This is not going to be a long post. I just have to say something.
According to Kline (http://www.klinegroup.com/), the world wide emollient market is predicted to reach 120,000 tonnes in 2014. The natural personal care market is already $29+ Billion. Due to high manufacturing costs and limitations of natural
preservatives, natural-inspired products are preferred by many
manufacturers and they dominate the market. What the?
In the early days of moisturiser marketing, manufacturers needed to create demand so they "taught" the public that petroleum jelly is bad for your skin because it is a by product of oil refining. They said something like "You wouldn't drink petrol so why would you put it on your skin".Then the big business of "natural" moisturisers began.
Generally a moisturiser is some kind of cream or lotion. All moisturisers require a detergent to mix the oil and water components together. Sodium laureth sulphate (SLS) and sodium lauryl ether sulphate (SLES) are the detergents found in many personal care products like moisturisers, shampoo and toothpaste.
SLES and SLS are irritants like many other detergents. It has also been shown that SLES also causes eye irritation. Studies have been done that prove SLS thins the skin.
The study was published in the British Journal of Dermatology.
'Our study has found that rubbing aqueous cream containing SLS into
the skin thins this protective barrier, making the skin more susceptible
to irritation by chemicals.
So to use this cream on eczemous
skin, which is already thin and vulnerable to irritation, is likely to
make the condition even worse.’
A picture of a flower on the package makes the product natural-inspired and is therefore best for your skin.
In my opinion the whole moisturiser industry is based on a classic confidence trick. They spread the false information and then provide the solution to their lies. It's big business.
I use white petroleum jelly on my skin. Petroleum jelly is mixture of hydrocarbons. That's literally hydrogen and carbon. When we are talking about natural, it makes sense to look at the human body. What are the 3 most abundant elements in the human body?
I may choose to stop using petroleum jelly during a major nitric oxide attack simply because it has heat insulation properties that are not great when my skin is burning.
As for moisturisers that are not a mixture of oil and water, such as coconut oil. I would love to be able to use coconut oil. Maybe one day I will, but at the moment my skin is waaaay to sensitive to tolerate anything but carbon, hydrogen and water. Thanks for reading. I was going to watch a movie tonight but I just had to say something.
Monday 16 December 2013
Monday 9 December 2013
We're Gonna Need A Bigger Boat!
When I wrote my first post Eczema Bubble Bursts I meant for it to be like a newsflash in a Superman cartoon. I had no idea it would become the name of the blog. Anyway, I've changed that now.
In my constant hunt for the cure for eczema I have looked into so many wacky cures, potions and lotions. With each experiment I tried to test only one thing at a time. I knew that I was allergic to most things, so it was hard to get accurate results. All along I was thinking "If I add this mineral, EFA, probiotic etc to my diet, then my eczema might go away".
When I found out that the cure is to stop steroids and learnt about the process of withdrawal, I suddenly realised the effects of steroids are a lot bigger than I thought. I'm going to need a bigger boat to reel this monster in. It's on a totally different level than juicing wheat grass and growing kefir.
OK what are we looking at here?
From past experience I know that I will be out of action for a while so my husband will need to do school runs and shopping some of the time. This means time off work, less money coming in etc....Big changes!
We are going to move to a cheaper house that has a bath. We currently live in Darwin Australia and there are no cheap houses to rent here. So we are moving to Cairns in Queensland. Both my boys were born there and I love the place. Hopefully we can stay long term, make some friends and give our kids the quality of life they deserve. My husband and sons have been so patient with me and I already owe them so much. I hope that this withdrawal doesn't traumatise them too much. It will be worth it in the long run. It hasn't been great for anyone so far. Things can only get better. Much, much worse first and then eventually better.
Yesterday I gave written notice to the real estate agents that we will be terminating our lease. I cancelled my sons school enrollment for next year. It is the best school in the universe. The school takes in refugee children from all over the world and teaches them to speak english. In 12 months the kids are able to speak english and can then in enrol in any school to finish their education. It breaks my heart that we have to leave because that school is full of unconditional love. Everyone is different and everyone belongs. I am not confident that I will find this quality again. I guess my only option is to be extremely grateful that my boys had the experience.
My next task is to hang the washing out, buy christmas presents and find packing boxes. I've still got the cloth nappies from when my boys were babies so I think I might keep them for mopping ooze. They are colourful and might cheer me up. We'll see.
In my constant hunt for the cure for eczema I have looked into so many wacky cures, potions and lotions. With each experiment I tried to test only one thing at a time. I knew that I was allergic to most things, so it was hard to get accurate results. All along I was thinking "If I add this mineral, EFA, probiotic etc to my diet, then my eczema might go away".
When I found out that the cure is to stop steroids and learnt about the process of withdrawal, I suddenly realised the effects of steroids are a lot bigger than I thought. I'm going to need a bigger boat to reel this monster in. It's on a totally different level than juicing wheat grass and growing kefir.
