Spring is near :) xo

Hey everyone.

I just thought I'd touch base on how I was going. I am heading towards another anniversary and still no signs of eczema. It's been a very busy year with my youngest who has asperger's starting school and I was excepted into Nursing. So with a huge transition for my son and beginning a new chapter for myself, I haven't had the time to touch base on my progress.

So Im happy to report, I have had no set backs what so ever. I still, however have the dreams and nightmares of waking up back when I was at my worst. I really don't think that will ever go away as it was the most difficult stage in my life and I really thought it would never end.

I visit my support group on Facebook now at almost 5000 sufferers, to remind myself how bad it was and now to try and help others going through the same ordeal. The most important information I can offer is to show them how I am now and that the suffering does end. Life does go back to normal and its better than before the steroid use.

I continue to stick to a wheat, dairy, egg free eating plan to the best of my ability. I know when I have my cravings I expect a uncomfortable few days ahead :)

On a Nursing studies note. One thing I will find difficult, will be agreeing with the use of steroid creams. I am hoping that I can be an advocate for not using them especially on young children. I will somehow use my experience and evidence to get the word out there. The Facebook Page has been a great start with many members getting their stories out there through magazines, newspapers, webpages and TV.

If you would like to visit the page, click on the below link.
https://www.facebook.com/groups/212642132257327/

You will find many friends and so much information to help you get through the withdrawal stage.

Hugs and love

xo

PS Im on the left of the picture. A night out a few nights ago. Its great to get out again :) x

We have lift off!!! Finally we are on TV!!

Yesterday we reached a milestone for our quest to make people aware of Steroid Induced Eczema. Two of our Aussie warriors Jake and Libby made it to an Australian TV show called A Current Affair to discuss their ordeal of going through the withdrawal to become well again. I could hear cheers every where, our support page was going in a frenzy as we all felt a huge lift off our shoulders. "This will be the beginning of our quest to get the word out there". Steroids are dangerous and the doctors behind the over prescribing them, will hang their heads shame once they admit what they have done is criminal. They have ruined lives, taken away precious time and scarred us for life emotionally and physically.

The only thing we weren't happy with was the Doctor who thought we all had mental issues and there was no such thing. Well I beg to differ. I was told to do what I did and it was the doctors who wanted me to keep going with the steroids, it was me who finally said no. If I didn't put my foot down when I did, I'm 100 percent I would be a very sick woman by now.

So heres the link. Another warrior kindly videoed it for us and uploaded to youtube. Thanks a million Samara!! xo

https://www.youtube.com/watch?v=t-Swc7jop50&app=desktop

Have a great day and I will get back soon !!! Enjoy the TV show xoxox
Oh remember to head over to the support page at the below link :)

https://www.facebook.com/groups/212642132257327/

2 Years and 3 months Steroid Free and I have healed up well :) x

It has been a while since I have written and I have been promising myself that I would every time I jump on to my Facebook support page. And speaking of that we now have 2700 members all searching for the answers for their problem skin. Answers that most people seem to find on there and it's so satisfying seeing so many people on there healing up but at the same time it's gut wrenching to see people going through this horrendous journey that I also went through. I feel hopeless and tearful when I see them posting their graphic pictures up and more so when I see children. The only thing I can do is offer suggestions and give them hope that TSW (Topical Steroid Withdrawal) is real and there is light at the end of the tunnel.

So for me now at my 2 year and 3 months mark, I am looking the best I have ever been in a very long long time . A female thing but I'm pretty annoyed that I have put a tad of weight but I am going to put that down to watching too many movies and studying for the last 6 months (and the naughty food opps). Now that its all finished for now, I have serviced my bike and the kiddies and I will be getting on the bikes as much as we can. I haven't been on my bike for nearly 5 years as I've lacked the energy and I can almost put that down to the use of steroids and adrenal fatigue.

