I have 33 years of experience up my sleeve which includes 15 years of driving, 18 years of dating, 22 years of working (yup, I started when I was 12) and about 32 years of topical steroid addiction. Dammm I feel old!
'Home is where the food is'
I live with my awesome boyfriend and my little havanese dog in a lovely house on the Gold Coast, Australia. We have a great life together in this small city and enjoy expanding our creativity and experiences together. I am loving experimenting with my new found hobby, cooking. I say cooking, but most of it isn't actually cooked, ya feel me? And my boyfriend loves eating it too, so everyone wins! Oh and my dog is the greatest. He's got the mad skills. He can dance.
The Gold Coast's health culture is blossoming with the popularity of raw and vegan restaurants popping up where they never existed 10 years ago. There are more natural health practicioners here than ever before and I feel I am lucky enough to have found the best naturopath alive, right here in my town :)
'Wheres your head at? And other musings'
I have a brain, a mind, a consciousness and I choose to exercise them regularly. I am a wanna-be comedian, photographer and astronomer. As a permanent-part time vegan, I am a rookie in the kitchen but am passionate about food. I believe in activism for the rights of humans, animals and the environment. I believe that ego is the greatest hindrance to the evolutionary progress of our minds and relationships with this world, and one another.
Hopefully the people in my life would describe me as a loving daughter, friend and partner. I do not pigeon hole myself into an age group, gender or any other demographic. I play the drums, I go hiking, I travel, I enjoy shooting, I get my hair done, I read, I'm into anything sciency, I meditate, I like bugs and Thai food (not on the same plate), I craft, garden, play video games, I'm a budding philosopher, I watch documentaries and cartoons and my music taste varies from Metallica to Marvin Gaye to Edit Piaf. I feel most anxious among conflict and most peaceful when I'm in the forest or most other beautiful natural setting. My interests are broad and esoteric so I can usually find something in common with anyone. Oh and I like to laugh, a lot!
Can you tell I like to learn? This, I believe, is the key to youth. Once you stop exercising your brain, there begins its stagnation and slow degradation. I am by no means a scholar. But I could be! You can gain university spec education online, for free. Did you know that? Not to mention the overabundance of information on anything you have an interest in. So if your not 'doing an internet' then bury your head in a book or within someone else's head while you enjoy discovering them. Talk to people. Explore nature. Have adventures. Never. Stop. Learning. Because this world is so incredibly AMAZING that there is literally a life time of wonders to discover. Expanding ones awareness and intellect builds spirit and character and I wish for a world where everyone has the spirit to make it better.
My childhood was a mixture of getting muddy, riding bikes, having adventures exploring the forests and farms of the beautiful New Zealand, and being in hospital fighting for my life. Yes, I was the sick kid.
My story is by no means a unique story and starts at a time I don't remember, that is, when I was a baby. I came into this world with a few minor issues. My first was cradle cap, my second was eczema on my face. This is where the doctors first made their mark on my life by prescribing me a steroid cream to put on my fresh developing skin. This was used every time the eczema flared up, but it worked a treat. Coincidentally, not long after this I developed asthma which I was prescribed oral steroids for. Here begins my steroid addiction.
My earliest memory was as a very small child having eczema on my fingers. The soothing cortisone was so alluring but even though it would keep my fingers clear for a while, it would eventually spread somewhere else, like my face or my elbows. And my old friend cortisone was always ready to help. As my eczema got worse and steroid use increased, so too did my asthma. It saw me spend weeks in hospital every year, usually in winter, hooked up to IV's and sometimes fighting for breath in oxygen tents. All the while I knew I was being packed to the hilt with medication but I felt very safe and in good hands here so I was a good little patient and ate up all the oral steroids (prednisone) they fed me, breathed in all the steroid puffers they would give me and let them lather me in cortisone if they needed to. I was a 'roid freak!!
