Month 13: Lots of photos!

I thought I would post a few progress photos on here today, since I am celebrating the fact that the blog has just hit the 80,000 hits marker (hooray!). Its my "blogoversary" next month, so it would be great if I reach 100,000 hits after a year of blogging. Wow. I can't even picture that amount of people in my head!

Blogging about TSW is a great way to connect with people all over the world. I was touched yesterday when a fellow blogger told me that her mom and dad had phoned her up because they were worried about how I was doing since the last flare. It just goes to show that wherever we live in the world, the skin warriors are a big family and we really care about each other.

Anyway...the good news is that I am doing GREAT!!!! So I'm posting some lovely photos to encourage everyone to stick with it, even when things are tough.

You can see that my face has now returned to a normal colour and the redness is gone. The "nicks" in my cheeks and nose were caused by me scratching in the night. They should heal up OK and apart from that, I reckon this is the best my face has been yet!

This is my hand, with lovely, NORMAL skin! The only sign of TSW is a little bit of baggy skin on the knuckle of the little finger. This is so much better than it was a few months ago, when I remember having a clear demarcation line on the back of my hand between the normal skin and the red skin.

My leg! Sorry for the odd camera angle, but it is never easy taking a picture of your own leg! Again, the skin is NORMAL!!!!  Remember those nasty wet wounds that plagued me for months? Well now they are completely gone and I couldn't be happier. I may even be brave enough to wear shorts next summer!

My arm is almost there, but still a little bit pink. The "red sleeve" of TSW vanished a while ago. I had lots of redness on my inner arms previously, so to get to this stage is amazing.

My neck is still also a little pink, but again, this has been one of my biggest problem areas all the way through. I am quite happy with the way it is going and it is no longer stiff and sore.

I hope my photos have encouraged everyone. It is so hard to focus when we are in a bad flare, but these pictures are a reminder that we can all come through this and heal.

Month 13

Things are getting so much better for my skin.

I don't know whether it is a coincidence, but since I have been taking the starflower oil and rubbing it in my skin, good things are happening.

My skin feels good and the oozing has stopped. Even my eyelids have gone back to normal.

The sun was shining today too, so I managed to get some much-needed sun on my skin.

Happy happy happy.

Month 13: Photo

I am hoping that my recent flare is finally over. My skin is still a bit dry and a bit pink, but the oozing has stopped. Here is my latest photo:

As you can see, there are areas of normal-coloured skin on my cheeks and under my eyes, but lots of pink areas too, especially on my chin and around my nose. My nose is the pinkest area, which is really weird. The pink bits on my cheeks show where I have scratched, so I have taken to popping a pair of socks on my hands at night. Although my skin is far from perfect, it has a much smoother texture and it feels so much better. I have dryness around my mouth in the mornings, so I patch it up with a layer of hemp cream and moisturise my lips with lip balm. I should mention that I am sitting in the house with the heating on, so I may look a bit pinker than normal. I am really happy that there are normal areas of skin trying to peek through.

The rest of me is doing great. I can't get over how good the skin on my legs is looking. The skin is normal and very soft. I KNOW that the rest of me will be the same soon, so it is really exciting.

The blog now has had 78,000 hits and lots of people are waking up to the truth about steroids overuse. The Itsan forum is welcoming new "skin warriors" every day, some of whom are writing their own blogs, which I am really excited about.

When I look at my readership, I get lots of visitors from Europe, America, Australia and Asia. I don't get many visitors from Africa. I suppose this may be due to their lack of access to the internet, I'm not sure. I know many people in Africa use steroids to lighten their skin, so steroid addiction must be a problem there too. I hope that those suffering from steroid cream addiction in Africa will be able to find the blogs and Itsan forum and get the help they need. The world needs to know about this.

Entering Month 13....(photo)

I have decided to give up on counting the days of TSW. I think after a year, counting in days becomes slightly meaningless and it makes more sense to count up in months to give people an idea of where I am.

