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!