my 'image'..

But I took a step back and realized, yes I don't recognize myself? who am I turning into...? I don't recognize my outer self, but am starting to make friends with my inner being and soul... I am starting to make best friends with myself...and that is truly vital in order to get through this journey...

Often we get carried away by the 'image', the idea of how we are supposed to look, to this world, how we will be accepted, and we held down by a bondage, we are limited by what boundaries people set for us.. . There are certain, traits in life that we should live by and cultivate, good manners, kindness, love, honesty, respect, sharing and giving, support and empathy.. these basic human characteristics make us better people, not how we should look, or what our status in life is. that define us....Our ambitions, goals, dreams and paths can all be varied and different, and just because I am taking another path to reach my happiness doesn't  mean I won't get there, it just means my journey is different...

Often we tend to take first impressions or judgements on how people look straight away and this experience has taught me to shake that habit off.. to shake off passing judgement on people, period. or that don't conform to the idea of 'normal' or 'good looking'.. we are all equals in this world, be it rich or poor, famous or not... we all should have equal rights too...(which, sadly doesn't happen in this world) Finding contentment and peace with our decisions is what leads us to cultivating the habit of happiness...

I have learnt and am still learning, that we need to surround ourselves with a whole lot of positive energy.. thoughts and people.. If a certain thing worries or stresses us out, there is no point in letting it rent space in your head, or thoughts, it destroys your inner peace. Walk away from it, and give yourself the permission to do so...

Also learning to not let the idea of image and materialistic things affect us, in a way that it affects our self-esteem.

At the end of this experience I encountered yesterday,  I learnt to hold my chin up, feel comfortable within, hold my centre, go outside into our backyard and have a lovely meal with Cameron, who has accepted me at my worst. and finds and connects to the happiness I share with him, from within.... Always keep your head up they say, if not you may miss out on seeing the blessings bestowed upon you.. And blessings be it or not, for the moment am happy, who knows if it will last forever, but I will enjoy it while it lasts... and that's how it will be.. Living in the moment

Even to the rest of the world that pass judgement,  the only frame of mind, that may get us through, is this is me at the moment. and am learning to be content with "living in my new skin" literally, but skin in this context may not only be that, it can be a frame of mind, a new way of living, your journey..... Sometimes, in life we might be disfigured due to something that happened to us, we maybe born like that, it might be through our own doing, or we may feel inferior  and we may even be emotionally disfigured and scarred. .. However, we can't expect people to show us respect or love, if we don't show it to our own selves.. first.. 

Accepting the way we are and the way we look each day is not a weakness, but merely a way of embracing each day with all it's beauty..

As I learn and experience I write, so it may strengthen and help someone else, somewhere out there in the world..

One of my pictures will show you the hair that was cut off during my time in the hospital, and literally was my attachment, a temporary attachment, like my skin that peeled off, etc these are all temporary things we tend to hold on to, as a part of our image.. as a part of what completes us, and sadly some hold on to monetary compensation, as a part of their complete image too. Sometimes what we humans fail to understand is that these are all so temporary and can be removed from us in a blink of an eye, literally ( I can vouch for this). These don't and never will complete us, only we can complete ourselves...  So make friends with yourself, and your God.. learn that all these can be stripped off you and all you can be left with is your soul.... Your inner strength .. All we go to the grave with, are also these... not our bank accounts or our looks... So maintain that inner calmness, peace and happiness wherever your journey may lead you, and to all else that is negative and not good for your soul to grow, leave it behind...

I fall, I fall all the time and even more so now, but the difference is I have a different lens on now, I used to wear the lens of why me, or get sad, and upset. Now I have a new set of eyes, eyes to only see the good in whatever may come my way, skin that feels all the sensitivities around me, and also the love and comfort I receive...that negates all the bad I feel.. and a inner being that recognizes this happened to me within reason, and that reason is bigger than I can see or comprehend... and that this journey will lead me to a place I have always, always wanted to go to..

My journey to find inner strength, continues daily...Our blessings are forever flowing, we keep experiencing God's love and the love of human beings on a daily basis...Keep reading this blog to find out more about these and the battles I fight, they may help you in your journey....

For those of you who have contacted me regarding my blog, I thank you, you give me reason to keep sharing, and that is one of my greatest joys in life...


 

Each moment I am grateful and thankful, my heart runs over with more reasons to be a grateful cheerful soul...