OK what are we looking at here?
From past experience I know that I will be out of action for a while so my husband will need to do school runs and shopping some of the time. This means time off work, less money coming in etc....Big changes!
We are going to move to a cheaper house that has a bath. We currently live in Darwin Australia and there are no cheap houses to rent here. So we are moving to Cairns in Queensland. Both my boys were born there and I love the place. Hopefully we can stay long term, make some friends and give our kids the quality of life they deserve. My husband and sons have been so patient with me and I already owe them so much. I hope that this withdrawal doesn't traumatise them too much. It will be worth it in the long run. It hasn't been great for anyone so far. Things can only get better. Much, much worse first and then eventually better.
Yesterday I gave written notice to the real estate agents that we will be terminating our lease. I cancelled my sons school enrollment for next year. It is the best school in the universe. The school takes in refugee children from all over the world and teaches them to speak english. In 12 months the kids are able to speak english and can then in enrol in any school to finish their education. It breaks my heart that we have to leave because that school is full of unconditional love. Everyone is different and everyone belongs. I am not confident that I will find this quality again. I guess my only option is to be extremely grateful that my boys had the experience.
My next task is to hang the washing out, buy christmas presents and find packing boxes. I've still got the cloth nappies from when my boys were babies so I think I might keep them for mopping ooze. They are colourful and might cheer me up. We'll see.
Sunday 8 December 2013
Be True To Who You Are
It's OK not to be OK
Pretending to be OK has been my life.
Well not anymore. I take inspiration from Louse, who is currently going through yet another wave of withdrawal. Here's her blog http://topicalsteroidwithdrawal.blogspot.com.au
In her most recent post Louise talks about what she is really feeling.
I think this attitude is so important because at the end of the day if you are not yourself then who the heck are you? I know I am certainly not my skin. That's all going to fall off anyway.
Louise thank you for bravely paving the way so that others can follow and learn the rhythms of topical steroid withdrawal.
Pretending to be OK has been my life.
Well not anymore. I take inspiration from Louse, who is currently going through yet another wave of withdrawal. Here's her blog http://topicalsteroidwithdrawal.blogspot.com.au
In her most recent post Louise talks about what she is really feeling.
I think this attitude is so important because at the end of the day if you are not yourself then who the heck are you? I know I am certainly not my skin. That's all going to fall off anyway.
Louise thank you for bravely paving the way so that others can follow and learn the rhythms of topical steroid withdrawal.
Saturday 7 December 2013
Red Skin Syndrome
I guess red isn't that bad. If I was green I would be more distressed. When I go that pearly purple colour it's really quite amazing. So what is this this red skin syndrome and how does it happen?
In a nutshell when people who are addicted to topical steroids stop using them or don't use enough the persons skin goes red. Cortisone creams and ointments that are prescribed to treat rashes actually do damage to the skin and other parts of the body. The more steroid creams people use the worse the damage, addiction and withdrawal symptoms are. In my case 4 days is the amount of time I can stay a regular flesh colour, then I go red and have to use the steroid ointments again.
To stop this viscous cycle of withdrawal I have to stop using the steroids. There's a great community of people who have done this or are in the process of breaking their addiction to steroids. You can find help here http://www.itsan.org/eczemacure.html .
New Itch Nerves Discovered
Lets Target That Itch
It used to be said that itch is just a disguised form of pain.
It has been discovered recently that there are types of nerves whose only function is to detect itch and tell our brains about it. These nerves run from our spine to our skin. They aren't found any where else in the body. That's why you don't here people running around screaming "my gall bladder is soooooo itchy".
This discovery is extremely important because it means that medication can be designd to target these particular nerves and shut off the signal.
Until now we have had to rely on antihistamines and steroids to reduce the inflammation and itch sensation. Antihistamine does not address the itch message that is being sent to our brains from nerves that are activated by things other than histamine. Steroid, well I don't even want to talk about that right now.
The really cool thing about this discovery is that these nerves don't detect pain so shutting them off is not going to affect the protective nature of pain signals.
It seems that there are two independent itch circuits or maybe more. Some neurons detect itch, some detect pain and some detect both itch and pain.
For me personally, pain and itch has always felt different. It would be so much easier to handle this itch if it was only pain! Pain doesn't require my constant attention and I can focuss on other things and just endure the pain. Itching requires my full attention. If I think about something else I will scratch the crap out of myself. Complete focused concentration!
I don't know how it works but running very hot water over my skin switches the itch to the completely calming sensation of pain. Ah that's better. Yes I know I may be burning myself but it feels so good!
Here's a link to the study www.nature.com/neuro/journal/v16/n7/full/nn.3404.html
"These findings support the presence of functionally distinct sets of itch-generating neurons and suggest that targeted silencing of activated sensory fibers may represent a clinically useful anti-pruritic therapeutic approach for histaminergic and non-histaminergic pruritus."
So that's good news!
It used to be said that itch is just a disguised form of pain.
