Great video about Topical Steroid Addiction/Withdrawal

I found this video the other day and while watching it I couldn't help think... "This is me!":(

I think for anyone that doesn't quite fully understand this addiction this is a great video. It accurately describes TSA and TSW…

Moisturiser Withdrawal pre TSW part 2

So… since end of November I still haven't applied one drop of moisturiser anywhere (except my face and apart from a few days of using sunblock) and I'll admit that my skin has always been good in the summer months, but since I have stopped moisturising my skin has been sooo weirdly good!

Its the strangest thing!

My skin still doesn't produce its on oil very well and most of the time I have a very soft layer of dry flakey skin which is barely noticeable unless you look up super close at it… which I do all the time haha. It's especially dry after showering so I tend to shower every other day now which helps me feel a bit more comfortable.

I've been thinking about this whole 'moisturiser withdrawal' thing quite a bit lately and the main reason that I can come up with why it works so well based on my own skins reaction to it is that I have been diagnosed with so many allergies (dust mites, grass pollen, horses, cats, dogs, eggs, nuts… all nuts, nickel plus heaps more… oh did I say dust and grass?? so basically the whole world then) and I just feel that now that I have stopped moisturising, the outer barrier of my skin is so much tougher that it doesn't let these allergens get through the skin barrier quite so easily so it can't create that irritation.

I know there are probably heaps more scientific facts around this topic, but based on my non-scientific background thats the best way that I can explain how it works for me.

In regards to my itchiness, I still itch heaps.. maybe even a bit more than usual! But because I haven't had the redness and swelling in my skin quite so much over the last couple of months, I have actually cut down my steroid usage even more. 6 x in December. 5 x in January.

I can feel the deep itch sometimes though, the itch of my body trying to heal from the inside and I can tell that once I stop the roids altogether that there is going to be some serious itching and scratching going on. But I feel that now my skin feels tougher I am almost ready to handle this.

The other thing that I need to do is get tested for the MTHFR gene mutation which one super amazing blogger (Stopping Topical Steroids) discovered a few months ago which may be the cause of how I got addicted to this s*#t in the first place.

But for now I'm counting down the days. Sorting out my life here in Perth for my move back to New Zealand for my 6 month break to beat this demon…

Oh and when I say break I mean starting up my own online clothing and freelance design business!! Whoop Whoop!! Something that I have always wanted to do but never really had the opportunity. So I have decided that even though this may potentially be the most difficult thing that have endured my whole life, I want to start putting a positive spin on it from now on… there may be times when I am incapable of moving for days or weeks even… but for the rest of my healing time I am going to be working at getting this business off the ground and I guess I'll see where I go from there.

Moisturiser Withdrawal pre TSW

So I've been reading a lot on other peoples blogs about how moisturiser withdrawal helps for some with TSW and not for others.

In November my skin was actually getting worse (even though it was coming into summer) from the reduced use of topical steroids. Actually it got so bad that month that my TS use went up!! -- In a previous post I kept count of times per month that I would apply the cream and it was usually around the 7 days a month mark -- November I applied TS 12 times!!

I realised that I was reducing my usage and thats probably what was causing the increase in itch. But with all this research I'd been doing on Moisturiser Withdrawal it seemed I had nothing to loose as everytime I applied my greasy messy emollient I felt like a million crazy little fire ants with tiny tickly legs would crawl all over me for about an hour after.

I was getting so sick of having to apply full body moisturiser 3 times a day and still feeling dry! Sick of everything I touched getting greasy fingerprints all over it! And sick of being scared of going to bed and feeling like all my precious creams I'd just applied everywhere were just going to rub off again!

So one week before the end of November I stopped applying moisturiser to my legs... one week later I stopped applying it everywhere except for my face (for presentation reasons - still got to work and face people daily) and apart from the odd bouts of sunscreen on the beach days, I have not used moisturiser since!!!

Now this may not be a big deal for some, and when I tried explaining it to my family who were visiting for Christmas, they looked at me like I was crazy, and tried suggesting all these alternative creams. After a lifetime of applying moisturise EVERYWHERE because I though it was a necessity, after trying god knows how many different types, emu oil, coconut oil, shea butter, aloe vera moisturiser, olive oil (that I sometimes dreamed about being able to swim in) body butters of all different flavours and colours, I KNOW what my skin feels like, and a month and a week later my TS usage has dropped by half it was last month and I feel, well GREAT! Apart from the initial, like 'the rusty tin man' feeling. I am no longer scared of going to bed, or getting grease spots on all my clothing, phone, computer, stuff at work that I had to try and pretend that I hadn't been to one getting greasy fingerprints everywhere.