Therefore, I will just be entering the month in the title.

It seems that the horrific flare period that I have had since October 1st is slowly dying. The oozing has almost stopped, apart from on my eyelids of all places, and a bit at the bottom of my chin. I also have a small oozy patch underneath my bra-line, but at least I can hide that!

Here is today's photo:

As you can see, the skin is paler and has lost the redness and slapped cheek appearance of the last few weeks. My nose is a bit red and there is slight blotchiness, but the texture of the skin feels great and not at all scaly like it has been recently. I can actually smile because I can move my skin!  I am still a bit pink though. It looks like sunburn, which is odd when there is no sun....

My biggest problem is that my face feels "allergic". I presume it is some type of reaction to allergens in the environment. My skin feels itchy and it is hard not to scratch. Cue socks on hands again...

My eyes are a bit puffy in the mornings and have wet cracks in the eyelids. My face and neck are pinker than my body, which is normal colour.

I am taking cetirizine tablets (OTS antihistamines) to deal with the allergic feeling. They help but are only supposed to be taken once a day. Trouble is, the effects only last about 6 hours. I have thought about splitting the tablets and taking half in the morning and half at night.

Another thing I am trying is Starflower oil, also known as borage oil. I had a comment on the blog from a mom in Singapore who uses it on her child. I bought some yesterday in capsule form. I squeezed a little oil out of the capsule and rubbed it into my skin. It absorbed well and was not irritating or greasy. I then took the rest of the capsule orally with some water. I am interested to see how it goes.

I think if I can get past the allergic phase, my skin should be good. I reckon once winter kicks in and there are less mould spores in the air, things will get better for me. I am still stuck on the steroid inhaler, but don't intend to mess with the dose at the moment, as I really need it.

I actually went out last night, although I was a bit reclusive and didn't feel like talking much. I didn't want anyone mentioning my skin.

For any TSW'ers in the UK, we are planning a big meet up in London on January 12. For more info please check out the Itsan forum or Itsan Facebook page. I feel sorry for whoever has to hoover up after us, but it is a great opportunity to chat and compare notes with other sufferers!

By the way, I clocked my pageviews today on the right hand side of the screen 75,000 pageviews. WOW! If all of the blogs get this kind of readership, then we can really get this message out to people.

Thanks for reading, and here's to the next 75,000!

12 Months Off Steroids:How to Cope

During the last year, there are various methods that I have tried to relieve the discomfort associated with TSW. I would like to mention a few that have worked for me, although please bear in mind that everyone has different types of skin and just because something worked for me, it does not mean that it will be effective for everyone.

For me, the main aim of any product is to make myself as comfortable as possible. TSW is distressing because of the discomfort it causes, so anything that helps a person relax is of great benefit.

So. Imagine you are a person considering quitting steroid creams. Maybe you are. How can you prepare for the rebound of steroid withdrawal?

Well, first of all I would recommend reading up as much as possible on the subject. Become an expert. Visit the Itsan site and listen to the teleconferences with Dr Rapaport. Read the articles by Dr Rapaport and Dr Fukaya, but especially take note of the amazing healing pictures shown in these articles. I also have a list of blogs and articles down the right hand side of the page. Read them. Understand them.

Visit the Itsan forum where you will meet people at various stages of withdrawal. Some have healed completely and many are close to healing. Ask questions. Get answers.

At this stage you will have a rough idea of what chaos TSW will entail. Now is the time to prepare for it. Workers need to consider how they will cope and whether it is possible to get time off work or get a sick note from a doctor. Most people are completely incapacitated for the first three months, so unless you work from home, it will be very tough. Students need to try to allow for time from their studies or arrange to study from home for a few months.

Now you need to warn friends and family. Sit them down. Talk to them. Explain what will be involved. Could someone help with childcare or chores during your illness?

Get a survival kit ready. You are going to need it. You may wish to stock up on foods that are easy to prepare and nutritious. Trust me. You won't feel like cooking. Maybe a family member could prepare meals for you.