Getting deeper into the topic of how my skin is really going, well its completely free of any eczema or suspicious rashes. My inner thigh that were giving me hell for so long have completely stopped itching and hiving. I would say my inner thighs were the last to heal up and this is completely weird as I never in my whole life ever had eczema on them. I still seem to get swelling and stiffness in the legs later in the afternoon. I am wondering because of my age, this may not heal up but not entirely sure. I do recall a report from Dr Rappaport that people in their later years may experience some scarring and some side effects of the withdrawal may never heal up. Fingers crossed it will go with exercise.

My life in general has been absolutely amazing in regards to not being obsessed with applying creams and taking pills. I had forgotten what it was like to be free of all of that. I am taking greater care with what I eat (most times) and what I put on my skin. Food wise, I lead a wheat, egg and diary free life style. I do know now 100% for sure if I'm naughty and dying for some dairy chocolate or a wheat biscuit, I get itchy my stomach blows up. This last for a few days then Im back to normal.

A few products I have discovered that work for, you may want to try if you're in the later healed stages of TSW are below.

My first one is Little Birds Organic Coconut Moisturising Butter. I use this on  my extra dry spots if I have them such as elbows, knees and feet but also after being in the sun I lather it all over and its completely yummy. You can buy it from here from the below address or its also available at Coles Supermarkets and its around $12 on special which is not bad at all.
https://www.melrosehealth.com.au/products/MEL%20250

Sunblock has been a number one priority for the summer and after reading more into the ingredients of all sunblocks and a few reports from universities, I hunted down a natural sunblock for the family. Anything you put on your skin is going to go into your blood stream just like the steroids. I found this amazing sunblock and its called Grahams Natural Sunclear 30 plus. All I can say, where has this been hiding all my life. It goes on like silk and has an amazing subtle smell. No stickiness and its does leave streaks or smudges. It's a little on the pricy side at $29 from Echolife but Im telling you it's worth every cent and you won't get sick from it. 

You can buy it off this website at

http://www.echolife.com.au/products/grahams-natural-sunclear-natural-spf-30-sunscreen.html or head to your local heath food shop to buy it. I could almost use this as a daily moisturiser it that good. 

In a nut shell, my life is normal as it can be with two beautiful children and preparing myself for my gorgeous little man to start school this year. I'II add a few pictures below to show you "me" now. Its funny but I haven't taken many, so I must get on to that again too.

Yes I look like a dag with my floppy hat lol not mine I borrowed it for the day but did the trick . Happy healing lovely people. Remember to go to the Facebook support page at
https://www.facebook.com/groups/212642132257327/347024322152440/?notif_t=group_comment_reply
Send a request to join up, you will meet some amazingly strong people on there and make life time friends. I have met some gorgeous loving, caring people on there myself. Happy healing and stay strong, healing does happen. The proof is in the pudding :) xoxo

Month 17 February 2014

Well its a new year and I'm still not 100%. Pretty dam close though I have to say. My first accomplishment for the month of November 2013 was to climb the Sydney Harbour Bridge and I did it. I went along with my 71 year old mum and daughter 9 years old. It was amazing I have to say and we did it rain, hail, thunder and sunshine with no irritation. A huge step forward with the exercise too. I will have to say my legs nearly crumbled after we got back with exhaustion but once we got to the hotel, a good lie down fixed me right up.

A dip at Bondi beach. My first dip in the ocean and again with no irritation. Wohoooooo. My feet are on the right and my gorgeous little girls on the left. It was the best feeling in a long time.

Out and about in the sun. My skin was really loving the sun. After the 5 days of beautiful weather my skin was feeling extra soft and tanned. The best in a long time .

So in January we decided to head to Queensland for a summer holiday for two weeks. To my horror there was no bath and I nearly died. Eventually I convinced myself " I don't need a bath" Well the good news I made it through the two weeks without any panic attacks of wanting a bath. In fact I didn't have a bath for the next month after coming home. The showers were actually making me feel better. I guess too much soaking in the bath damages your skin too.  Heres my delicious little man being silly as he can during our holiday. My skin here you can see its very clear.

