Flashback: Wavy lines, Soft Focus....

So today I'm going to do a ranty post about some of the times in my life when my skin has really let me down. These, of course, were times when I was suffering from steroid addiction, but thought that it was eczema.

The Eczema Herpeticum Hell

Reading Jenny Stradling's recent blogpost on her hospital stay with EH reminded me of my brush with the disease. It was at the time that I believe, I first got addicted to steroid creams. I was using them on my face for the first time and was surprised to find an ulcer-like blister on my chin. It hurt like hell, so I went to the doctor, who told me to put hydrocortisone on it. Even I didn't think this was a good idea, but I did as he said. Within days, I had blisters all over my face. They were spreading like mad and were in my eyes. I went back to the doctor, who said it was impetigo and gave me some antibacterial cream,. It wasn't impetigo and I only found this out a few days later, when, completely crusted up and barely able to move my eyes and mouth, I was diagnosed with EH and given a ridiculously tiny tube of acyclovir cream and some tablets.

It was a horrible time and I was totally incapacitated. I can't believe that two doctors got it so wrong before I was told what I had. Since then, I get small outbreaks of EH when I am run down, but nothing like that hellish initial outbreak.

Honeymoon Hell

Not to say that my honeymoon was hell, of course. It had its good points too. But I was terribly ill with my skin.

We went to Sorrento in Italy, which was my dream destination. My skin was giving me trouble and it went from bad to worse. The climate didn't seem to suit me. My skin was itchy and oozy. There was dry skin everywhere. As the holiday went on, I got worse. A trip to Rome had to be cancelled. I was devastated. I had to have my meals in my hotel room. We racked up a massive bill for room service!

A doctor was called. She prescribed steroid cream and a course of oral steroids, which was the one and only time in my life that I have ever taken them. My legs swelled up as a result of the orals and I kept vomiting, which left me severely dehydrated. We tried a daytrip to Capri, but I kept passing out and needed rehydration therapy. Luckily, there was a doctor on the coach who was very kind to us.

It's funny, but I still have fond memories of the holiday, despite how ill I was. I would love to go back again and do it properly now my skin is better. My hubby still owes me a trip to Rome!

Pregnancy Woes

When I was pregnant with my first baby, my skin went mad because I stopped using the steroid cream. I was unwittingly going through TSW without knowing it.

I remember sitting in the hospital crying my eyes out. I was making such a scene that they took me into another room, daubed me with steroid ointment and wet wrapped me. I was so grateful...

Throughout the pregnancy I must have used a tube of Eumovate a week.

A Happy Story To Finish

Those days are behind me! No more skin woes. Just good skin days.

TSW has provided me with some of the darkest times of my life, but it doesn't pay to look back with regret. Keep looking forward with hope and make new memories to replace the sad ones.

Hehe! My skin is getting whiter by the day!

My Fantasic Before and After Photos!!!

Hi everyone!

I thought I would post a few improvement pics to cheer everyone up and give them some hope. I want everyone to know that things do improve if you hang in there.

I am not completely healed yet, but things are improving at a phenomenal rate. I think I will be fully healed within the next few months.

My main issues are with skin colour rather than texture. my skin is lovely and smooth all over. Silky soft. I love to run my hands over it now that it is no longer dry, rough, oozy or bumpy. I still have some blotchy pink areas though, even though the skin feels smooth in these areas. They are healing well though. It won't be long now.

ANYWAYS...on to the photos! "Befores" at the top and "afters" underneath....

 

 

 

 

 

 

 

Hope you enjoyed looking at my photos. It was really hard to look back at the old ones and remember how horrible my skin was.

Like I said, my skin is not quite perfect yet, but I really don't care. I am so happy and I know I will get better and better.

TSW is horrible, but you CAN get through it and there can be a happy ending if you stick with it.

Party Time!

I went to my friend's Hawaiian-themed party on Saturday.

I wore a grass skirt and a short sleeved top, yes, I did show my bare arms and legs!

I even wore a bit of makeup!

I also drank some alcohol!

Proof that TSW doesn't ruin your life forever. There is life after red skin syndrome.

Blogs Blogs Blogs

It truly is my belief that you cannot have enough blogs about steroid addiction.

Let's face it, there are absolutely no books on the subject at present (apart from the very excellent Scratchy Monster by me!) and we need to get the information out there. The good news is that if you were to google "eczema blog", the top results on google are all TSW blogs!