Prepare a cosy space. For me, this was on the settee in the living room. I covered the settee in a sheet to protect the fabric and brought down my pillows and duvet to create a cosy area. A silk pillowcase is an expensive, but useful way to calm the skin. At the beginning you will have extremes of temperature, so make sure that you are easily able to cool yourself by means of a fan, or warm yourself up with a hot water bottle or microwave pad. Make sure you have plenty of sheets as you will be washing sheets and pillowcases daily to begin with. Also, with bedding, it is good to have some way of propping the legs above heart level if they start to swell.

Also consider clothing. I liked my brushed cotton pyjamas! Loose fitting T-shirts are great, and so are baggy trousers or a long cotton skirt. It may be best to cover areas that you think you will scratch! A silk scarf is great for wrapping round the neck when it is oozy, as it mops up the goo. Do not wear synthetic fabrics or anything that sweats the skin. Natural fabric is best. Also consider the fact that you will be washing these clothes daily, and they will end up with bloodstains on them. I found that placing socks on my hands at night prevented me from scratching myself.

Consider how you will entertain yourself when incapacitated. you may wish to stock up on DVD's or books. I loved the computer, but found it hard to sit at my desk for long because my legs would ooze. A tablet may be a better choice. A handheld games console/phone is also good because it keeps the hands busy so they don't scratch!

When I started TSW, I couldn't cope without a morning bath in Epsom salts. Epsom salts are soothing and antibacterial. I would wake up feeling dirty and get into my lovely bath and feel refreshed, slip on my cosy clothes and snuggle up in my cosy area. It helped and made me feel relaxed. Not everyone likes Epsom salts, or baths for that matter. many prefer a shower, or like to bath in something oily. Find out what suits you personally.

Find a good moisturiser, although this is a tough one. Everyone is different. I can tell you that Body Shop Hemp Hand Protector worked for me, but it does not suit everyone. There are some good ideas on the itsan forum Try and get samples from shops and try them out. Our skin is hypersensitive and will react to most things! One thing I have just started using is borage/starflower oil. I split a capsule and rub into the skin.

The best thing for ooze is Domeboro. It is available in the US and UK customers can get it on Amazon. A sachet of powder made up in a pint of water will keep in the fridge for a week and can be used to make cold compresses. It is astringent and dries up oozy wet skin.

An antihistamine is a good way to get to sleep at night and helps with reactive skin. I like to use an OTC cetirizine tablet, which is cheap to buy in supermarkets.

Herbal teas were useful for me. I used a tea with chamomile and valerian in it to get me into a relaxed state and calm down at bedtime. I also use a dandelion and burdock tea to counteract the adverse effects of nitric oxide on my blood vessels.

I haven't found it necessary to change my diet during TSW and have not denied myself any treats! Most people lose a lot of weight during TSW as the body is working overtime to heal. Expect to get VERY hungry. I actually put on weight (boo).

As time goes on, you will get breaks and be able to do more. At this stage I would recommend getting out and getting active, even if it is a short walk round the block. Fresh air does wonders for the mind.

After about 6 months, you may be able to tolerate a little sunshine. Sun is great for TSW but it is important to only expose yourself to the sun when ready. Too soon and you will go red.

Consider starting a blog. The more the merrier! Communicate with those on the Itsan forum. It helps you to stay sane. Get active posting comments on eczema sites and blogs or helping Jonathon post the press releases on websites. It is good to feel that you are doing something constructive. TSW is 50% physical torture and 50% mental torture. Those who go back to steroids usually do so because they can't cope with the mental torture.

I hope these guidelines help someone. I am now at a stage where I have a decent idea of what works for me and what to avoid.

12 Months Off Steroids: Skin Changes

This is the second of my "reflections" posts marking a year off steroid creams.

Today I want to summarize how my skin has been over the year. Basically, this is the whole blog condensed into one post!