Each and every time we open our fridge I feel so very blessed. . Because each time my food supply is nearing its end,  some beautiful soul comes with food and fills it up...each time my cup feels empty my heart feels low and I seem to be sad, my cup runs over with gratefulness from the beauty this world offers me...

 

Let me share some of these touching stories with you. .

 

I had lost touch with a friend of mine for a few years ... but, one day she had found out that I was critically ill and by this stage I was back home when she had heard of my fate, she called me up. And all she said was what do you need?. ..

From then on this 'uplifting angel' as I will call her in my blog stood with me in this journey She said she will hold my hand through it, and that gave me immense strength... She made a promise to my mum, before she left,  that she would always be there for me. ..Every journey she made to my house by train she carries a bag filled with goodies for me.. she even searched high and low for a plant that would do me good. ..I believe this person is here for me through it all because she has been through a rough patch in life. . And she feels my pain I suppose. .she inquires about me daily and is a true blessing..

I still can't fully comprehend how blessed my family and I have been to meet such extraordinary people along our journey.  People we didn't know or have never met before, met our every need. .. My dear family that surrounded me near and far praying and crying with my family. ..

 

I fondly recall all the times my family has helped people in need. .. in various ways. .and we have never ever done with the hope of getting back in return but we were blessed a thousand fold. ..

 

It's like a plant, you put seeds in the soil and nurture it with fertilizer, water, and some tender loving care, it sprouts out with beautiful harvest.... Likewise in life, you put in love, care, time with humility and genuinely you reap the benefits, but we must never do with the hope of getting in return...But even those friendships I haven't fully nurtured bloomed out for me, that shows even though there might be bad and we believe this world to be a bad place, there is hope, and solace knowing there is good out there...

  

I've learnt you have to give out to the world of your time, love,  talents and genuinely want to help..give without question. .and the universe and God, look after you in ways unimaginable. .

 

We never for once expect anything back in return. But to date, people never seem to stop amazing me. with their kindness, Cameron and I have tasted so many different cuisines, of food due to people just showering us with more and more of their love.. we have seen and visited homes filled with love and, experienced more love in our own home..

People drive far distances with boxes of food, thier concern and love. .thier prayers. .Friends my mum hasn't seen in years that came to her aid. Friends I hadn't heard or kept in touch with the that were there when my world came crashing down... ..

 

My blog today is to honor these people. . Each and every one of them. .
And when you give .. give without question give without reason... and you'll definitely be able to count your blessings each day...

Each day if we wake up positively with a thankful heart. .Our lives will be transformed. .

 

I can't be grateful enough that God has given me this challenge, and trial and that's how some may see it for me. But each and ever day I see it as my blessing, my blessing to learn so much in life, to see how blessed I am to be surrounded with love, to learn so much in such a short span of time and to find a strength I never knew existed. With all things in life, we can choose how we react. We can stand up to the challenge, be thankful and see our blessings flow in or we can sit down, feel sad and see the challenge take over us...

I thank you each and every one of you, for daily lifting me out of falling into that dark place..

 

Thank you my friends and family who have been true angels...in turn I will be there for you every step of the way...

 

My blog will soon explore further experiences I have been facing and how shedding the old skin, for a brand new, is something we should all do at some point... it adds a whole new perspective to life..

 

 

I will not allow the fears of my being, destroy the stillness of my soul...

Fear… fear of death, fear of falling ill, fear of losing someone we love, fear of not being successful or good enough, fear of change….. these are all fears that run through our minds quite often..

Today, I was plagued by the fear of side effects of Steven Johnson Syndrome… something just told me to read up in further detail as to what this condition does to you: and here is a list, for those that dare to read it:

