Thursday, 3 April 2014

Skin Updates: 28 Months of Topical Steroid Withdrawal! (photo)

Hi folks!

Here I am at the 28 month mark and I haven't posted anything on here in over a month. I'm enjoying my blog break way too much and psychologically it has been quite hard to return to the blog and "TSW World" now that I am feeling so much better.

I kept myself busy last month doing voluntary work in the community. As well as lifting my spirits considerably, it also had the added benefit of getting some sun on my skin. The sun is just starting to peek through here in the UK and the benefits to my skin have been enormous. It's not quite T-Shirt weather yet, but strangely enough, the little bit of diffused sunlight I have received on my face seems to have benefited by whole body. My inner arms, which had been a problem area, cleared up, even though I hadn't exposed the skin to the sun directly. Has anyone else had this happen, or am I just odd?

Anyway...time for a picture update!
You can see how much that little bit of sunshine has helped me. My skin is returning to its normal, pre-TSW colour and is no longer red. I do not need to use much moisturiser, as the skin is producing its own oils. I still use a little hemp cream around my mouth in the mornings, as this area can be a little flaky (I think because I use a steroid inhaler still). The jojoba oil is also suiting me well.

The period from October until February had been a stagnant phase and I believe that this was directly related to the winter weather. I truly believe that as Summer progresses, my skin will heal totally and I will not need to use any creams at all at this point. It remains to be seen whether the TSW rash will return in October again, but I try not to dwell on that too much.

I've noticed a few newsworthy updates in the TSW world since I've been on my blog break. The first is the ITSAN survey, which is very exciting as it aims to give patients a steroid usage score based on the usage and potency of creams used over their lifetime. The survey is worth doing, although I did find it quite hard and would recommend using a calculator! Once Itsan have 500 results, they can collate the scores into something meaningful and hopefully start to see patterns that relate to TSW healing times. The survey can be found on the forum homepage.

Another interesting news item is the development of Dr Fukaya's Clofibrate ointment, which has finally been made available to the general public after a test period. Check out Dr Fukaya's website for more details about how the ointment works. He also has a video on Youtube explaining the science behind it. If any blog readers have tried the ointment, please let me know how you got on with it.

I'm off again, as my computer is very laggy and driving me crazy! Hopefully I will get a new one soon.

Happy healing folks and don't stop believing!

Monday, 24 February 2014

I'm Putting the Blog on Hold For a While

Hi folks!

I haven't posted in about a week, because I've had the kids off school and we have been doing lots of fun stuff like visiting the zoo and going to the cinema, hence the blog got pushed into the background and forgotten.

I suppose it's a good thing; a sign of healing. I tend to blog a lot when my skin is bad, as I am stuck inside with not much else to do, so I figure I will channel my frustrations by turning them into something useful by blogging and chatting on the Itsan forum.

The point is, my skin is OK right now and probably will only continue to improve as the sun starts to show itself. This means I am likely to be spending more time outdoors and less time hunched over the computer.

Another BIG change that will be happening for me later in the year is that I plan to start homeschooling my autistic son in September, which again, will probably leave little time for blogging.

I just hit the 27 month mark and I am doing well, but I've been blogging consistently about my experiences during that time and I sort of feel that at this point, I've said about everything I have to say on the subject.

So for now, I will be out there living my life and giving the blog a rest. I hope you all understand. I have put many hours into creating a resource here and I hope people find it useful.

I have taken photos and shared my experiences trying out different methods of comfort, which may or may not work for others. Although I get messages asking for advice, I never give out advice about topical steroid withdrawal, as I believe that it is a very personal journey and individuals can have very different reactions to treatments. Besides, I am not a doctor and so I am not qualified to give medical advice anyway. I can just share what worked for me.

So...this is the end...for now. I will resume the blog at some future point, when I can hopefully share some fantastic photos of my healed skin. And of course, if there is any important TSW news, I will also aim to share it here.

The massive pageviews  never cease to amaze me. I often wonder who all of these people are and what their personal stories are. I hope that something I have written had helped each person who has found this blog.

In the meantime, feel free to browse my old posts or take a look at some of the excellent blogs on the right hand side of this page, who continue to carry the baton for TSW bloggers.

Goodbye for now, dear readers. x

Saturday, 15 February 2014

Congratulations Itsan!!!!

I just logged onto the forum this morning to discover that it than now has 1000 members!

The forum only started in September, so this is a big achievement and an indication of just how many people are out there suffering, or caring for someone with topical steroid addiction.

I can only see it snowballing from here, as the word spreads and more people find Itsan in their search for answers.

If you are reading this and have not yet joined the forum, please do, as we are a friendly bunch and are here to help and support you.

If you are already on the forum, but a "lurker" who hasn't yet posted or introduced yourself, I encourage you to dip a toe in the water and share your story with the rest of the forum. We won't bite, promise!

Big congratulations to itsan for reaching this milestone and a massive thumbs up to all the members who make it such a vibrant and supportive place to be. I love the exchange of ideas from members old and new and that even now that I am two years into TSW, I am still learning new things from these people. I also really appreciate the fact that we have a couple of medical doctors on board, who kindly give their time and expertise to help others.