When I first stopped steroid creams, I had a couple of days grace before the wave hit me. My skin got a little red and flaky but nothing too bad.  I had been reading the google forum that later became the Itsam forum and I read many horror stories of people suffering with TSW. Was it really going to be as bad as they said? I mentally tried to prepare myself for the worst and told friends and family about TSW and the fact that I may be incapacitated for a while.

After a week or so, the symptoms of TSW started to kick in. My skin, starting with my face, started to turn red and burn, and yellow ooze started to come out of the skin, which was puffy and inflamed.

Soon I could not function normally. I was restricted to the setee, which became my new bed. I could not sleep in bed because I was oozing so badly. My husband took the kids to school and helped with the housework. I spent most of the day on the setee sleeping. My adrenals were damaged from the overuse of cortisone, which had fooled my body into thinking it was producing enough natural cortisone. When the creams stopped, my adrenals had to compensate, which left me tired and with erratic sleep patterns. I would wake regularly and lie awake for hours. My body wanted to sleep at about 7:00 a.m., which was when I needed to get up and get the kids fed and dressed.

I soon developed strange coping habits. A pillowcase wrapped around the neck helped with the ooze and socks on the hands stopped me scratching. I would drink plenty of chamomile tea which kept me relaxed and calm.

I would flare for weeks but get little breaks in between. The breaks helped me cope and prepare myself for the next flare. My body was in full rash and very painful. It made me cry that I could not hug my kids. I would just smile and hold their hands. My little boy asked me if I was going to die.

Most days I was a mental wreck.  I constantly doubted myself and wondered whether I was doing the right thing. I had to withdraw from many of the activities that were part of my weekly routine. I saw less of my friends and felt like a recluse. Many of my friends told me to give up and go back to the steroid creams for some relief and that it wasn't worth putting myself through this.

I started my blog, which helped me. The high point was receiving messages from others saying that the blog had helped them. If I helped one person, then I am happy.

The next big problem I had was when my legs started to swell. Walking was agony, but I still had to fetch the kids from school every day. The backs of my knees became cracked and rigid. I raised my legs whenever I got the opportunity. Wet wounds started to form on my calves. The wounds would not heal.

Here I would like to point out some of the ways that TSW differed from eczema:

My legs never swelled when I had eczema.

My skin did not burn when I had eczema.

TSW can cause a red rash that stops at the wrist, creating a "sleeve". Eczema does not do this.

TSW causes a weird metallic-smelling ooze to come out of the skin.

TSW creates wet wounds that are very slow to heal.

TSW creates a whole body rash. Eczema should not affect the whole body.

I am quite confident that I could tell the diffeence between a person with eczema and a person with Topical Steroid Addiction.

Anyway...to continue....

The breaks started to get longer and the flares seemed to get better. Then, in June,  nearly 7 months into withdrawals, I moved house. My skin initially flared with the stress of moving, but within a week or two, I experienced a big shift for the better and my skin really improved drastically. My face looked almost normal and friends would comment how well I looked. I got back into my daily routine and got back to socialising again. Life got back to normal from June to October.

By October, most of my problems seemed to be over. I wasn't posting much on the blog, because there was very little to report and I thought I was prety much cured. The wet wounds on my legs that I'd had since January finally disappeared and the skin on my torso was normal. I could even tolerate bubble baths again!

Unfortunately, the second "wave" hit me like a bomb.

I was feeling so confident about my "new face", that I stearted applying cosmetics again. Big mistake. After one night out, I returned home to notice that the whole side of my face was wet. This led to a massive flare of the left side of my face. My skin burned, turned red, oozed and flaked. It would cycle, but as soon as the dry skin had flaked off, the skin underneath would be wet and juicy again. My ears oozed fluid and sleeping became difficult again. I returned to using antihistamines and having socks on my hands at night. It felt like I was back to square one, even though my skin was normal from the neck down.

