Hit With the Ugly Stick...AGAIN!!!!

Here is a photo of me today. Flaring again. Yuk Yuk.

Past The Quarter Mil!

A big thank you to everyone who has visited my blog so far.

In two months time, the blog will be 2 years old. In one month, it will have been 2 years since I stopped using steroid creams.

I just passed the 250,000 pageview marker and it feels so fine!

The video is just a shout out to all the TSW'ers out there. The monster on here looks just like Scratchy Monster!

Enjoy.

x

Day 5 of Bad Flare..Finally Dying Down....

My skin started to improve a lot yesterday. The redness and burning stopped, I was sleeping better, the crusting and oozing had stopped and the skin was starting to go flaky, which is a positive sign indicating the end of a flare.

This is me today:

BIG IMPROVEMENT!!!!

The skin has gone back to normal colour and all that is left is some flakiness, which is the top layer of skin sloughing itself off after the flare.

I hope that the blog readers have found the last few posts useful as a documentation of what happens during a flare from start to end. Thank you to all the readers who left kind messages of comfort during my flare. I wish speedy healing to you all.

Last October, my big flare lasted one month. This one has lasted 5 days, which proves to me that the TSW effects are getting less powerful over time and my body is fighting back. I really hope that I will be done with TSW in Summer 2014.

Also, a big thumbs up to the fantastic itsan forum, which has been a source of help and comfort to so many people suffering with TSW. We just admitted out 500th member a few days ago, so the word about TSW is gaining momentum. This blog alone is nearly at the quarter-million view mark and I am grateful that I have been able to join the army of bloggers bringing publicity to this condition.

Onward and upward, people!

Day 3 of Bad Flare

I had a really bad night last night. I was super itchy and very conscious of my face touching the pillow and getting sweaty. It seemed impossible to get comfortable and my facial skin was radiating a lot of heat. I woke at 2 a.m. and couldn't get back down so I went downstairs and did myself a cup of chamomile tea, finally dozing off again at about 4 a.m.

When I got up, I expected my face to be a gooey mess, but was quite surprised to see that I had scratched off most of the dried-on crust in my sleep, leaving the skin looking smoother, albeit pink and slightly raw.

Today I managed to:

Take the kids into school.
Talk to one of the parents.
Sit through a meeting with a teacher.
Go to the local shop for some groceries.
Fetch the kids (chatting to another mom and another teacher!)

These are all things that I would not have been able to do yesterday, so I am feeling more confident again.

I still think I am in a flare though, because my skin feels warm.

Here is today's photo. if you compare it with yesterday, it looks WAY better.

Not perfect, but a lot better! and the "zombie eye" has gone away too!

Looks like I am moving in the right direction again.


Someone posted this comment on the Itsan forum today. I hope she is OK with me putting it on here. It just seemed really profound to me.

"My husband is in the protection & safety business ... he deals with a lot of rape victims ... not only rape victims but general victims of some kind of trauma (we live in South Africa ... crime & rape capital of the world)

These trauma victims all have one thing in common:
every year about the same time when the traumatic event occurred they have a set back (emotionally, sometimes spiritually and often physically).

TSA is a TRAUMATIC event and the only thing that makes sense to me is that your body is going through a temporarily "set back"... it makes sense to me as it is round about the time when you stopped Steroid use and your tsw journey started ....

Someone once told me just as a wave starts rough and intense (during high tide) ... it eventually turns into low tide ... until it reaches the point where the wave just gently flows over until it finally disappears."

My big flares have been at 11 months and 23 months. Maybe she has hit upon something really important here. It definitely rings true in my case anyway and I would be really interested to see if this happened to other TSW'ers too.

Day 2 of Bad Flare: Ooze and Crust

I slept better than I thought last night, although I did wake a few times and seemed constantly aware of the itchy, sore skin on my face and tried to keep it out of contact with the pillow.

My face oozed buckets of plasma serum yesterday and it has all dried to a yellowish crust on the one side of my face. I actually found out lots of interesting info about why we ooze plasma, but I will save it for another post, as it deserves its own slot.

So today I'm looking a bit crusty. I took two photos; one in natural light and one in artificial light because I wanted to show how bad the crusty bits looked.

(apologies for the "zombie eye" on that one, I must have been looking up when I took the picture, although I do feel undead today!)