The more of us that blog, the more chance that someone will find the infomation about steroid addiction and make an informed decision whether to stop using steroid or not. If we put photos on our blogs, those who come after us will have a record to look at and compare.

There are now over 40 blogs about TSW and I am having trouble keeping up! I try to list them on here, but I am sure I have missed some out. Please let me know if i have missed any so I can put it right.

Anyway, THE MOST IMPORTANT BLOG YOU WILL EVER READ ABOUT TSW IS......

Not this one. Not even Kitty's one, which is my absolute favourite blog. Sorry Kitty.

The most important blog is Dr Fukayas blog.

The guy is a DOCTOR!!! We are mere mortals!

What is more, Dr Fukaya worked in a hospital where he treated many patients with TSW. he lists their case histories on his blog, documents the healing process and talks about the science behind TSW, which is too huge for my tiny brain to grasp, but involves lots of complex diagrams!

The blog is here

http://mototsugufukaya.blogspot.co.uk/

READ IT NOW!!!

WHY ARE YOU STILL HERE?

READ IT I SAY!!!!

Still Healing Well (photo)

Just a quick post to say that my skin has been doing really well during the sunny weather. unfortunately it is raining again today. Ugh.

My arms are virtually clear, but my inner arms are still quite itchy, especially at night. My neck and face are the best they have been since withdrawals started. My legs are clear and my torso is almost clear.

When I have more time I will post more photos.

NEARLY THERE!!!!!

I hope this gives everyone some confidence that they will get better in the end.

I'm off to a Hawaiian themed party at the weekend-something! could not have dreamed of doing when my skin was bad.

Surely I will be "done" in a few months? Here's hoping.....

Stories of Those Healed From Topical Steroid Addiction: Part 2

As promised, here are some more stories from the RSW healing hall of fame.

Tracy's Story

Tracy is another long-standing Itsan forum member. He was a couple of months ahead of me with his withdrawals, so I always found it useful to read his posts and try and gauge how my skin was likely to be in the coming months.

Although he didn't write a blog, he would regularly upload photos to the forum and also uploaded quite a few videos to youtube. His rash was particularly bad on the torso and he tried a lot of different therapies, such as diet and different products to try and speed up healing. he came to the conclusion that these didn't really help ad that the only real cure for TSW was time and sunshine. he is now healed at 20 months off the steroids and here is his latest video.

It is so good to see that he is healed and it gives me a lot of hope because I am only a few months behind him.

Rochelle's Story

Rochelle is another TSW veteran. She had already started her withdrawals when I found Itsan and she was having a really hard time with it.

Rochelle healed at 16 months off the steroid creams.

I will post more stories soon.

Stories of Those Healed From Topical Steroid Addiction Part 1

I am, writing this post in response to a comment on the Itsan Forum that I read yesterday:

"I am getting kinda scared because I find it so hard to read through the research reports on itsan &I feel like I have only seen one healed blog and I am getting worried healing wont happen. There are people with blogs that are almost completely healed, but when I started this whole thing I found a blog of someone in this situation..now 7 months later she is bad again, weeping and all that and it is making me scared that healing wont happen? I know this isn't true on a logical level but I am still get really scared feelings.

I feel like there are so many of us with blogs of our struggles, but like none of us better. Am I missing something maybe? People still seem to be quite bad a couple of years down the track and it is scary."

 

Her comments resonated with me, because I felt that way myself many times during withdrawals. When I first stopped steroids, I had read a lot about healing, but didn't really know of anyone who had healed.

 

Luckily, things are changing and there are many people blogging about their steroid withdrawal journey. As a result, the healing stories are trickling in, which is very encouraging to those just starting out on this long road.

 

I should point out that steroid withdrawal takes between 6 months and several years, depending on duration and potency of the steroid used. This is why a lot of stories, my own included, have many ups and downs on the road to healing.

 

Anyway, I thought I would provide links to the blogs of those healed, in order to give others a little bit of encouragement. There are quite a lot of healing stories, so I am going to spread them out over a couple of days, as I don't want to write a ridiculously long post!

 

Here goes....

 

Kristina's Story:

 

When I started my steroid-free journey, there was a lady called Kristina on the forum, who was having a tough time watching her young daughter go through TSW.

 

Kristina and her husband had struggled, taking their daughter to every hospital and specialist imaginable in search of a cure for their daughter's spreading "eczema". The doctors only prescribed steroid creams and the parents spent lots of money on alternative treatments such as water softeners, NAET, acupuncture and special clothing. Nothing worked.