That brings me to today, mid November. I have now been flaring for 6 weeks, but things seem to be calming. The last lot of flaking does not have red skin underneath. However, the skin still feels puffy and wet and my eyelids have deep cracks in them that ooze fluid. I am sure that my skin is reacting to allergens in the atmosphere.

I am hoping that my facial skin will calm down completely within the next week or so. I am fed up of being stuck inside.

As for complete healing? Who knows? When I started this, I suppose I optimistically thought that I would be done in 6 months. Based on my healing pattern so far, I estimate that by Summer next year, I will be healed. My skin likes the sunshine! Many experts estimate 3 years for complete healing. I am happy to wait and see what happens, but I will not return to steroids.

Now for the big question? Would I tell other people to quit steroid creams?

Actually, no, I would not. I feel it is wrong to force my decision on others, especially knowing what is involved. However, if someone did decided to quit, I would support them 100%.

The decision to quit steroid creams is a PERSONAL one. We cannot force others to make that choice. If someone wants to quit steroid creams then they should arm themselves with as much information as they can before quitting.

HOWEVER>>>>>

People who use potent steroid creams long-term also need to be aware of the potential consequences if they continue blissfully down the "steroid road". If they know all the facts about steroid addiction and then still choose to use them they may be only prolonging the inevitable. They may eventually require stronger and stronger creams and be completely reliant on them, although this does not necessarily happen in all cases.

All we can do is inform others about steroid addiction. What they choose to do with that information is up to them, but once they know the facts, they are very hard to ignore.

The best thing is not to get addicted to steroids in the first place. It is a lot easier to cope with a little red patch of eczema on the leg that a whole body of TSW. If you have eczema, search for the triggers. Experiement with moisturisers. Stop using detergents.. Don't assume that steroid creams are the answer, but if you do use them, use them RESPONSIBLY and never for a prolonged period.

This "quick fix" can demand a lot back in the long term. I can testify to that.

Reflections 12 Months Off Steroid Creams

I suppose I have been thinking about this post for ages. I have had a whole year to think about this post.

"What am I going to write for my special anniversary post?...."

I am actually going to write a series of posts over the next few days, touching on various aspects of topical steroid withdrawal and how 12 months can completely change ones perception of things.

I cast my mind back in time......

I had been using steroid creams on and off since a very young age, but had always been "sensible" using them and had not used them long enough to get addicted during my childhood and adolescence.

This changed in my early 20's when, due to use of cosmetics, I started getting the odd patch of eczema on my face.

As someone who loved using makeup, I was horrified and attacked this "invader" with steroid creams. Of course, the eczema came back because I carried on using cosmetics, which created a cycle of eczema and steroid treatment. Before I knew it, I was blobbing a little bit of steroid on my face every day to keep my skin looking nice.

Over the next few months and years, the "eczema" spread and got worse, although I did note that this fine, red "eczema" rash didn't look anything like the rough eczema I had as child, which had always been limited to the backs of my legs and crooks of my arms.

My low point was when I got pregnant with my first child. By then, I had been addicted to steroid creams for three years and used them every day. My "eczema" got a lot worse during my pregnancy and I was in great physical distress as my whole body was covered. My dermatologist suggested that I cover my body in Eumovate ointment, covered in wet wrap bandages to aid the absorption of steroid. Of course, the effect was amazing. My skin cleared and was normal for a week or so, but the rash soon came back. Of course, I had no idea that this was steroid addiction and that I was "feeding it". I recall begging my doctor for more steroid cream when he decided to stop my prescriptions! I feel terrible that I used steroid cream every day of my pregnancy and shudder when I recall that I even used it on my nipple eczema when breastfeeding my son. Thankfully, my son is OK and had no adverse effects from my "pushing drugs" on him as a foetus.

Time passed and I started to rely on stronger creams to get an effect. Hydrocortisone did not work, Eumovate sometimes worked, but a lot of the time, I used the big guns like Elocon and Betnovate.

