Monday, 25 November 2013

Remember… Good Skin

I just wanted to do one more post today to show how my skin is at the moment and how its been in the past so that I can look back at this and remember what my goal is!!!

Taken this morning, face is looking very calm
(don't tell anyone that 3 days ago I used a quarter of a cotton bud size 
of elecon on my top lip / cheeks as it looked like I had grown 
a red beard and had to go to the races the 
following day) <---- this is not a regular occurrence!!

1 - This is my most recent face pic (other than the one above it) taken only a couple weeks ago.

2 - This was almost 2 years ago

3/4 - Couple months ago

Yes, I like catching a few rays…. I know, I know, I know. I can just hear all my friends voices in my head RIGHT NOW haha but I just feel so much better with a natural tan. You can't see all my red spots quite as easily and the fake tans just dry my skin out something cronic and then go all flakey… and then very visibly patchy… plus vitamin D is good for you right! (DISCLAIMER - In no way am I endorsing tanning!! Normal skin people should definitely alway go for the fake stuff… your skin can handle it. This is just a personal preference for me at the moment)

Me and My Hair

So I've been doing a lot of thinking lately about how I can make myself more comfortable when I start the withdrawal next year. One thing that has started bothering me a bit lately is my hair… when I have a shower it irritates the skin on my back when I'm shampooing or conditioning (not from the shampoo or conditioner) it just generally feels icky, so recently I have brought one of those big tooth hair clips and I just clip it up while I'm waiting for the conditioner.

But the more I think about it, my hair is such a lot of work at the moment so most of the time I just have it tied up on the top of my head in a bun. So this is how I came up with the idea to chop it all off when I start the withdrawal, just to make my life so much easier and that much less icky.


I'm the one on the left with the curly brown hair 
that when straight is nearly down to my bum.

Potential hair lengths to make life a little easier.

Now, I've decided that I'm not just going to get it all cut off and swept away into the bin!! Oh no way!! Not after 3 long years of growing it all out. Na uh!

I have discovered this great cause called Beautiful Lengths [ ] where you can donate your hair to Pantene who get wigs made out of it to support women who are dealing with cancer. I would love to know that I can help someone else feel better about themselves because I know that at the end of the withdrawal, although it will be hell for who knows how long, I will get better again and be (relatively) normal.

Monday, 11 November 2013

My Skin at the moment

Since I found out about the whole Topical Steroid Addiction and Withdrawal I've been a lot more aware of how much of the topical roids that I'm using and how often.

Over the last few months I have been keeping a tally of how many times a month I've used TS. Generally they have all been on different parts of my body but mainly my neck, chest, arms, hands, wrists and shoulders, usually about 3, 4 or 5 days apart.

July - 4 times
August - 11 times
September - 7 times
October - 7 times

The main thing I have noticed since I have been keeping count is that I have slowly started developing mild withdrawal symptoms. Most probably because from what I can remember I used to just put on the roids whenever I felt a little itchy... now I wait until I'm at the point where my skins on the verge of breaking point and then I give it a fix.

The symptoms that I have noticed are....

1. My sleeping has become terrible! Wake up 2 - 6 times a night (yes I keep count), sometimes only getting 5/6 hours sleep a night (this is strange for me... I have always been a big sleeper)

2. My arms and wrists quite often swell up and become quite uncomfortable

3. At least once every 2 weeks my skin drys out and flakes off

4. My legs have become insanely itchy and I've never had a problem with my legs before

5. I scratched my ankle recently and got the strangest bright yellow ooze that I've never had before! (I guess this is the ooze that alot of TSWers talk about)

6. I've got a few swollen lymph nodes, a couple on each side by my hips, one in my neck and one on my shoulder

7. I occasionally get the weird metallic smell in my skin when I rub it to much

8. And in general I'm a hell of a lot more itchy everywhere than I was this time last year.

So I hate to admit it but it seems alot like I'm already in mild withdrawal faze. My body is just soooooo ready to get on with it and get this whole thing underway. But I still need to save. There is no way that I am going to do complete withdrawal without taking time off, its hard enough some days at the moment to get myself out of bed and out the door.

Anyway enough of my problems for now... next time I'm going to talk about something positive, like maybe what I'm looking forward to once I'm normal again or the supplements that I'm eating, or (semi) healthy diet that I'm trying to follow or maybe I'll post some pics of how my skin looks at the moment so that I've got something to compare to on the other side. I've had enough of feeling down about this for now...

My Bali tattoo to remind me to 'be brave'

Haha on a side note I'm looking forward to being able to grow my nails long again!!

Saturday, 2 November 2013

The Itch

Itching is such a constant thing in my life, has been for as long as I can remember. I always find myself really amazed when my skin is calm and I cannot feel a tickle or prickle or tingly sensation anywhere on my body. I will constantly identify my spots that I can feel.... for example at the moment my whole lower back feels like a cat with prickly fur is slightly rubbing against me and my hands are being tingly and annoying, also a little spot behind my left ear... Its just something I've learnt to live with and I must say it does get frustrating and gives me mild anxious feelings. This is probably the reason I have such high stress levels.