So the fear of the first swim in a swimming pool. DONE!! I started at my feet and eased my way up to my neck by the end of the two weeks. It was like learning to walk again. It was a chlorinated salt water pool but I had no irritation at all. I did of course have a bit of an itching attack at White Water World where the water is so highly chlorinated it stun your eyes.

Lichenification on my body has 90% gone so thats another improvement. I can still see some fine lines on the bottom half of my legs but nothing huge.  Heres my knee looking pretty good :)

Heres the same knee months ago for those of you didn't see it..lines lines and more deep lines errr :(  So know that they do disappear in time but it does take time for them to go and they will only go once the itching gets less as this is the main reason it forms. In the later stages if I was itchy I would try and rub if I could to try and prevent the war wounds. It worked for me but everyone if different :)

So my two little get aways gave me strength and confidence to get out and about and not having to obsess over bath time. My skin came back from Queensland super super good. I still get hives in-between the legs which drives me mad and my swelling in the legs has not gone away. Im wondering now if it ever will. hugs xoxoox

Oh PS don't forget to join our new Facebook support group we have set up.. Loads of people there to help and give advice....
https://www.facebook.com/groups/212642132257327/240382012816672/?notif_t=group_activity

Month 12 & 13 September and October 2013

Well I have been a little bit slack with the posts. I have been trying to catch up on things I have missed while I was ill. Enjoying time with the kiddies and getting away. I kind of thought by this time I would be completely healed but this monster continues to hinder part of my life still. I guess when you become chronically ill you sit back and realise the important things in your life and take hold of it more when your well again.

So for the last few months, I have had minor flares on my arms, behind the knees and inner thighs. The itchiness of the thighs have been toning down a bit but are still a pain in the butt in the mornings. I feel I can say I have good days and bad days. The mornings I still find I'm dry and stiff when I get out of bed. By the afternoon my legs still seem to swell and ache. If I sit too long they clamp up and I have shooting pain in my legs. So lying in bed or on the couch after the kiddies is my thing at the moment.

On the weight side I'm at a very healthy weight still.

With my little flares I am thinking it was more related to food I am not supposed to eat rather than TSW. I would have clear skin and if I ate something I would itch up over night but would be gone within three days of not eating my naughty treats.

Sleep wise is still up and down. I find if I go to sleep later at night and can get through without waking till the morning. But if I'd go to bed early say around 9-930, I will wake between 1-3 am with the itchy thighs. It generally takes me hours to go back to sleep if this happens. So frustrating.

On very happy note. When I head away, I am not so obsessed with what creams  & oils I am packing as I now know I will cope fine. I am on my way to Sydney for a little getaway with my daughter and mum soon which I am so excited about. It's my first holiday since starting TSW. Then hoping to go to Queensland for some much needed sun and salt water.

Oh and last weekend I went to my daughters school fete. It was 33 degrees. I was so nervous about wearing sun screen so I didn't. To my surprise, I came back looking very tanned on my arms and legs. Usually I always go red and very blotchy. I have been told that the steroid creams enhance burning of the skin. So now I'm not using them, my skin is back to normal when it comes to sun exposive...hooorrrraaayyy

Below are some photo's of my little flares. Nothing too hard to cope with except for the annoyance of the itch. This first one is the back of the knees. You can see that it's not that bad but I do have the scratch lines that just won't go.

The next one is my inner arm. Again the lines that won't budge and a little red and itchy. But nothing like I was months ago. So pretty happy :) As I'm writing this, I don't have the red itchy arms. We will see how tomorrow goes.

My face today, pretty clear. I have lines on my forehead still that won't budge also. Bugger bugger bugger. 