It has been discovered recently that there are types of nerves whose only function is to detect itch and tell our brains about it. These nerves run from our spine to our skin. They aren't found any where else in the body. That's why you don't here people running around screaming "my gall bladder is soooooo itchy".
This discovery is extremely important because it means that medication can be designd to target these particular nerves and shut off the signal.
Until now we have had to rely on antihistamines and steroids to reduce the inflammation and itch sensation. Antihistamine does not address the itch message that is being sent to our brains from nerves that are activated by things other than histamine. Steroid, well I don't even want to talk about that right now.
The really cool thing about this discovery is that these nerves don't detect pain so shutting them off is not going to affect the protective nature of pain signals.
It seems that there are two independent itch circuits or maybe more. Some neurons detect itch, some detect pain and some detect both itch and pain.
For me personally, pain and itch has always felt different. It would be so much easier to handle this itch if it was only pain! Pain doesn't require my constant attention and I can focuss on other things and just endure the pain. Itching requires my full attention. If I think about something else I will scratch the crap out of myself. Complete focused concentration!
I don't know how it works but running very hot water over my skin switches the itch to the completely calming sensation of pain. Ah that's better. Yes I know I may be burning myself but it feels so good!
Here's a link to the study www.nature.com/neuro/journal/v16/n7/full/nn.3404.html
"These findings support the presence of functionally distinct sets of itch-generating neurons and suggest that targeted silencing of activated sensory fibers may represent a clinically useful anti-pruritic therapeutic approach for histaminergic and non-histaminergic pruritus."
So that's good news!
Thursday 5 December 2013
Eczema Bubble Bursts
Topical Steroids Cause Eczema
Well, the news is out. Eczema as I know it, does not exist!
It all started with a rash. It may have been heat, soap, teething or an allergy that caused the rash. Doctors told my parents I had eczema and prescribed cortisone creams. The steroid creams worked for a little while but the rash always came back worse than ever. Stronger creams were prescribed to control the red oozing mess. Nothing made my skin normal.
Jump forward 45 years.
My whole life I have been searching for the cause and a cure for "my eczema". Sunshine helped a bit but never enough to make this life destroying disability go away. I could never predict when the top layer of skin would vanish and expose the raw weeping flesh underneath. All I knew was it happened often. My skin became so damaged that it would tear and bruise when I rubbed it.
A week ago I discovered that cortisone cream was the cause of "my eczema". Steroids damage the skin and more steroid creams are needed to suppress the inflammation caused by the damage.
The many times I was put in hospital to treat "my eczema", I was actually being treated for the symptoms of TOPICAL STEROID WITHDRAWAL. Nobody knew it at the time.
Stronger topical and oral steroids were administered and down the nasty spiral of drug addiction I went. Continually higher doses of steroids were required to suppress the increasingly severe symptoms of withdrawal and side effects.
Long story short. I don't have eczema and I have stopped looking for a cure!
International Topical Steroid Addiction Network
www.itsan.org
Many brave people have stopped using topical steroids and have cured themselves. Some share their valuable stories with the world. Doctors in Japan have helped thousands of people overcome their topical steroid addiction. Topical application of steroids can lead to addiction within 2 weeks. According to Wikipedia skin damage can happen within 2 days of topical steroid use.
http://en.wikipedia.org/wiki/Steroid_atrophy.
Never stop oral steroids abruptly. Always taper down under doctor supervision.
I am not a doctor. Everything that I have written here is from my own personal opinion and experience. It is a very simplified account of what I believe is going on with my body.
Obviously not all types of eczema are caused by topical steroids. I just wanted to put it out there in very basic form so that someone who is speed reading can quickly get what I am saying without getting bogged down in long paragraphs and miss the message.
A week ago I was researching treatments for eczema online and one link led to another link that led to a blog describing the withdrawal process. My world stopped still and I cried when I saw the babies going through withdrawal. I can't even imagine the suffering the parents of these children must endure. If they knew the dangers of topical steroids they would have chosen not to expose their children.
You can help by signing the petition which asks for mandatory warnings on labels. www.itsan.org/about_eczema_Petition.html
I have never blogged, twittered or face booked in my life. When I saw pictures of steroid damaged skin on the internet I thought "That's my arm. How did that get on the internet?" Then I became aware that regardless of age, race or gender, topical steroid damage and withdrawal kind of looks the same on everyone.
I am going to blog about fairly obscure things that people might be looking into to cure their eczema. Hopefully this blog will pop up in their search results. Well that's my plan for now. This is all very new to me.
Thank you from the bottom of my heart to all of those people who have shared their withdrawal journey and helped others to prepare and cope with their own recovery process.
Eczema can cause great isolation. It's not just a feeling of standing on the outside and looking in. For me it was more like "what planet is this? I absolutely do not belong here!" Now that I know the facts it all makes sense. As I said on the itsan.org website "I am unplugged from the Matrix".
Let the healing begin!
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