One day I was reading a book with my little boy. It had a mirror on the last page. When I looked in the mirror, it hit me how red my face was compared to his. I was shocked and after that, I hated looking in a mirror. By this point I was 5 years into steroid addiction and my skin had taken on a permanent red tinge, which was odd because I had always been pale during childhood.

Years passed. I had 2 more children and carried on using steroid creams. Prescriptions were usually issued without question, although occasionally, my doctor would ask to see me. I would show him my skin and he gladly signed for more steroid cream. One doctor told me to stop using the cream and that it should only be used for 5 days, but of course, when i tried this, the "rebound started". I presumed that the rebound was my eczema coming back, so started back on the creams.

My husband had been prescribed a cream called Fucibet (mixture of steroid and antibiotic) for his hands, which were cracked and sore. One day, when my face was particularly bad, I "borrowed" a bit of cream. I loved the way it made my face look, so I "borrowed" the rest of the tube, which had a warning not to be used on the face. I would then request repeat prescriptions on behalf of my husband, but really, I was using the cream. Still, it did not occur to me that I was addicted. It seems so obvious now.

I used the fucibet on my face for about 2 years, but noticed strange red marks appearing either side of my nose. I put more cream on, hoping that it would get rid of them (duh!).

Then the prescriptions stopped. The doctor would not prescribe Fucibet any more.

I panicked.

I freaked out. I NEEDED that cream! I was now 15 years addicted to steroid creams.

Then, I started searching the internet. I can't remember what I typed in, but I remember finding an article on Wikipedia about steroid rosacea. This was the beginning of my quest! It seemed that the red marks on my nose were caused by the cream and the good news was that if I stopped using them, I could go back to normal! Wow!

The next site I found was Kelly Palace's addicted skin site, which later became Itsan. On the site I read about a brave woman who gave up steroid creams and was now healed after a period of intense withdrawal. I also read articles by Dr Rapaport and Dr Fukaya on the subject. It seems that many people had been through steroid withdrawal and eventually healed!

Now for the bad part....

The withdrawal process was horrible! I saw pictures of people with swollen faces, oozing sticky fluid. I saw messages from people on the forum who were in agony, with swollen limbs and burning flesh. Withdrawal could take years before healing occurred. Was it worth it?

I also found some blogs from people going through withdrawal. I found Julianas blog, which was a timeline blog and saw her awful suffering revealed through photos.

Even though I had major doubts at this point, I decided to stop steroid creams.

I spoke at length with people on the forum, who were determined to hold my hand through the process. Fellow blogger Kelou was the first to welcome me and I also found a lot of comfort in the words of Joey, another skin warrior.

Within a week, my skin started to flare.....

The rest is recorded on this blog.

This last 12 months has completely changed my opinion of topical steroids and eczema. I believe that eczema is predominantly a childhood disease and in most cases, is quite mild, restricted to the backs of legs and crooks of arms.(Of course, there are exceptions to this). I also believe that most cases of eczema are grown out of by the early 20's although, in my case I brought about dermatitis by using cosmetics.

Many years ago, before steroid creams, there were very few cases of adults with eczema. I believe that many adults with eczema do not have eczema at all, but are addicted to steroid creams.

I also believe that adults with dermatitis would be better trying to find out the trigger (detergents, pets, cosmetics), rather than masking the problem with steroid creams.

When doctors prescribe steroids for babies, it worries me. I don't think that the doctors know the long term effects of steroid creams and it can become a habit to fill in repeat prescriptions. I wish all doctors could read my blog and see what topical steroids have done to me, so that they would have a better idea how to prescribe safely and give parents balanced advice about how to use the creams.

I don't blame anyone for the situation I am in. I don't think that anyone has really looked into the long term effects of steroid creams, as they are not intended to be used for more than one week. I just hope that the medical establishment and pharmaceutical companies wake up to the long term dangers of steroid creams, as I can only see the problem of steroid addiction getting worse over time.

Sorry to go on for so long...I'm in a bit of a waffling mood today!

