Monday, 30 June 2014

Day 86 and definite improvements

Next week, this Sunday to be exact is my 3 month anniversary! I can't believe how quick its gone and how quickly things are still changing from day to day.

Heres my progress pic...

(you need to zoom in to see the finer details)

On the left is me, Christmas 2013 (I wish it was me today but this is going to be me again by Christmas 2015). I look at this picture and laugh a little because I used to HATE those really fine smile wrinkles... I used to be a big smiler... smile all the time no matter what. I'd smile as big as I could in every picture just because I thought that if I didn't I looked weird and a little dorky haha. Oh how I would give anything to have all those fine smile wrinkles back again!!

Its ok though because the picture in the middle is me, today. I still have slightly swollen puffy cheeks and dry skin in the mornings before my clay mask, but at the moment if I run my finger over my cheek it actually feels smooth... like real smooth! Its such a weird crazy feeling after all these years to finally be free of TS and know that I can still achieve smooth skin... even if it might be dry, red and crackly again tomorrow, I know that I can still do it :)

On the right is me, 6 days after quitting TS, Elidel and moisturiser completely. Bit of a mess but it makes me so happy to see how far I've come!!!

Bring on the next 3 months I say!

Sunday, 29 June 2014


Didn't take an antihistamine tonight… Or last night I should say. So I've been wide awake since 2am.. Fell asleep at about midnight so I've managed to get 2hrs sleep in. That's something haha

My lovely partner got me this wonderful little clock and as you can see its now 5.13am and I thought I'd write a post seeing as sleep is not my friend tonight.

I'm quite lucky with my insomnia I suppose because I don't really get to itchy at night… Unless I get frustrated with being awake.. Then I get itchy!! I'll usually have a couple of maintenance scratches throughout the night.. But when I have nights like this (usually only when I don't take an antihistamine) I usually just try go with the flow. And the flow is wide awake!

I vividly remember last time I was going through TSW and I would be wide awake every night between midnight at 5am (this was before I found out about the lovely drowsy antihistamines).. I had this tiny little spotlight that strapped onto my finger and lay in bed and I'd read every book I could get my hands on and I could just NOT understand why I had insomnia when my whole life I'd always been a big sleeper. I'm glad I know now whats causing this I just wish I knew how long it's going to take before I can get a solid (unmedicated) nights sleep again.

After reading up on a lot of other warriors experiences with this issue it seems that the insomnia can improve anywhere between 4 - 9 months for the solid sleep habits to come back. EEEk. Oh well at least for now I've got something nice to look at on my wide awake nights :)

Tuesday, 24 June 2014

11 WEEKS / 80 days - things that have helped me so far

Pre-warning... todays going to be a long one!!

I really wanted to write this post yesterday, but unfortunately by about 10am I started to nose dive straight into and itchy exhausting flare that lasted most of the rest of the day. So I just ended up spending yesterday taking antihistamines, ibuprofen and sleeping. I had an episode like this a couple weeks back that I wrote about also so I think I've come to learn that these are my 'flares'. It only lasted yesterday thank goodness and today I'm feeling fine again with my energy levels back up.

Skin review for last week... One word... Improving.
Heres a list of other things that are also improving...

  • Less flaking (most noticeably on my arms and face)
  • Less bone deep itching (apart from yesterday)
  • Sleeping easier / less insomnia
  • Less metallic smell from scratching
  • Less hair falling out when I brush it
  • Better temperature regulation.. I'm not freezing all the time and can sometimes be comfortable without my goose down jacket
  • Swelling in knees gone down
  • Haven't had a daytime sweat attack in about a week
  • Sometimes it doesn't feel so great to scratch anymore. Most of the time it still does, but sometimes I'll be scratching and think 'This doesn't actually feel that great... I should probably stop'
  • Improvement in energy levels.... just slightly

Things that still need more time...

  • My bald spots
  • Arms (hands/wrists in particular) still very leathery and elephanty and swollen
  • Still waking up sweaty a couple times most nights
  • Swelling in cheeks 

So there we have it :) I think I can officially say now that I'm coming into a calm period... How long for... Your guess is as good as mine! Ideally it will be continuous improvement from here on out but thats just being hopeful I suppose.

Next I wanted to write about things that I'm using/doing to help myself through this whole ordeal.

First item in my TSW kit is Apple Cider Vinegar... I drink 2 tsp of this with honey every morning.. have done for the last 2/ 3 years and have not yet once had a bad cold or flu. Had minor sore throats etc when family members or housemates have been sick but its never turned into anything full blown. 

