Saturday, 19 November 2022

New TSW Website by Briana Banos

 Hi TSW community! I know I don’t update this very often, but I wanted to let people know about an amazing resource from TSW veteran Briana Banos. She has just started her own website about all things TSW and it is full of useful information.

Most in the TSW community will know of  Briana but for anyone new to this, she has been an active TSW advocate for about 8 years now. She was the first person to create and produce a documentary about TSW called Preventable, which you can watch on YouTube. It’s a must-see for anyone interested in topical steroid withdrawal.

Anyway, get on over to her shiny new website and take a look!

Wednesday, 11 May 2022

Reopening my TSW archive

Hi folks. Back in 2016 I closed this blog down and archived all of the posts. 

 It was a difficult decision at the time. The blog was at the peak of its popularity and there was clearly a great demand for information about TSW. People may have thought me selfish to close down something that was such an important resource to people going through TSW. However, I had my reasons. 

I'd healed from TSW and no longer wanted to be a part of that world. I quit the TSW forums, quit blogging and shut everything down. I didn't want to be reminded of that painful part of my life. I was healed. My skin was normal again and I felt well. Life went on and I got a wonderful job which I love, and was able to enjoy time with my family. 

 In the TSW community, an inspirational new generation of people ran with the baton and continued the work that ITSAN started. Social media allowed awareness of TSW to spread to a much bigger audience than we could have ever dreamed of. Documentaries were created, TSW was featured on TV and in the news. It was even recognised by the medical establishment and main eczema charities; something we had worked so hard for back in the early days.

So I felt my work was done. In the 6 years since I closed the blog, I have continued to thrive post-TSW. Life is good. 

 However, I still felt a little selfish having archived all the info on here. I spent a LOT of hours creating this blog and it seems a shame to have it mothballed for eternity. 

 Sooooo...I made the decision to reopen the archives. Bear with me while I do it please. I need to check over a lot of the old posts and also check that the links still work, so it may take time. (*UPDATE all old posts have now been checked and uploaded. The complete blog archive is here.)

 I want people to be able to see that TSW is something that had an END for me and that might give you hope if you are suffering. Its what I would have wanted to know when I started this journey back in November 2011.

 Closing the blog down for 6 years was the right thing to do at the time. It enabled me to enjoy my newfound health and distance myself from the suffering I'd been through.

 But now its time to reopen the doors and welcome friends old and new.

 The gates are back open. Welcome back.

Wednesday, 16 March 2016

Huffington Post Article on Topical Steroid Withdrawal

Sometimes we just need a blast of positivity to help us through the hard times. That is why this Huffington Post article is so lovely. It lists a bunch of positive things about TSW. I'm not sure that I'd ever describe TSW as "awesome," but maybe it would help our collective mindset if we started thinking that way!

I did have to laugh at the part about smelling good, though. Anyone who has caught even a tiny whiff of TSW ooze in their nostrils after a sweaty, unsettled night will definitely wonder what that one is all about. Maybe it's time to invest in some clove oil...

Let's all be inspired by the article and try and be a bit more positive today. It will do our minds and our bodies good.

Wednesday, 24 February 2016

Big Pharma Make Big Profits

I saw an interesting article in the Daily Mail today about the underhanded methods employed by the big pharmaceutical companies in order to maximise profits.

Of course, those of us going through TSW will be more than aware of this!

Monday, 22 February 2016

Insomnia Part 1: Kalms Night Review

Most people with Red Skin Syndrome will have likely experienced insomnia at some point during their steroid withdrawal. This is likely because of the link between the stress hormone cortisol and sleep. Long term use of steroid drugs interferes with our HPA axis and could explain why insomnia is so common in TSW patients.

In normal people, the cortisol levels are lowest around midnight and highest about 8 am. This promotes a healthy night's sleep. When our natural rhythm is disturbed, problems can occur.

I bought a fitness tracker back in December and one of its functions is recording my sleep patterns. I immediately noticed a recurring pattern with my sleep cycle. It takes me a long time to get to sleep, even if I go to bed early. I dont usually fall asleep until about 11:30 pm. I then go into a very deep sleep for an hour or so, followed by a light, broken sleep. At around 3-4 a.m. I wake up and them I'm wide awake for an hour or more. I'm usually hungry too, which I believe is due to low blood sugar levels. I then drop off again and enter a really deep sleep cycle, which is unfortunate, as it coincides with when I have to wake up. When the alarm goes off, I'm really tired and shaky. If I don't set the alarm, I will have a deep sleep cycle between about 5-8:30 a.m. and then wake up. So basically my sleep cycle is the wrong way around.

Over the next few weeks, I'm going to be trying different things to help my insomnia. The first thing I've tried are Kalms Night tablets which cost about £5 for 50 pills. They contain valerian root extract as the main ingredient.

I was surprised that the nightly dose was 4 tablets. This means that each pack only has enough pills for 12 nights. The tablets were sugar coated and easy to swallow and tasted pleasant.

I have nearly finished the pack and haven't noticed any difference in my sleep pattern. The fitness tracker data confirms that my patterns have been exactly the same as when I don't use the tablets.

Therefore the Kalms Night tablets didn't work for me, unfortunately.

Back to the drawing board. I'll be trying more remedies soon in the hope of finding the elusive cure for my insomnia.

On the plus side, my skin is REALLY good right now, but more on that in another post!

Sunday, 24 January 2016

The Dangers of Steroid Cream Addiction in the News

I was glad to see another Daily Mail article featuring TSW today.

A lot of people in the TSW community will know Jake And Libby and their amazing story of Jake's full recovery from dependence on steroid creams. It's a great reminder that it is possible to heal from this condition and that there is light at the end of the tunnel.

Thank you so much Libby and Jake for all that you do in raising awareness!

Friday, 22 January 2016

Topical Steroid Abuse in Taiwan

In Taiwan, even the most potent steroid creams are available over the counter without a prescription and this is causing big problems for dermatologists who have to deal with the aftermath.

Since a reporting system was set up, hospitals were reporting over 500 cases of topical steroid abuse a month, according to Focus Taiwan News.

We are thankful that organisations like ITSAN exist to support these people through what is likely to be an horrific withdrawal phase.