So what I am hoping with this experiment is that my skin will continue to toughen up a bit in the next few months and I can continue to reduce the roid usage until my withdrawal beginning in April.

Im actually getting a little excited and almost impatient to start the withdrawal, but the time for me is still not right. There are still things that I need to organise and money I need to save in order to have as stress free withdrawal in the first few months as possible.

I'm getting less and less afraid every day.

Remember… Good Skin

I just wanted to do one more post today to show how my skin is at the moment and how its been in the past so that I can look back at this and remember what my goal is!!!

Taken this morning, face is looking very calm

(don't tell anyone that 3 days ago I used a quarter of a cotton bud size 

of elecon on my top lip / cheeks as it looked like I had grown 

a red beard and had to go to the races the 

following day) <---- this is not a regular occurrence!!

1 - This is my most recent face pic (other than the one above it) taken only a couple weeks ago.

2 - This was almost 2 years ago

3/4 - Couple months ago

Yes, I like catching a few rays…. I know, I know, I know. I can just hear all my friends voices in my head RIGHT NOW haha but I just feel so much better with a natural tan. You can't see all my red spots quite as easily and the fake tans just dry my skin out something cronic and then go all flakey… and then very visibly patchy… plus vitamin D is good for you right! (DISCLAIMER - In no way am I endorsing tanning!! Normal skin people should definitely alway go for the fake stuff… your skin can handle it. This is just a personal preference for me at the moment)

Me and My Hair

So I've been doing a lot of thinking lately about how I can make myself more comfortable when I start the withdrawal next year. One thing that has started bothering me a bit lately is my hair… when I have a shower it irritates the skin on my back when I'm shampooing or conditioning (not from the shampoo or conditioner) it just generally feels icky, so recently I have brought one of those big tooth hair clips and I just clip it up while I'm waiting for the conditioner.

But the more I think about it, my hair is such a lot of work at the moment so most of the time I just have it tied up on the top of my head in a bun. So this is how I came up with the idea to chop it all off when I start the withdrawal, just to make my life so much easier and that much less icky.

 

I'm the one on the left with the curly brown hair 

that when straight is nearly down to my bum.

Potential hair lengths to make life a little easier.

Now, I've decided that I'm not just going to get it all cut off and swept away into the bin!! Oh no way!! Not after 3 long years of growing it all out. Na uh!

I have discovered this great cause called Beautiful Lengths [ http://www.beautifullengths.com.au ] where you can donate your hair to Pantene who get wigs made out of it to support women who are dealing with cancer. I would love to know that I can help someone else feel better about themselves because I know that at the end of the withdrawal, although it will be hell for who knows how long, I will get better again and be (relatively) normal.

My Skin at the moment

Since I found out about the whole Topical Steroid Addiction and Withdrawal I've been a lot more aware of how much of the topical roids that I'm using and how often.

Over the last few months I have been keeping a tally of how many times a month I've used TS. Generally they have all been on different parts of my body but mainly my neck, chest, arms, hands, wrists and shoulders, usually about 3, 4 or 5 days apart.

July - 4 times
August - 11 times
September - 7 times
October - 7 times

The main thing I have noticed since I have been keeping count is that I have slowly started developing mild withdrawal symptoms. Most probably because from what I can remember I used to just put on the roids whenever I felt a little itchy... now I wait until I'm at the point where my skins on the verge of breaking point and then I give it a fix.

The symptoms that I have noticed are....

1. My sleeping has become terrible! Wake up 2 - 6 times a night (yes I keep count), sometimes only getting 5/6 hours sleep a night (this is strange for me... I have always been a big sleeper)

2. My arms and wrists quite often swell up and become quite uncomfortable

3. At least once every 2 weeks my skin drys out and flakes off

4. My legs have become insanely itchy and I've never had a problem with my legs before

5. I scratched my ankle recently and got the strangest bright yellow ooze that I've never had before! (I guess this is the ooze that alot of TSWers talk about)

6. I've got a few swollen lymph nodes, a couple on each side by my hips, one in my neck and one on my shoulder

7. I occasionally get the weird metallic smell in my skin when I rub it to much

8. And in general I'm a hell of a lot more itchy everywhere than I was this time last year.

So I hate to admit it but it seems alot like I'm already in mild withdrawal faze. My body is just soooooo ready to get on with it and get this whole thing underway. But I still need to save. There is no way that I am going to do complete withdrawal without taking time off, its hard enough some days at the moment to get myself out of bed and out the door.