Here's to the next 1000 and liberating more folks from the "steroid matrix."

Itsan.org

Thursday, 13 February 2014

Skin Update at Almost 27 Months (photo)

I'm posting this because I keep getting messages from people asking how my skin is doing and I realised that I haven't posted any photos in a while, as I've been busy writing about other things.

I suppose part of the reason is because my skin is in a bit of a stagnant phase due to the weather it isn't bad and it isn't good. it's just sort of hanging in that "in-between" place before the good weather comes.

It isn't really stopping me doing anything, but I'm not about to go and enter any beauty contests either.

Talking of the weather, we have had lots of wet, rainy weather here lately. You may have seen on the news that much of the UK is underwater and people have been flooded. My skin has mirrored the weather really. When it is grey and dull, my skin has been a bit dull. When the sun shines, it clears up a bit and I even get the odd compliment about how well I seem to be doing.

Anyway, here is the photo for today. My face isn't too bad, but there are a couple of scratches where I've caught it in the night with my busy fingernails.
 
Oh well...getting there slowly....

Roll on Summer!

Tuesday, 11 February 2014

Jojoba Oil: The Best Moisturiser for Sensitive Skin?

Hi folks! Today I want to talk about jojoba oil and share my personal experiences with the product.

Firstly and perhaps most importantly...disclaimer time....This is about MY experience with this product and this blog is not intended to give advice. People have different skin and different tolerances and what suits one person may irritate another.

In my 2 years of steroid withdrawal, I hadn't really heard much mention of jojoba oil. Maybe just the odd mention on the forum, but nothing that stood out in my memory. My actual "discovery" of this oil came when I was reading a skin forum (not itsan) about different emollients. One of the experts posting in the forum recommended jojoba oil as being different to other oils because it very closely resembles skin sebum and is therefore tolerated a lot better than other oils and creams.

This got me curious and I was keen to discover more.

My research led to a lot of discoveries about jojoba. For instance, did you know that jojoba is not an oil at all, but rather a wax? And yes, the wax esters are very similar indeed to human skin sebum.

In fact, people with acne often use jojoba as a moisturiser because it has a balancing effect, but the really clever part is that it does not dry the skin out either. it balances it. The effect is to recreate optimum skin conditions.

But there is more...so much more. Studies on rats showed that jojoba is an anti-inflammatory and also, most importantly for TSW people, it LOWERS NITRIC OXIDE LEVELS!!!! This is very important, as the reason we flare is because of excess Nitric oxide in the blood. Surely a moisturiser that lowers nitric oxide has to be as close as it gets to perfect, right? It also has been shown to reduce edema, another big problems during steroid withdrawal.

In fact, in all my research on jojoba, I didn't find anything negative about it online. Nothing but praise. I then revisited the itsan forum and typed "jojoba" into the search box, only to find that many clever forumites have been using this fantastic oil and extolling its virtues for ages, I just hadn't noticed before.

So anyway, I bought a bottle to see if the hype was true. I bought the smallest bottle because I'm cautious like that and despite my enthusiasm, experience has told me to be reserved about such things.

The oil itself, or should I say WAX, is rather thick and a little goes a long way. One drop could spread over half my face. When you rub it in, it sinks right into the skin and there is no grease left on the skin because it does not contain triglycerides. Another good thing about it is that it is antimicrobial and antifungal, so it does not go rancid and keeps for a very long time on the shelf. It is non-toxic, non comedogenic and non-allergenic (of course, it may cause a reaction to particularly hypersensitive individuals). Jojoba oil also actually kills mildew when it comes into contact with it. It also contains beneficial vitamins and minerals like vitamin E.

I found the oil to be really good and very useful in day to day life. For example, if I have a dry patch on my face, a quick dab of jojoba and I look normal again. I also found that it worked wonders on oozy areas (could this be due to the fact it reduces nitric oxide?) and flaky areas. You know those papery scabs that won't heal? Well, I found jojoba to be pretty much the only thing that works on them quickly.

In short, if you are going to use a moisturiser during TSW (not everyone does, and I respect that), jojoba may be a good choice to consider as it is natural, contains no nasty chemicals and is anti-inflammatory. I love my little bottle and I know it will last for ages, so it has been a bargain.

Please, if you have tried jojoba and would like to share your experiences, either good or bad, I would love to hear them.

Tuesday, 4 February 2014

Using Apple Cider Vinegar to Treat Eczema and Steroid Withdrawal Symptoms

Apple Cider Vinegar (ACV) has been used as a general cure-all for centuries. I remember trying it out a while ago for my eczema symptoms because I had read about how useful it was. Unfortunately, the version that I tried was the clear, pasteurised type, which has been heat treated to kill all the live stuff that gives ACV it's power, so it didn't work all that well and I resigned it to the pile of "treatments" that didn't help....UNTIL RECENTLY......

So what changed?

