Just an Encouraging Word...

I know how hard TSW can be.

If you are reading this, you may be in the early stages of TSW, experiencing the burning, intense pain, oozing and redness.

You may feel you cannot go on.

I felt like this many times. I often questioned myself and wondered if I would ever get better. Every time I went into a flare, I would experience terrible despair.

I just want to let you know that it does get better. Progress is slow, but things do improve.

Over the last few weeks, I have experienced positive improvements in the way that my skin feels. The oils are returning and many areas now look normal. I often doubted that I would get to that stage, but I have.

I can live my life normally, without worrying about the way that my skin looks. It looks better now than it has done in many years.

I hope that these words strike a chord and help anyone who needs a bit of encouragement right now.

Wow! 18 Months Off the Steroids!

I hit another benchmark today: an amazing 18 months off the steroid creams.

I always feel pretty good when I hit a landmark like this. I remember celebrating a week off, then a month off, 100 days, 250 days and 12 months off the creams. Then I stopped counting up in days and started counting in months. Here I am at 18 months and it feels good. Celebrate the little victories, and the big victories will come your way too.

The last 6 months have been crazy. To be completely honest I did think I would be healed by now, but TSW is a long process and results can vary based on time used, steroid potency, frequency of application and other factors. In these late stages, the weather seems to have a dramatic effect on healing. A little sun clears my skin right up. Unfortunately, here in the UK, we don't see much sunshine.

After a healing phase last summer, my skin hit a huge second flare at 11 months, which lasted for several months. I have learned that this is not uncommon, and many people on the Itsan forum have experienced the same thing; a shock flare at 11 months. This is why I feel it is so useful to log the TSW process. Patterns will emerge, I am sure.

Speaking of which, I am so happy about the rise in the number of TSW blogs. look, the blogs are filling the column on the right hand side of the page! I think there are over 40 blogs now, which is wonderful news. We are creating something special that cannot be ignored. Of those 40 bloggers, at least 5 have healed completely and no longer have any rashes. All of the bloggers are at different stages of TSW, but it will be wonderful when we have all posted our final healing photos. Take that, doctors!

When I first found Kelly's addicted skin site, the precursor to Itsan, there were only a couple of TSW bloggers out there. The forum was made up of about 10 individuals battling TSW. It has been great to see how their skin has improved over time. Itsan seems to have bloomed into this huge organization, with many new people accessing the forum every day.

I have had plenty of highlights in the last few months, including receiving an award, meeting fellow bloggers and writing a book (still pinching myself on that one!).

My skin is good. The skin seems to have healed on a deeper level and feels much more supple and elastic than previously. Any blotches and scratches seem shallow and superficial; not deep like before.

My blog readership is almost 170,000. I am shocked and humbled. Thank you.

Flaring Again at Almost 18 Months (photos)

After the recent sunshine, my skin was doing really well. I could feel it healing; it looked good and felt smooth. Unfortunately, the sun has now gone again and we are back to the cold, rainy weather, which has undone all of the hard work and improvements.

I hate putting flare photos up on here, for fear it may discourage those in the early stages of TSW.

"What? She's still flaring at 18 months?"

Well, no. 18 months in a weeks time actually. I may be fine when I finally hit the 18 month mark. Who knows?

Yes. I have to be honest. I did think that I would be finished with all this by now. To be still flaring at nearly 18 months is a huge kick, both physically and mentally. Healing suddenly seems a long way away again. I get scared that I am still going to be posting photos like this many years down the line.

Anyway. here is the grim reality of a flare at (almost) 18 months.

My arm was previously white. Now it is all red and blotchy again. it is incredibly itchy and I rake it with my fingernails at night.

 

My hand is awful. it is quite puffed up and there are clear demarcation lines between the good and bad skin. I don't think the picture shows how red the skin is, due to the lighting. My knuckles have baggy skin on them too. They look like old lady hands and I am not even 40 yet.

My belly is SO ITCHY!!!! I just want to rake it with a garden rake. The whole of the front of my body is like this.

My eye looks like I have been attacked. The eyelid is all flaky and the area between the lid and brow is oozy.

My forehead has lots of bloody gouges where I have scraped it with my nails. Luckily, I have a fringe and I flip it down to cover the mess.

Sorry if anyone was eating their dinner whilst reading this. I should have put a warning up first.

Anyway. Perspective time. Yes, I am flaring, but it is not as bad as previous flares. My face is still looking OK, which is good, as I can cover most of the other bad areas up.

I know that this flare will pass, so I am not overly worried. it hasn't stopped me in my tracks like previous flares and I have been able to go out this morning volunteering at the local school and none of the kids said anything. I got up in front of 100 people last night at my place of worship to give a talk and I didn't think about my skin at all.

TSW is losing its grip on me, but it is having a final fling at my expense!

I know I have come too far to go back to steroids now, so it is just a case of plodding on and hoping that I heal eventually.

Connecting With Other Red Skin Friends

In January, I had the lovely experience of meeting up with others going through TSW. It was a really emotional and special experience for me, because it was the first time I had met anyone going through this. We all had a shared connection and it was great to chat together and talk about our experiences with TSW.

The thing that hit me was how alike we all looked.Sitting round that table in a cafe in London, we must have looked strange to those passing by. Maybe they thought we had all eaten something spicy and gone red!

Anyway, fast forward a few months and I get the chance to meet another red skinner in the flesh. And not just any red-skinner, but my favourite TSW blogger "Miss Kitty Fantastico". And no, that is not her real name, though it would be cool if it was.

She emailed me saying that she happened to be in my neck of the woods and would I like to meet up in Ikea for a coffee?

Absolutely.

We had a great time chatting (although at one point a random kid hit me on the head with a balloon) and it was great to meet Kitty. I should have asked for an autograph, but instead, I got a photo.

I would encourage all the TSW'ers out there to try and connect with others locally who are going through this. We can encourage others, spread a bit of hope and make new friends.Thank you Kitty for taking the time out to meet up with me.

On the subject of spreading hope, here is a photo of my face today. The sun has been doing its work and my skin is feeling amazing!

I am getting whiter by the day! Most people have been out in the sun and look redder than me at the moment.

My skin feels more supple and the oils are coming back. There are less dry areas and less bleeding.

I am also getting the chance to bare my arms in the sun, so my whole body is responding well.

What a great week; meeting a TSW friend AND getting some sunshine. Bonus!