If I get tired I get stressed which means I get itchy...
If I get hungry I get stressed which means I get itchy...
If I'm just stressed in general I'm just generally itchy....

So this brings me to the reason for writing this post.

I've been thinking. If there was only a way to turn off the itch in your brain. Imagine that!! Being able to go through topical steroid withdrawal without itching.. which in turn would mean no swelling, no ooze, no cuts and scrapes, no crustiness, no skin flaking off every where from healing after crazy scratch-fests!! 

Don't get me wrong.. I imagine that you would still get the serious red skin from your blood vessels healing, insomnia from your adrenals healing and nerve pain from your nerves healing. But it would get rid of half of the TSW issues!

In searching this particular topic on the web I came across this one article. Don't get me wrong again...  I do not in any way endorse animal testing of any kind. I just found some of the following information was quite interesting.

Scientists have been able to identify the molecule that signals our brain to start scratching us raw—and removing it kills itchiness forever.

The molecular geneticists in question, Santosh Mishra and Mark Hoon of the National Institutes of Health, began by examining the neurotransmitter chemicals in our spinal column that pass along sensory information such as heat, pain, and yes, itchiness.

The true test came when the pair created genetically engineered mice that couldn't produce the Nppb transmitter. First they tested to see if the super-mice were still able to feel other sensations such as heat and pain, to which they all responded normally. So the removal didn't affect their response to other stimuli. Then, out came the itch-triggers (such as histamine). While the normal mice immediately started scratching themselves, the engineered mice remained calm and undoubtedly itch free. 

Until the scientists re-injected them with Nppb, that is, at which point all bets were off.

Next, they were able to identify a specific type of neuron in the mice's spines with receptors called natriuretic peptide receptor A (Npra), which seemed like a likely candidate to accept Nppb. And sure enough, once the Npra was removed from normal mice, they appeared totally impervious to any itching whatsoever. What's more, they were still able to feel other sensations, so lacking this neuron wouldn't affect their sense of pain or touch.

And even though these tests were performed on mice instead of humans, we share incredibly similar nervous systems with our more rodent-oriented friends. So at the very least, this gives us a far greater understanding of our own itch reflex. But it could also very likely lead to solutions for people who produce an excess of Nppb and help make stronger, more effective itch treatments—or perhaps even total cures.

It's not going to be totally smooth sailing, though. Nppb is significant not just for the sensory nuisance it causes but also for its ability to help regulate blood circulation and pressure. Which means shutting it off entirely might present a bit of a problem. In general, there's still a lot that we don't understand about itching and its evolutionary benefits, but our potential newfound ability to turn it on and off is certainly an incredible first step. 

Written by Ashley Feinberg on Gizmodo - (minus a few sections I didn't want to include)

Great news, right? Removing that gene or the pathway it travels from people could stop the very same itching that gives those going through TSW hell.

Unfortunately Nppb has a much broader role in the body, including the heart, kidneys and several other organs, so permanently removing it could lead to a variety of health problems... makes me wonder though if its possible to turn it off like a tap that just needs to be shut off for 6 months to a year and then turned back on once the body is healed...

Well, even though identifying the gene that causes itching doesn't cure itching, it does give a few clues as to how it could possibly be treated in the future.... Maybe like on one of those futuristic movies where everyone lives in space. I don't even know if I'm being sarcastic or serious.

I think if I ever found out that they were doing this on people, I think I would seriously consider putting my had up. Thats a scary though.

Oh well enough on that topic. Its dinner time!

Friday, 27 September 2013

Medical History

Ok so after sifting through all the sleeping pills, antibiotics, anti-bacterials, antihistamines, anti-inflammatorys and anti-depressants, I finally managed to get my list of previous topical steroid use together.

2000 (14)
This is when I remember first getting eczema to my left eyelid.
Started carrying moisturiser in my bag to keep it soft.

Oldest first...

2002 (16) October
                - Locoid Lipocream 0.1% (Hydrocortisone Butyrate) 100g (Moderate/Potent - Group 4)

2003 (17) August
                - Fucicort cream 0.1% (Betamethasone Valerate) 15g (Potent - Group 3)

                - Fucicort cream 0.1% (Betamethasone Valerate) 15g (Potent - Group 3)
                - Prednisone Tablets (4 day course)

2003 was 7th Form year at school. My whole face was covered in dry scaly skin.

2004 (18) March
                - Dermol Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

Worked part time this year after finishing school. 

2005 (19) March
                - Fucicort cream 0.1% (Betamethasone Valerate) 15g (Potent - Group 3)
                - Beta 0.1% Cream (Hydrocortisone Butyrate) 100g (Moderate/Potent - Group 4)
                - Prednisone Tablets (4 day course)
                - Hydrocortisone 5% cream (prescribed for face)

Moved away from home to study. 