There was definitely a connection, whether symbiotic or a cause and effect connection, between my eczema steroid use and my asthma. I found that when the cortisone was working well and my skin looked good, my asthma would get increasingly bad. On the other hand, when I would back off the cortisone and my skin showed signs of eczema, my asthma would become noticeably better. A bitterly annoying happenstance and one that no child should have to endure.
'There she grows'
The toll of the medication on my body became obvious as I grew older. My growth was stunted. I became allergic to almost every animal I came into contact with. I would get hives on my whole body anytime I got wet (there goes public swimming). My liver was overloaded. I began suffering with gut issues including digestion, severe pain, food intolerance's and chronic candida overgrowth. I suffered from bladder, kidney and adrenal gland issues, thyroid and hormone problems, muscle issues. The list goes on and on my friend.
* Corticosteroids affect ALL organs when used over long periods. Much like domino's, the change in one organ will affect the next.
I must have visited over 50 different doctors in my life time. Some of them warned me about the long term affects of steroid use, however when asked what is my alternative, how do I survive if I cant use my inhalers long term? What do I do for my eczema if I have to stop my creams? Usually I would be met with a blank stare before being told there is nothing I can do. Nothing!? That's it, I'm basically f*cked for life? Many times I asked if there was a way to determine the underlying causes to my issues and still, blank face, slack jawed faces stare back at me. In my experience, finding a cure or the cause is never on a general practitioners agenda. No wonder I have serious trust issues with the dogma of the medical industry!
I carried this disease with me like luggage into my adult years, desperately trying to mask it, cover it up, wrestle it back inside with steroid creams. I wanted to live the life that everyone else around me lived, eating and drinking all this beautiful food we are so privileged to have, smoking (ridiculous considering I am asthmatic) and partying constantly like it's 1999! I knew it was all taking its toll because I would get more and more eczema which needed more and more cortisone, more antihistamines and more puffers just to compensate for the lifestyle. The effect of this ongoing, compounding, immune suppression meant I was constantly catching every cold, flu and bug going around. My life was a constant seesaw of medicating and sickness.
When I left home at the age of 20, it was the beginning of some discoveries for me. I realised just how badly compromised my immune system was but I also discovered there were alternatives to the treatment I was receiving. I decided to first speak with a bunch of different doctors regarding my conditions and seek their views on such alternative modes of treatment. Their responses all had the same message; I will never be cured, I need to continue taking the medication for the rest of my life and I just had to live with it (in as many words). The dejection I experienced every time these 'professionals' would show such a lack of desire to help address the cause of my problems was beyond frustrating. The only thing they were ever prepared to do was write more prescriptions for steroids. The very substances they tell me I shouldn't take long term. Hell, if bartenders can be fired for serving to someone over the limit then where do doctors draw the line with addiction?
'What have I got to lose'
It took me around 3 years of procrastinating and researching before I decided to bite the bullet and try alternative therapies. I had just purchased a house with my mother and my boyfriend at the time was living with us, so I had enough support to give me the confidence to jump in feet first.
At this point in time I was unaware of TSA (topical steroid addiction) and so was extremely unprepared for what I was about to embark upon. Homeopathy was the treatment I decided on as part of my plan but 3 months in, my practitioner decided to skip town, leaving me feeling deserted and with what looked like third decree burns all over my hands. This was eczema. So I found another homeopath who was local and she was very sweet and genuine and convinced me that she would be the one to cure me.