I took this second photo in the bathroom with the light on. The crusts don't show up so well on this picture, but you can see how red my flaring skin is.

I spend a huge chunk of yesterday crying, wondering why I am flaring again. if you scroll back to October and November of last year, the photos look very similar to what I went through then.

I keep telling myself in my head that this is the last big flare and I am going to have perfect skin next week.

I gotta have a dream.....

Flaring Again at 23 Months...

TSW is cruel.

It will lift you up to the highest peak and then drop you, smashing you hard into the pavement.

Just last week, I was admiring my lovely smooth skin, thinking that was it, I was almost clear.

I even posted a comment on the blog to someone, saying that I was "pretty much done" with TSW.

My skin had other ideas.

After a lengthy calm skin phase, my skin decided to rebel on me again. October has really started to kick in after a prolonged, sunny Summer and now we are back to dark mornings and relentless rain. It seems no coincidence that my skin flared badly this time last year and that at this time of year i also have a peak in my allergy and asthma symptoms.

Anyway...you wanna see pictures? If not, turn away now, cos these ones are particularly ugly.

I had to take the photos in the bathroom. I usually take them by my back door in natural sunlight, but there isn't any sunshine today and it is too dark to get a good photo by the window, so I came to the bathroom. You can see that the one half of my face is all puffy and red and that I have massive bags of excess skin under my eyes. You can also see the contrast between my facial skin and my neck skin, or the skin by my ear, which is a normal colour.

Oh dear, I look very miserable, don't I? Here you can see the contrast between the two halves of my face. I look like I have been slapped in the cheek and punched in the eye. Very attractive. Not!

As well as looking like a tomato, my skin feels like it is burning and I have also had some very slight oozing after months of no oozing.

I'm going to find myself a rock to hid under until the flare is past.

I HATE TSW!!!!!!

Moisturiser Addiction

So today I am going to revisit a subject that I touched on last year in this post.

The subject of the post was moisturiser addiction. At the time, I had considered a lot of evidence to show that the skin can get dependent on moisturisers and decided to stop using them. I only lasted a couple of days. The tightness and cracking kicked in and was unbearable. I applied moisturiser and got sweet relief.

However, I read a really interesting report over on Tommy's Skin of Rose Blog, which I think everyone should read. The post was about a conference in Japan all about TSA. In Japan, they are a lot more advanced than the West when it comes to steroid addiction. Two doctors, the Doctors Sato, are pioneers in the field and have helped cure many people.

When I read the post, one particular quote jumped off the page at me:

"I personally have an impression that moisturiser withdrawal is still seen as an unfamiliar idea even among TSW patients. However, the doctors on the event all agreed that moisturiser withdrawal was 'usually essential' rather than 'encouraged'. I knew it was a good thing to do, but thought it was optional at the time I wrote the post. They explained that only about 10% of TSW patients healed without moisturiser withdrawal, and they were all mild case patients. TSW patients who recover well are usually doing moisturiser withdrawal strictly, according to the doctors. Even children can be addicted to moisturisers. Dr. Sato said that wiping off oozing or picking up scabs could be 'moisturisers' to your skin.  "

OK. This sounds quite worrying. Only 10% healed without moisturiser withdrawal? Eek.

As you may guess, the itsan forum has been positively buzzing with debate on this issue.

I am not a doctor and certainly not in any position to offer medical advice on this subject. People have to decide what is best for them. However. I though I would write a list of Pros and Cons on the subject to help get things into perspective.

Pros:

• The idea of moisturiser addiction makes sense. Think about it. If you apply moisturisers to the skin, the body will feedback that it is getting enough moisture. The skin will then stop producing as much natural oil because it falsely detects that it is getting enough. As the skin's natural moisture levels decrease, the patient has to apply more moisture to the skin, thus creating a cycle of moisture replenishment.

• The doctors Sato have a lot of experience treating TSW in Japan. Their findings are a result of many years studying those going through TSW.

• Moisturisers are full of nasties. Preservatives, fragrances and other ingredients can irritate the skin. One can be applying a moisturiser without realising that they are allergic to one or more of the ingredients. Ingredients in moisturisers can be highly irritant or even carcinogenic. I read an interesting study in the New Scientist, showing that when researchers applied certain creams to hairless mice and exposed them to UV light, they developed cancers. Of course, they argue that mice and humans are very different, but would you want to take that risk?