Alopecia , Asthma
Blindness
Cataracts, Chronic Bronchitis, Chronic Cough, Chronic Fatigue Syndrome
Chronic Obstructive Pulmonary Disease (COPD), Chronic Pain, Cold Sensitivity
Corneal Ulcerations and abrasions
Depression, Dermatitis, Diabetes Mellitus
Dry eye syndrome, Esophageal Strictures
Excessive tearing due to dry eye syndrome
Fibromyalgia, Fluctuating Vision
Gastrointestinal problems
Hearing loss due to damaged cilia, Heat sensitivity, Hyper pigmentation scarring
Hypersensitivity to other medications, Hyperthyroidism, Hypothyroidism
Idiopathic Thrombocytopenia Purpura (ITP), Infertility, Irregular menstrual cycle
Irritable bowel syndrome
Joint pain
Kidney damage
Lid entropian, Lid Kertinization, Liver damage, Loss of taste buds
Low immune system, Lupus
Mouth pain sensitivity to certain foods, complaints of throat pain from carbonated drinks
Narcolepsy. Neuropathy ,Permanent loss of nail beds, Photophobia, Pores scarred shut, Post traumatic stress
Psoriasis
Rashes, Reduced Perspiration,Reflex Sympathetic Dystrophy (RSD)
Rheumatoid Arthritis
Scarring of tear ducts, Scarring of the bladder, Sepsis, Sinusitis, Sjogren ’s syndrome
Skin problems, itching and peeling, sensitivity to sun
Stomach ulcers, Swallow disorder, Symblepheron
Teeth of loss of enamel, tooth decay, gum disease and in children loss of tooth buds resulting in loss of adult teeth
Ulcerated colitis, Urethral scarring, Vaginal Stenosis, Vanishing Bile Duct Syndrome
Vasculitis
Weight loss
for more info www.sjsupport.org.au

Wow, what a list! ...it suddenly made sense to me, why I tend to feel a few of the above and haven’t fully understood the repercussions it has had on my body..

It really scared me, I will be honest, I was thinking, will I ever get through this... will I ever be able to look at bright lights again, a fireworks display, look at the sunlight... will my eyes ever look normal again? Will I ever get rid of this cough, will I ever have working tear ducts again, and my eyes ever naturally lubricate? Will my skin ever go back to my normal colour, will I stop feeling sensitive to certain tastes and food types? what will I look like in a couple of years? will I ever be able to enjoy days out in the sunshine, without the fear of getting burnt again, or feel what it is like to not be so worried about being affected by an adverse drug reaction again? will I ever get any of the above in the future? the answer to all those questions running through my head is, *taking one step at a time, and trusting the process and having faith...

Life is funny like that, it throws us such unpredictable challenges, often enough to keep us on our toes... we can either grab those challenges with both hands, embrace them and fight it, or we can run with our hands in the air frantically and not face them.

You choose? You create your own path...

Since of late I have been feeling a sense of fear, I must admit when will I ever go back to the old me, but then again I realized I don’t want the old me back... This is my new skin, my new inner being... am much stronger than I ever was. And who cares if I suffer these symptoms, I take life as it comes...we can’t live in fear or let it overcome our entire life ... it cramps our style and it turns us into unpleasant beings...

Fear of something is the worst place you can be in, and then as a result constant complaint of what you can’t do! It’s not a nice frame of mind for you, and it sure doesn’t make you a nice person to be around either.

My mother so wisely told me this morning, how she got through this when she heard the news that I had SJS/TENs and how she felt on her journey from the time she left home, getting on that plane and then facing my fate.

She said she never really read up on it, as it would have upset her more, she found out some information, but even when she saw me lay on that hospital bed, she looked beyond what she could see. She used to close her eyes when she sat next to me (she said) and would pray for me to be healed....  Because the way I looked didn’t seem promising ... Having faith  is believing in something we can’t see, and that’s what my guardian angel did for me. She believed and prayed to God.... and I am healed.. They stormed the heavens for me, and am a miracle today...My recovery was unexpected, as I was not meant to make it. So the fighter within, the family around me, and the almighty one above,  am walking today, and back to working part-time...then I think, overcoming side effects of this adverse reaction, is a walk in the park!

Walk in the park I will, with deep breaths, embracing my fears, and fighting within each day..

I am now more than ever also determined to create a conscious effort around this condition and overcoming it… I appreciate all your support and help and ideas to do this. I was made aware that in Australia there is no support network or foundation for SJS. And this will be a part of my mission, to at least create a support base for SJS survivors, and support for those families that have lost loved ones in this battle..

No doubt, we all face fear in some shape or form, don’t shun from it, as much as I fear the side effects and I am writing about it, as it is my form of healing…I am taking each day as it comes. In the end that is the only thing we have control over, the very next moment… Be brave, be bold and be courageous and you will certainly be surprised at how strong you are.. “you are always stronger than you know”… and you will have a faithful God beside you..

I will keep writing of my beautiful experiences, and the not so nice ones, that we can all turn into lessons in some way… Don’t give up, if fear holds you back! Strike it!