Day 366 (photo)

I would sincerely love to be able to report something great, now that I am a whole year off the steroid creams, but sadly, I can't. This is my face today:

The crusty stuff round my mouth is what I call "skin paste". It is when dead skin flakes mix with the ooze coming out of the skin, creating a yellow, gluey mess that you can rub off with a fingernail. The skin underneath is red, raw and oozy.

My face feels wet, raw and burning hot. It is also extremely itchy and it is hard to resist the urge to claw at it with the fingernails and rip off a layer of dead skin. At night I can't sleep because the skin feels so wet. I lie on one side and my ear gets wet with ooze. I feel like I need to sleep propped up, with my face not touching anything.

Things feel really bleak right now. My skin has been like this since the beginning of October and shows no sign of improvement. I go out when I have to, but don't feel very sociable. In fact I am very embarrassed talking to people.

I really need a break. I have never had a flare this long, ever, so I can't understand what is going on. Is it something I have eaten or used? I wish I knew what was causing this. Will it go away by itself? I don't want to shut myself away forever.

I am dreading going to bed tonight. My skin is a fright when I get up in the mornings. I feel like my progress is going backward. I just wish I understood what was going on. The way I understood it, the skin renews itself every 28 days, so why is mine flaking all the time?

Day 363 British Weather and TSW

I'm continuing with my Moogoo tub samples, but just get the feeling that they are not quite moisturising enough for me. My skin is tolerating the creams really well, but feels dry within about 10 minutes. I need some heavy-duty grease on this flaky face! I think that when my skin calms down a bit, then the Moogoo would be more effective as a maintenance cream, so I haven't given up on it yet. I really like the ethos of the company and the fact that all of their stuff is natural and edible.

The cold British weather is doing me no favours. The morning school run has me facing biting cold winds, then I am back home, drying out from the central heating. Then I'm back out in the cold again. At bedtime my bedroom is freezing cold so I bury myself under the duvet which sweats my skin. No wonder I'm flaring and flaking. At the moment, I look like I have a beard of flakes round my mouth. It ain't flattering! I'm getting through mountains of lip balm, which I apply around, as well as on my lips!

My little boy came out of school the other day with his hands covered in peely PVA glue. It reminded me of the skin on my face. it is like my face has been pasted in PVA glue and it is hard to resist the urge to pick and peel the skin, as the flakes are really big and it is strangely satisfying to pick off a massive piece of dry skin (sorry, gross!). I feel like I have a permanent face mask on, but it never reveals anything nice and new underneath...just more peely skin!

The rest of me is pretty good, although I did notice a rogue patch of red skin on my neck. I also have a big lump on the back of my neck, which is a common side effect of TSW and can be due to enlarged lymph nodes. Either that, or I'm growing a new head.

I need some sunshine in my life!

Day 362 Moogoo Review

I'm slowly improving. I'm still really flaky round my mouth though.

I've been getting out and about more after my self imposed "shut-in" period during my bad flare.

Of course, I'm totally paranoid about people saying stuff about my skin and of course, they do! I bumped into a friend that I hadn't seen for a month. She was like "Oh man! WHAT HAPPENED TO YOUR FACE????" I handled it quite diplomatically, but I felt very sad inside. I just hate it when people notice my skin.

I've been trying the Moogoo cream that so many people recommend. I emailed the company and they sent me some free samples wrapped in a lovely package of brown paper and string. The creams are all made of good stuff and are even edible. Many people have had good results with them. The good news was that I didn't react to the creams. The bad news was that they didn't seem to moisturise me enough. My skin still felt tight after use. I will carry on with them and see whether things improve. The creams I am using are the irritable skin balm and the MSM cream.

Day 359 (photo)

FINALLY!!! Things seem to be improving!

