Taming the Scratchy Monster Book

After a long wait, our lovely book, Taming the Scratchy Monster, has finally hit the printing press and is available to order from the Itsan website!

I wrote the book when I was going through a really tough time with my steroid withdrawal. My skin was oozy, tight, dry and uncomfortable. I knew that there were many people going through the same thing, including children, and I just wanted to do something.

Writing has been a great therapy for me during TSW. It has given me power over the illness. Writing about it has given me back some kind of control when it felt like my skin was completely out of control.

The first draught of the story was very long! I had the idea of writing about a boy who kept feeding a monster who kept growing and wouldn't leave him alone. The only way for him to be free was to stop feeding the monster and cross many perils, such as a dry desert, red river, oozy swamp and hot volcano. Each stage in the journey represents the harsh symptoms of TSW.

I sent the book to some Itsan members with kids, who gave me lots of advice about tweaking the story and making it into a picture book format. One particular Itsan member, Kristina, liked the story so much that she found a great illustrator to do the artwork to go with the words. The result is fantastic and Gloria's beautiful artwork compliments my words perfectly.

"Scratchy" was created by a young girl going through TSW. He is such a great character and was a lot of fun to write about. He perfectly epitomises what TSW is all about, as he is covered with itchy prickles and won't leave you alone. Little Keira, his creator, managed to heal completely from her TSW and, as she puts it, "Kick him in the booty".

In the last few months, I have also managed to kick the scratchy monster in the booty, as my skin has gone from bad to great. The book is about the experiences of all those who have healed from TSW, including myself.

100% of the money raised from the book will go to Itsan.

The book is ideal for kiddies going through this hell, but I also found it useful for explaining to my 3 kids how my TSW affects me. After reading the book, they "got it", straight away.

It is a great tool in our TSW armoury. I hope everyone enjoys reading it as much as we enjoyed producing it. Thank you so much to Itsan for having faith in our little story and putting it out to print.

Fantastic New Video From Itsan

Thank you Itsan for this wonderful resource. I hope the video will reach many, many suffering people and help them on their steroid-free journey.

Feeling Freakin' Awesome! (photos)

As you can tell from the big gaps in my posts, I am blogging less and living more. My TSW really isn't bothering me at all. I have a few blotchy patches, but the sunny weather means that most people out there are redder than me, which suits me fine.

In three days time I will be 20 months steroid-free.

Anyway, a picture tells a thousand words, so on with the photos...

I am super pleased with my neck and chest. This used to be one of my worst areas and took ages to clear, even oozing as recently as a few months ago. At worst, I couldn't turn my neck at all, so the fact that the skin is now lovely, smooth and clear is a major miracle. I thought this area would never get better. If you go back through the blog you will see how bad it has been in the past.

No, that brown band across my feet isn't dirt! It is actually my skin trying to tan through my sandals! I've got tiger feet! Tan is way better than red skin and my legs are nice and normal and smooth. Still need to get them to tan up to match the feet though....

My arm is tanned too, although the photo does not do it justice! Not a sign of TSW rash anywhere along the back of my arm, although there is a little bit on my inner arms, which is on its way out.

My face is nearly, nearly there! It is not red anymore, although I have the odd scratch mark where I have clawed at it in the night! At least I can see my normal skin colour again though. I forgot I was that colour. I don't gasp in horror when I look in the mirror now.

I hope my photos encourage those suffering right now. I read all the other TSW blogs and see what a hard time some of you are having it, so I hope my photos cheer everyone up. I really do feel that the sun has helped my skin, although those in the early stages of TSW should stay well out of the sun until the redness phase has diminished.

My thoughts and love are with all those going through tough TSW times right now.

Sunshine Doing Me Good

Finally we have a heatwave here in the UK.

And yes, it cleared that last flare right up. My skin looks and feels better than ever.

I am trying to get as much sun as possible on my skin because I can really feel the difference when I do. All the old skin flared off and left baby soft skin behind.

I will post photos as soon as I can, but I am busy playing in the garden with the kids in the paddling pool and don't have time today. I just felt I had to post because the last post was about me flaring and I didn't want to leave it on a bad note.

Things are so much better, I expect to be completely healed within a few months. I am as good as healed anyway.

Because of this I will be spending a lot less time on the blog and forums. It may sound a bit selfish, but I have had 19 months of this hell and I deserve a break. Writing and reading about it all the time gets depressing.

Don't worry, I'm not abandoning everyone. I will be back from time to time with progress reports, but there are enough new folks on the itsan forum and blogs to pass the baton on to.

What? Another Flare? Seriously?

Here I am, posting lots of happy healed photos on the blog and saying how I haven't flared in ages, when....yep, you guessed it.... I get another flare!

My last flare was 14th May so I have been very fortunate to have had a 6 week break between flares, which is probably the longest break yet!

 I want to reassure everyone that it was quite a mild flare and didn't really bother me too much.

Unlike previous flares that have affected my face, this one decided to bypass the face and go straight to the arms. It made my arms very itchy and sore, but at least I could cover them up with a long sleeved T shirt and nobody was any the wiser. In fact, I went to a party whilst I was flaring and people were commenting on how good my skin was doing, because my face was quite good and I had my arms covered up!

The worst affected areas have been my inner arms from elbow to wrist and my palms. The rest of my body is normal skin, so the flare has been very localised. It is dying down today and going from the wet hot phase to the dry phase.

My face is a bit red today

...and this is my arm today

So I guess I am not done with TSW yet.

I don't want these photos to discourage anyone, but I have to be brutally honest about how TSW affects the body.

You have good days and bad days.

Overall, I am on the up. My skin is a lot smoother and I am really noticing the difference. Small flares like this are just "blips" and I bet I will be back posting good photos again in the next day or so. The breaks between flares will get longer and longer, I am sure.

Going off on a tangent a little...has anyone looked at Dr Fukayas blog today? It is all about how incidences of "eczema" skyrocketed after the advent of topical steroids. My quote of the day is:

"..the number of patients with AD (atopic dermatitis) has been increasing after TS was produced and came onto the market half a century ago. There is no other disease that has a population of the patients increased after a medicine for the disease has been produced."

Makes you think, doesn't it?