 

In August 2011, when their daughter was just 3 years old, the parents decided to stop using steroid cream on their child after finding Kelly Palace's Addicted Skin website (the precursor to Itsan).

 

Withdrawal was horrific, and left parents and child drained and exhausted. Kristina had bouts of depression and anger.

 

Slowly, however, things started to change. Children tend to heal quicker than adults, as they have not had so many years of steroid use and their skin seems to regenerate better. Finally, after nine months off steroids, their daughter had beautiful, clear skin.

 

The child is now five years old and has no recurrence of the rashes that previously plagued her. her skin is normal, healthy and clear. She can do whatever she likes, without any restrictions due to her skin.

 

Kristinas blog, along with pictures can be found at http://scratchymonster.blogspot.co.uk/

There are some great before and after photos here.

 

Jake's Story

 

Jake and his partner Libby live in Australia. They may live on the other side of the world from me, but we share a special bond because Jake and I stopped steroids at the same time. This is why I call him my "skin twin"!

 

I loved reading their blog, because they took a unique approach to TSW. They tackled the TSW using a multi-layered approach; though diet, alternative therapies and nutrition. I was really interested to see how their alternative methods would affect healing time.

 

The pictures that Libby posted of Jake's withdrawal were graphic. I remember one photo showed a pile of dead skin that Jake had shed that day! His skin was red, raw and flaky. It was in very poor condition in the early days.

 

Withdrawal took its toll on Jake emotionally. He struggled with a condition similar to post traumatic stress disorder due to everything he had been through emotionally and physically.

 

It took 18 months for Jake to heal completely, with lots of ups and downs. You can see his healing photos here. His skin is now completely clear and smooth and he can live his life again.

 

OK...that's all I have time for today. I will be adding more stories over the coming days and if you have a healing story you would like me to share, please leave a comment on the blog and I will get back to you. Thanks.

Another Progress Photo

Just a brief post to show a photo of my face today.

I am SOOOOOOO close to healing now!

I can actually see white skin again. I am, by nature, very pale-skinned.

The sun is finally shining and has been for the last few days. I get outside whenever possible and get the rays on my skin. I like sitting outside when reading.

I actually started wearing T shirts and knee-length skirts out, baring my arms and legs. It feels weird. I have been covered up for so long. Not long ago, I was all cocooned up when I went outside, pulling my hood over my head to hide my face as much as possible.

The steroids are losing their grip on me. I am almost free.

Another Red Skin Friend Healed!

I woke up this morning to the most amazing news. A dear TSW friend has healed from Red Skin Syndrome.

When I first learned about topical steroid addiction back in 2011, there were very few websites and blogs on the subject. Itsan did not exist at all. We had a little forum and Kelly had set up a webpage called addictedskin.com. The few of us that had found her site and read Dr Rapaports research chatted and posted on the small forum and read what little information was available on the subject.

One of the bloggers was called Juliana. She wrote her blog in a timeline format, an idea that I shamelessly copied for my own blog! I just thought it was such a great way of recording progress.

Juliana also posted photos. Lots of photos. Many of these photos were shocking. I remember seeing her pretty young face covered in dry, peeling skin. Her limbs were covered in bleeding, wet wounds. I felt so sad for her.

Her blog posts were very sad to read at times. Progress was slow for her. I could feel her despair coming through in what she wrote. Her pain was raw. I desperately hoped she would heal, but she never seemed to get a break.

Then, in recent months, she started to report improvements. It was clear things were changing for her skin after two long years of withdrawal.

Today I saw new photos. Her skin is now PERFECT! She finally had the courage to post a photo of herself with completely healed skin and I got to see her beautiful face for the first time.

She has given me so much hope. It has taken her two years, but she is now completely better and joins the swelling band of completely healed individuals. These blogs will serve as evidence to prove that the steroid-pushers are WRONG. Steroids are addictive, but steroid addiction is curable.

Please visit her blog and see for yourself. Her latest post is here.

Once you have seen her amazing photos, go to the right hand side of the page and click on the photos tab to see how far she has come.

Juliana, I am so happy for you. It gives me confidence that I will heal too. Some days I get so down and think I will never get better, but you and the others that have healed give me so much hope.

Thank you Juliana for inspiring me and so many other bloggers to record our steroid journey. I wish you every success in life. X