This is my face today:

Right...so I know I'm not quite ready to enter Miss World just yet (maybe next week!), but my skin is feeling SO much better. As you can see, there is a lot of flakiness around my mouth, but that is just end-of -flare dryness and isn't that terrible oozy stuff that has been plaguing me recently. I have lots of nicks around my nose where I have scratched and picked the skin in my sleep, so I am going to go back to wearing socks on my hands for the next few nights to give the bleedy bits chance to heal up.

Mentally, I am holding up well. We went shopping at the supermarket this morning and I bumped into a dear friend that I hadn't seen for a couple of months. We were talking for ages and I didn't feel self conscious or embarrassed. I usually want to hide my face when I am talking to people, or get away as quickly as possible, so this was a big breakthrough for me.

The texture of the skin feels better too. For the last month, the facial skin has felt scaly and rough. Now I can actually feel the new skin coming through and although there is a powdery dryness to the skin, it is not "crocodile skin" anymore.

Once all this flaky stuff has come off, I may look normal again. The skin on my legs is now virtually normal and a world away from the open wounds I had earlier in the year. My arms are also really good, just a little dry, but I can live with that after what I have been through this last year.

All in all I'm upbeat and positive today, and the sun is shining too, bonus!

Latest Itsan press release: Jack's Story

Seven months ago, Jack needed to be hospitalized for his “incurable” eczema. Jack was plagued by eczema over his entire body, with a strong concentration on his thighs, buttocks, and face. Over the course of three years, Jack was treated with the strongest topical steroid cream, Kenalog injections (a type of injection containing corticosteroids), and prednisone (oral corticosteroids). Even with intense treatment, the eczema would not clear up.

His skin is now healing thanks to expert dermatologist Dr. Marvin Rapaport and the support of the International Topical Steroid Addiction Network.

When Jack was hospitalized, the doctors were very concerned about Jack’s health but doubtful about the possibility of being addicted to topical steroids. Despite this, they respected the wishes of Jack’s mother (Jill) and did not give Jack any steroids.

“I think they started changing their way of thinking when all the tests they ran came back just like Dr. Rapaport told them they would, as well as everything else he told them would happen and not happen came true as well,” Jill said. “We had many doctors and nurses join them on their rounds each day asking more and more questions and reading the articles I brought. Hopefully a seed has been planted to start looking at other options rather than just prescribing steroids as their first line of defense for eczema.”

Jill’s pediatrician was also skeptical the first time she brought in Dr. Rapaport’s articles about topical steroid addiction.
“She agreed to read them with an open mind. She had said for years that she always feels like we missed something with him because his eczema just got worse and worse. After she read the articles, she became more and more interested. She spoke with Dr. Rapaport and has worked with us and him throughout this whole process and has been so supportive,” said Jill.

After seven months of withdrawing from steroid medication, Jack now has healthy, clear skin.

“The eczema cleared up. For the first time in his life he is starting to show confidence in himself like I’ve never seen before,” said Jill. “Probably one of the most amazing things is that for the past four weeks that he has been back in school, he has worn shorts and a short sleeve shirt every single day! Jack hasn’t worn anything except jeans and a zipped-up hooded jacket, even in the 95°+ degree heat, for the past 3+ years.”

Jack’s pediatrician says his experience has already changed the way she is treating children with eczema and she uses Jack’s story as an example. “She has been amazed at what Jack’s body has gone through,” said Jill.

Jack is proud of his accomplishment and that he has been able to help others through his suffering. “My story has helped save other little kids already,” Jack told his mother.

Slowly (but surely) the word is getting out about topical steroid use and eczema. “Jack still has some bad spots and still has some flares here and there. All I know is although we still have a way to go, his skin now looks the best that it has in over four years.”

About The International Topical Steroid Addiction Network

ITSAN was officially Co-Founded by Dermatologist Dr. Marvin Rapaport, full professor at UCLA Medical Center and the nations leading expert on the subject. Kelly Palace, Co-Founder and president, was one of the 2,000 patients that Dr. Rapaport treated and cured. An online community of over 100 patients with this condition also contributed ideas, money and inspiration to start ITSAN. For more information please visit http://itsan.org