Well, a member of the Itsan forum, Ronda, created a thread all about how she uses ACV to treat her skin. She says:

"
One of the things that has been a life-safer for me during this TSW process is Apple Cider Vinegar (ACV).  I use Braggs because it is organic, raw, unfiltered, and unpasteurized.  ACV has been used for years, as far back as 400BC, Hippocrates used it as a healing aid.  It is anti-bacterial, anti-viral, and anti-fungal.  That being said, how have I used it and how has it helped me?

1.  I bathe in it 

When my skin was really raw and I had sores, I would soak in a tub with 1 cup of ACV and 1 cup of epsom salt.  I have been TSW since July of 2013, the first four and a half months were pretty much full-body flare.  Yet, I never developed an infection and I credit that to the anti-bacterial properties of the ACV.  It is also acts to balance the ph of the skin.  I found it to actually act as a moisturizer.

Now that my skin is in the dry stage, no longer rashy, I still bathe in it, but I have decreased the amount to 1/2 cup per bath.

2.  I drink it

Even though vinegar is acidic, when we drink it, it has an alkaline effect in our bodies. It also reacts to some toxins in our bodies, converting them into less toxic substances. Our bodies need a slightly alkaline pH balance to be healthy.

3.  I use it to alleviate itch

I mix 1/2 ACV with 1/2 distilled water in an empty bottle.  I soak a cotton ball with it and rub it on my skin.  When my skin was raw and rashy, I did this almost hourly.  It helped alleviate the itch and it "calmed" the skin down so it didn't feel so irritated.

4. I use it to heal sores

My hands were full of open sores and small cuts.  I continually put coconut oil on them covered them with cotton gloves and then vinyl gloves, but they weren't healing.  So, I decided to stop using the oil and use the ACV mixture on them and put them in the gloves.  Within two days, all of the sores were healed.  (My skin is still rough and thick, but the sores were all gone.)

If you want to know more about ACV, there are a lot of good sights on-line that are more in-depth about it's properties.  It has been such a blessing for me, that I wanted to share this with others.  I am not in any way saying it is a "cure" for the skin, but I am saying that it has been extremely helpful to me during my TSW.  Just my 2 cents worth!   :smiley:"


Anyway, I was so impressed with Ronda's post that I went and ordered a bottle straight away. Ronda explained that it was important to buy the unpasteurised type, which contains something called "mother of vinegar". The "mother" is alive and contains all of the goodness. it makes the vinegar cloudy, which is why many companies remove it by heat treatment.

Here in the UK it is really hard to get hold of the cloudy ACV, but in the end I managed to get a bottle from Amazon relatively cheaply. I could not find it in any supermarkets or health food stores.

So far I have tried using it two ways: bathing in it and drinking it. I add a spoonful to a cup and dilute it with water and drink a couple of times a day. One benefit I noticed straight away was that it stopped me getting heartburn and acid reflux. ACV is said to alkalise the body, even though it is an acid and I would believe that this is true because I have stopped taking antacids at bedtime since drinking the ACV.

The other method I use is bathing. I take a half a cup of Epsom salt and add it to a full bath with an equal amount of ACV. It didn't sting me and I didn't feel any need to moisturise my skin after the bath, as my skin felt calm and soothed.

Many forum members have used diluted ACV directly on the skin using a spray bottle or cotton wool pad. It calms the itch. I imagine this would be especially good if you chilled the solution in the fridge beforehand.  It can also be used as a skin wash and hair rinse.

It is said that ACV can help weight loss, but I suppose I will have to wait to see if that proves to be true!

ACV is a really easy thing to add to your skincare regime and is cheap to buy so costs virtually nothing to try. If you don't like it on your skin, you can still use it on your salad...


Friday, 31 January 2014

Itsan in the Media

Rewind a couple of months and you will find me sitting in an armchair in the corridor of the New Art Gallery in Walsall chatting affably to a young student called Zoe Woodbridge who has come all the way from Bournemouth University to talk to me about topical steroid withdrawal.

As part of her course, she has been creating a multimedia project called "The Eczema Itch", which is all about various methods of treating eczema. Zoe, an eczema sufferer herself, has presented her final work beautifully, incorporating audio clips, personal stories, images and interviews in an easy-access format.

I am rather honoured, because her "Radio" feature contains some clips from our interview, as well as a couple of excerpts from the Scratchy Monster book. I also allowed her to use some of my gory and grisly blog photos to show the world how horrible steroid withdrawal can be!

I am not the only red-skinner who took part. One of our forum members, who is a medical doctor, also gave his unique perspective on the subject during the radio interview. As someone in the medical profession who is himself suffering from the effects of topical steroid overuse, he is in a unique position to help encourage doctors and dermatologists to take this condition seriously.

Another participant in the project was the brilliant Jenny from the I have Eczema Blog. Jenny shared her experiences and let Zoe use some of her blog photos for the project.

Please go and visit the final product, which is very professional-looking indeed. As the site is interactive, please leave a comment if you have been affected by steroid withdrawal, or take part in Zoe's survey on the site.

This has been a great opportunity to get the word out about steroid withdrawal.