Here with my baby girl. She so happy I am up and about again. Dam that doctor, I lost so much precious time with my babies. 2014 will be a fantastic year for catching up and making the most of everything and being thankful that I am healthy and steroid free :)

 Cheers until next month xoxox

Month 11 August 2013

I can't believe I'm almost 12 months off steroids. Again although I may look pretty good compared to the first 6 months, I'm still waiting for the 100% healed celebration. I have been a bit naughty with the food this month and I have cheated my clean eating. My downfall from that red itchy skin in places like behind my knees, inner arms and face. So I'm in heaven munching on a chocolate frog but the day after itch, itch, itch. I've done that a few times to see if it's actually TSW or my food allergies. And yes food allergies it is. The side effects of withdrawing are still hanging around which are, swelling in the legs, itchy inner thighs and a bit of tight skin in the mornings and afternoon which I still find painful.

I thought I'd add some more pictures of my withdrawal this month to give you more of an idea what you will go through to get to the stage of steroid cream free living. And to also have a recap for myself as sometimes I need to look at myself how bad I was and to appreciate how I am now more.

But first here's a really good picture of me and my little man before the long coarse of steroids. Perfect clear skin. It wasn't long after this I stopped breast feeding and the first rash appear on my hand which prompted me to the doctors. Wish I could turn back time.

The following are a few before I went through the withdrawal. I didn't know what was wrong except each morning I wake up with a spreading itchy rash that just got worse and worse. The addiction was taking place and nothing was working any more. I was always covered in bruises too. I now know that steroids make you bruise very easily.

The next lot of pictures are stages from month one to current of the withdrawal. It was the hardest thing I have ever gone through. It certainly beat giving birth to two children, that was easy compared to this. Thank you doctors for taking away precious time from my life. I feel that I have around another 6 months to go before I'm completely healed but I can say it will be worth every inch of pain and suffering that I have gone through just to get my body healthy and working again normally. 

A very good example of the elephant skin everyone talks about whilst in TSW. Yes this is completely uncomfortable and challenging to walk!

 The swelling you can get is pretty intense. Some mornings I could barely open my eyes. My eye brows here you can see have fallen out. Looking very very pretty :)

My hand print on my leg to show you how red and burning the skin gets. Very very painful. I could describe it as being burnt by a fire. It blistered as well on some parts of my body. All this from stopping the use of steroid creams. And doctors say it safe! Yeah right..

 Check out the swelling around my neck. Elephant skin there also. At this time of my withdrawal I could turn my head to the left or right or up and down. Too much swelling and  skin to move it.

My tomato belly..red red and burning like mad..

 Turning a little white and turning a corner..

Almost no eye brows below but girls they do grow back and they grew back pretty fast compares to the hair on my head.

The famous red sleeve of fire. Always stops at the hand. A strange side effect of withdrawing. I never got anything on the palms of my hands..

One thing everyone mentioned whilst going through TSW. The white of my eyes were pure sparkling white and still are today.The eyes are the windows of health. They were never this white. They look like I have put some of those eye drops in them..Check them out below.

The good old purple legs. Mine looked like they were going to drop off. Its actually the blood vessels trying to work again after so much steroid cream applications. It constricts the blood vessels when the steroid cream is on your skin. End result when you stop using it is this below. And it extremely painful.

My belly below is how it looks today. I still have some scarring which looks like a c-section scare but its slowing fading. Constant scratching caused this.

So I have so many more pictures but I think the above gives you more of an idea of what happens. It's not for the faint hearted but if you're about to go through the withdrawal, this can give you an idea of what might happen. Everyone is different so not all the same things can happen. They can be more severe or less than mine. Hugs xooxo

This is me today at 11 months xoxox

 And to finish off this month, here's an excellent video of Dr M Rappaport discussing TSW and the causes. It explains everything you need to know and he's cured thousands of patients in the US of TS poisoning. My belly makes an appearance at the end of the video. It's worth a watch...

http://vimeo.com/68189383