2006 (20) December
                - Elidel (prescribed for face to replace Hydrocortisone 5% cream)
                - Locoid Lipocream 0.1% (Hydrocortisone Butyrate) 100g (Moderate/Potent - Group 4)
                - Prednisone Tablets (4 day course)
                - Hydrocortisone 5% cream (prescribed for face)

Moved to Auckland NZ (closer to home). Skin was terrible this year. 
Possibly stress related as hated job. Was also showing signs of withdrawals.
Skin flaking off every day from whole body.

2007 (21) April
                - Elidel (prescribed for face to replace Hydrocortisone 5% cream)

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

                - Elidel

Lived with a friend this year and went back to Uni to study Graphic Design.
Skin was as good as I can remember this year. Met my partner this year.

2008 (22) March
                - Elidel

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

                - Elidel

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)
                - Elidel

Moved back home after finishing study. Got full time job as Graphic Designer
Skin back to same old. Good in summer, not so good in winter.

2009 (23) April
                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)
                - Elidel

                - Dermol  Ointment 0.05% (Clobetasol Propionate) 30g (Very Potent - Group 1)

                - Dp Hc Lotion 1% (Mild - Group 7)

Skin was bloody terrible this winter. Definitely going through withdrawals.
Had insomnia, oozing to dry scaly skin, many days off work from being so itchy.
Was itching like crazy all through summer as well which is unusual for me.
Brought our first house in September

2010 (24) January
                - Dp Hc Lotion 1% (Mild - Group 7)

                - Elidel

Still suffering insomnia at beginning of year. Skin started improving though.
This year I also started using a soft comb to scratch. I found this would 
get rid of the itch without causing the itch scratch cycle

2011 (25) March
                - Elidel


                - Elocon Ointment 1% 45g (Potent - Group 3)

Went to Europe for month and a half in Aug/Sep. 
Stopped itching/scratching altogether for about 2 months after

2012 (26) March
                - Elidel

                - Elocon Ointment 1% 45g (Potent - Group 3)

Fiji trip in Jan, moved to Perth in April. Skin was amazing all year.
Started doing regular exercise and eating healthy.

2013 (27) January
                - Elidel
                - Mometasone Furoate Cream (Elocon) 45g (Moderate/Potent - Group 4)

Skin still good this year although seems to possibly have gone down-hill slightly...
Possibly because I've been paying it a lot more attention since I found out about TSA

Ok.... so after all that, it seems as though I have cut down on my steroid usage slightly over the last couple of years which is probably a good thing, it scares me quite a bit that I have been using Elidel on my face almost daily for the last 7 years. 

I do also vividly remember having withdrawal symptoms such as intense itching, oozing, insomnia, dry, red, scaling skin that would wash off daily in the shower... gross... so I know what I have instore for me next time round. At least this time I have knowledge and research on my side. Also the fact that I'm going to take 6 months off work will probably be a good thing as it seems from what I can remember that my skin was always in a bit better shape when I was working part time or studying.

After all that I'm tired... time for bed...

Saturday, 21 September 2013

My first post

This blog is going to mainly be for me to refer back to when its all over I suppose, to keep me occupied when I need something to occupy me, to record my progress, for random notes and positive thoughts and for anyone else out there who may find something useful on here.

I first realised that I might be addicted to topical steroids about 2 months or so ago. I have been using Elidel on my face every day for as long as I can remember and I decided that 'Hay! Surly I wont need to use this stuff anymore.. my skins going really well' I just started thinking that it was getting a bit pointless using it every day.

So I stopped... 7 days later my face was the size of a soccer ball and I had to use a small dose of Elecon cream twice to settle it down. I then thought to myself 'why the hell did that happen!!?' I hadn't done anything out of the ordinary. I then googled topical steroid addiction. I found various blogs on the topic and realised that yup, this was probably me.

I know I mentioned earlier that I figured this out 2 months ago... so some might say... why didnt you just stop then and get on with it. For those that know me, I don't handle my skin problems well. If i get itchy I turn into a crazy stressed out tearful person that nobody really wants to be around.

So even this discovery freaked me out to the max and I've had a couple of breakdowns just thinking about what I might have to face, it has also made me a lot more aware of how much steroids I'm applying and how often, which is probably a good thing. I'm the type of person who has to be super organised to make to best of every experience and I know from what I have read from others blogs who are in the middle of TSW that its not fun... its been described by many as the worst experience/challenge that they have ever experienced.  So I just want to prepare myself as best I can mentally, physically and financially. So right now I am saving up to take 6 months off work next year to go through the worst part of the withdrawal with as little pressure and stress on me as possible.

Its coming into the summer months in Perth soon and I know for a fact that I use far less steroids in the summer. So although I am prolonging the inevitable and most people would say theres no better time than the present, I just don't feel ready yet to live my life in the bath tub.

I just got my medical records in the post the other day because although it wont change anything now, I'm super interested to know exactly how much TS I have used and for how long.

I will go over my records with a fine tooth comb and report back, but for now.....