I persisted with this new homeopath for over a year and in that time my eczema just got worse and worse and my life began falling down around me. I was working in fashion retail at this stage and it was hell. I definitely don't recommend working in customer service if you are withdrawing! It's amazing how many people would ask me about my skin, some people even thought I had suffered a horrible accident. At one point, every second or third customer would make some sort of comment on it. Additional to these constant reminders, I suffered bullying by one of my coworkers who complained to the staff saying how she wished I would hurry up and clear my skin up because it disgusted so much so, that she cant eat her lunch around me. This woman then went on to try and have me fired. This was all consuming. Between the harassment, the sleepless nights from the incessant itch and the day time ordeal of controlling myself from scratching, I had enough so decided to quit my job. I took some time off work at this point and decided to seek another homeopath as I was unsatisfied I was getting anywhere with my current one. I then found a lovely gentleman who appeared to hold superiority in the homeopathy community as he was an educator and trained many homeopaths in our state. I stuck with him for almost 4 more months and after having no results, he told me we would have to start from scratch. That was a kick to the teeth, making a mockery of the last year and a half I had just spent in agony. I became depressed and borderline suicidal so decided I must rekindle my relationship with cortisone for the rest of my life As under equipped as I was for this ordeal, I was also lacking in the financial support, the emotional maturity and the education in nutrition which I badly needed. At no point did I completely stop the cortisone, I was still using it in small spots like my face, just to get me through. I had no idea of the actual process going on inside my body and it seemed even the homeopaths didn't realise either. They used the trial and error method, basically throwing things at the wall to see what sticks. They worked with the assumption that there is a deep-seeded trigger within me like a childhood vaccination or even a vaccination my parents had, which can only be eliminated through taking one of their medicines, once they figured out what that was. Many people have great experiences with homeopathy and I don't deny that it could be a worthwhile form of treatment, but for me, it was a flop.
So I continued the juggle between health, albeit, faux health and sickness and the desperate attempts to keep myself appearing normal and healthy. It's a darned exhausting charade I tells ya!
Years went by then in my late 20's I was exhausted enough and better educated to decide to make another vain attempt. Bearing in mind I was still unaware of TSA, I decided on going vegan as I had read the benefits of this diet with healing the gut and skin disorders. A month or two into it, and having begun to cut down on the cortisone creams, I was stopped in my tracks by a negative and unsupportive partner. After only a month or two of the constant barrage of abuse over my reasons and choices, I gave in and hit the cortisone harder than before. Needless to say this toxic person is no longer in my life *cyber high five*. 'Into the fray'
I decided to begin this withdrawal process late October 2014 after an emotional year, still with no real knowledge of topical steroid withdrawal. I was encouraged to start the process by my wonderful naturopath who has extensive knowledge of this process so was a great help at getting me motivated and started. Now here I am again. Throwing myself head first into battle, armed with diet and nutrition intelligence, wise old sage maturity, complete knowledge of what I am actually dealing with and the unwavering support of my amazing partner, Brett. He is my rock and without this man I would not be able to go through this. Big ups to you, Brettles!
None of my peers really ever knew the extent of my condition as I was so good at the medication balancing act and playing down my symptoms. So it's only now in my 30's that I am becoming more honest with people and letting them see the state of my skin as I currently go through my withdrawal process and it's interesting seeing the different reactions! Amazingly, some friends show no real concern for me, even act almost aggressive (ignorant) towards my reasons and actions, there are the people who just don't know what to say or don't want to know about it so kind of avoid talking about it. Then there are the friends and family who have been incredible in showing me the support and love which I so badly need.
There's always an element of shock when people see me in this state or see photos of how my skin was looking, having never actually seen my eczema before, most of them are quite shocked. One of them said to me recently, "But its never been this bad before. Why is it so bad now?", to which I would have to repeat that I've always had eczema, it was just hidden by of the cortisone. The reason I wanted to make this blog, as lame as it sounds, was to 'own it'. Yeah I said it. Having attempted this process in the past and failing, I need a catharsis and a commitment to see this through. This blog is going to keep me honest. I know I will have hiccups along the way and in fact I already have, but at least this way I'm more accountable for my progress. With any luck I might inspire a few other steroid addicts out there too. Because this addiction is the devil and I am well and truly over it.
That old adage that if you don't have your health then you don't have anything, is so very true. Unfortunately it's a blessing that can only really be appreciated by someone who has suffered without it. So here ends my story so far and I hope that I will soon be on the receiving end of good health.
Thank you for either joining me on this journey, or seeking help through my experience. Wish me luck and see you on the other side.