Anyway enough of my problems for now... next time I'm going to talk about something positive, like maybe what I'm looking forward to once I'm normal again or the supplements that I'm eating, or (semi) healthy diet that I'm trying to follow or maybe I'll post some pics of how my skin looks at the moment so that I've got something to compare to on the other side. I've had enough of feeling down about this for now...

My Bali tattoo to remind me to 'be brave'

Haha on a side note I'm looking forward to being able to grow my nails long again!!

The Itch

Itching is such a constant thing in my life, has been for as long as I can remember. I always find myself really amazed when my skin is calm and I cannot feel a tickle or prickle or tingly sensation anywhere on my body. I will constantly identify my spots that I can feel.... for example at the moment my whole lower back feels like a cat with prickly fur is slightly rubbing against me and my hands are being tingly and annoying, also a little spot behind my left ear... Its just something I've learnt to live with and I must say it does get frustrating and gives me mild anxious feelings. This is probably the reason I have such high stress levels.

If I get tired I get stressed which means I get itchy...

If I get hungry I get stressed which means I get itchy...

If I'm just stressed in general I'm just generally itchy....

So this brings me to the reason for writing this post.

I've been thinking. If there was only a way to turn off the itch in your brain. Imagine that!! Being able to go through topical steroid withdrawal without itching.. which in turn would mean no swelling, no ooze, no cuts and scrapes, no crustiness, no skin flaking off every where from healing after crazy scratch-fests!! 

Don't get me wrong.. I imagine that you would still get the serious red skin from your blood vessels healing, insomnia from your adrenals healing and nerve pain from your nerves healing. But it would get rid of half of the TSW issues!

In searching this particular topic on the web I came across this one article. Don't get me wrong again...  I do not in any way endorse animal testing of any kind. I just found some of the following information was quite interesting.

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Scientists have been able to identify the molecule that signals our brain to start scratching us raw—and removing it kills itchiness forever.

The molecular geneticists in question, Santosh Mishra and Mark Hoon of the National Institutes of Health, began by examining the neurotransmitter chemicals in our spinal column that pass along sensory information such as heat, pain, and yes, itchiness.

The true test came when the pair created genetically engineered mice that couldn't produce the Nppb transmitter. First they tested to see if the super-mice were still able to feel other sensations such as heat and pain, to which they all responded normally. So the removal didn't affect their response to other stimuli. Then, out came the itch-triggers (such as histamine). While the normal mice immediately started scratching themselves, the engineered mice remained calm and undoubtedly itch free. 

Until the scientists re-injected them with Nppb, that is, at which point all bets were off.

Next, they were able to identify a specific type of neuron in the mice's spines with receptors called natriuretic peptide receptor A (Npra), which seemed like a likely candidate to accept Nppb. And sure enough, once the Npra was removed from normal mice, they appeared totally impervious to any itching whatsoever. What's more, they were still able to feel other sensations, so lacking this neuron wouldn't affect their sense of pain or touch.

And even though these tests were performed on mice instead of humans, we share incredibly similar nervous systems with our more rodent-oriented friends. So at the very least, this gives us a far greater understanding of our own itch reflex. But it could also very likely lead to solutions for people who produce an excess of Nppb and help make stronger, more effective itch treatments—or perhaps even total cures.

It's not going to be totally smooth sailing, though. Nppb is significant not just for the sensory nuisance it causes but also for its ability to help regulate blood circulation and pressure. Which means shutting it off entirely might present a bit of a problem. In general, there's still a lot that we don't understand about itching and its evolutionary benefits, but our potential newfound ability to turn it on and off is certainly an incredible first step. 

Written by Ashley Feinberg on Gizmodo - (minus a few sections I didn't want to include)

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Great news, right? Removing that gene or the pathway it travels from people could stop the very same itching that gives those going through TSW hell.

Unfortunately Nppb has a much broader role in the body, including the heart, kidneys and several other organs, so permanently removing it could lead to a variety of health problems... makes me wonder though if its possible to turn it off like a tap that just needs to be shut off for 6 months to a year and then turned back on once the body is healed...

Well, even though identifying the gene that causes itching doesn't cure itching, it does give a few clues as to how it could possibly be treated in the future.... Maybe like on one of those futuristic movies where everyone lives in space. I don't even know if I'm being sarcastic or serious.

I think if I ever found out that they were doing this on people, I think I would seriously consider putting my had up. Thats a scary though.

Oh well enough on that topic. Its dinner time!