Cons:

• Its all very well saying stop moisturising, but the fact remains that it is very difficult to do. I tried it. My skin was tight and flaky. I gave in! In the case of full-body TSW flares, movement may be severely restricted without moisturisers.

• We can't all hole ourselves away in the house. I have to take my kids to school, go shopping and generally interact with people. I wouldn't feel comfortable doing that with a cracked face.

• Letting skin dry out will damage the natural skin barrier. The skin will crack and may even bleed, leaving the skin at risk of secondary infection.

• Dr Rapaport and Dr Fukaya are also leading doctors in the field of TSW and have treated thousands of patients with the condition. Nowhere in their medical reports have they mentioned moisturiser withdrawal. *It has however, been brought to my attention that Dr Fukaya has since mentioned moisturiser addiction in his personal blog. The overall thought conveyed by his blogpost is that moisturisers are probably best avoided, although should be applied sparingly if necessary to comfort.

•  I also personally know of quite a few fellow bloggers and Itsan members who have healed whilst using moisturisers. Jake, Rochelle, Tracy, Juliana, Karen and Keira to name but a few, now have clear skin but did not have to resort to moisturiser withdrawal.

In Conclusion:

I am on the fence really! I do not think MW is essential to healing, but it may certainly speed it up. Those who have managed to break through the pain barrier and tough it out seem to have had good results.

I think the body sorts itself out when left to do its own thing. During the course of TSW I have found that my skin oils have returned by themselves and now I do not have to moisturise my body at all. The skin on my face is still tight though and I do apply a very thin layer of cream once a day to my chin and cheeks, purely for comfort and movement.

Again, I want to mention that Dr Rapaport claims to have successfully healed over 2000 people from TSW without having to resort to moisturiser withdrawal.

As far as I know, there are not any published medical studies on this subject (unless there are any in Japanese). I hope that this will change into the future and that studies will shed further light on the matter.

My opinion of the issue echoes that of Dr Fukaya, who seems very balanced in his approach. He states:

"...They recommend not use any moisturizer though they know the method is really a hard-landing......So if utilizing any moisturizer is comfortable for your skin, it is not necesarily wrong to apply it. However, it is not a right idea if you think moisturizing is absolutely useful or necessary for the damaged skin. "


I would love to know your opinion on this subject and please feel free to comment below with your experiences of moisturiser withdrawal.

Interview With Scratchy Monster

Since the release of theTaming the Scratchy Monster, everyone's favourite villain has been on a bit of a world tour. We welcome him into the studio for a rare interview.

LJ Hey Scratchy, how is it going?

SM Pretty hectic. Since the book release I have been going global. Whew, its tiring. Itsan has been shipping my book out to lots of different countries, in the hope that my story will help kids going through TSW.

LJ Sounds interesting.

SM It is. To date, Itsan has shipped over 100 books around the world and we are getting lots of great feedback about the story.

LJ Tell me about your adventures in Singapore....

SM A nice lady called Grace has a shop over there and decided to stock my book because it would be useful for parents and kids.

LJ Great. It looks very smart on the shelf there. Very eye-catching.

SM Yeah, I do look pretty good on that cover art, don't I? I think Gloria captured my good side.

LJ So tell us, are the Facebook rumours about the book being translated into Japanese true?

SM Couldn't possibly comment...I always thought my story would look fantastic as an anime cartoon though...

LJ So I hear you are gaining a bit of a fanbase with the parent bloggers out there.

SM What can I say? I'm just so darn lovable. Did you know that one little girl even wrote a song about me?

LJ Yeah, I heard that. Wanna sing it for us?

SM (out of tune)

"Itchy Monster, you're not on me!
Itchy Monster, you're not on me!!
Itchy Monster, you're not on meeeeeee!!!
Never, never, no, never ever! Not on meeee!!"

Sissy wrote that. She thought it would cheer up her baby brother Isaiah. You can read about him on his blog.

LJ I'm so glad the kids are loving the book. One more question Scratchy, when are you going to leave me alone for good? I'm still a bit itchy after nearly 2 years off steroids.

SM Yeah, but you used them for 15 years! You can't expect me to give up on you that easily.

LJ I will beat you Scratchy Monster!!!


Taming the Scratchy Monster is available via Itsan.org. All money raised from the book goes directly to Itsan to raise awareness about Topical Steroid Withdrawal.