With Apple Cider Vinegar.. to get any real benefits from it you need  to use the organic stuff with the mother (floaties down the bottom). I haven't used it externally as some people do, but is great at disinfecting wounds and I sometimes use it for cleaning.

Second thing that I haven't actually mentioned before as I've been a big advocate of no moisturisers, is this Rawleighs ointment that my gran used to use. It might just be a placebo effect as I've always used this for small cuts and grazes and I always feel like it heals up so much quicker than when I don't use it. The other reason I use this in small quantities is because when you apply it... either to a cut or just a small itchy spot... it has a serious cooling effect (one of the active ingredients is menthol) so this replaces any itch with a different sensation for a couple of minutes. 

I sometimes use it around my lips to prevent cracking.. I also use it on stubborn little scabby spots that refuse to heal. I've also been applying it to my cheeks every now and then after I do my clay mask also. I just really like the feeling of the coolness :)

I'm not going to recommend anyone else to try this as I firmly stand by the no moisturiser theory. But if you are interested in finding out more heres their website... Its not much to look at but for me its an old wives tale recipe thats been passed down in my family and I trust it.

And then theres my comb!!!! This one is not my original... my original comb I had for about 5/6 years and oh it felt like heaven every time I scratched. I actually lost that comb 2 weeks before I started TSW and 1 day before my partner and I went to Thailand on holiday. Haha well I can tell you that loosing that comb was one of the most stressful experiences I've had in a LONG time. I still can't believe that I lost it. So typical.

Anyway this one here is not quite as good... as you can see a couple of the teeth have already broken off due to some over zealous scratch fests over the last nearly 3 months. I brought about 50 combs in the 2 weeks prior to the start of my TSW and this was the one that felt the closest to my old one. 

Its so important to get a really soft plastic one... the hard plastic ones will just leave massive cuts all up and down your skin. Especially in the bony areas like your knees or elbows. The soft bristle combs will bend around those bony bits and not turn them into mince meat... this one I still have to be a little careful with but with my old one I used to go for gold.

The pink box, Polaramine, I brought over the counter when I was still in Australia. I used this almost nightly leading up to my withdrawal as the insomnia kicked in a couple months before I quit TS completely.

The blue box, Promethazine, is a prescription antihistamine. I had to up the strength of my antihistamine once I'd stopped TS and gone into withdrawal. I still only take half a pill every night but eventually I'm going to try and wean myself back onto the pink box and then off completely. But at the moment the Promethazine is a life saver. I take it 2 nights in a row and then have a break of 1 night, just so that I don't get to used to them.

And then my big box of Ibuprofen :) good stuff for reducing the itchies!!

These are the only medication that I take at the moment. I was on the pill prior to my withdrawal but I stopped taking that also and I'm glad I did. I read somewhere that being on the pill long-term may reduce folic acid levels as well as the body's ability to use folic acid. I have the Heterozygous MTHFR C667T gene mutation, which means that my body has trouble using, or maintaining folate anyway. Plus I've been on the pill since I was about 14 because of bad cramps, which funnily enough since I've started taking folate have stopped completely. 

Actually..... thats quite an important one, the whole pill and folate thing.... I'll do a separate blog post on that I think...

Short ass nails, nail clippers and millions of those emery boards help keep my stubbs smooth and scratch free haha. I really do look forward to the time when I am comfortable enough to grow them back!!!! My gran used to say I had such elegant hands.... not any more!!!!! haha. Fingers crossed for one day though.

Bentonite Clay... this one is a fairly new one in my TSW kit. But I believe that it has definitely helped in reducing the flaking and inflammation in my face. I know that after using Elidel daily on my face for 7 years that my face is going to need a bit of extra help and I think that this stuff is great. Its cheap, easy, feels a little weird. But I saw results pretty darn quickly and I'm definitely going to continue to use it.

Piles and piles of warm comfy clothes. When I was still in Perth, still employed and in my TSW planning stage I went to the big outlet shopping centre and just stocked up on jerseys and track pants, long sleeve tops and heaps of singlets. I knew that I would be coming back to New Zealand and suffering through a long cold NZ winter, so this is where my pre-planning really paid off. I was able to buy heaps of winter stock at sale prices (as it was still summer then) and send it home to be put to use later (now) and I'm so happy I did that. My partner used to say 'why don't you just buy all that stuff when we go back to NZ?' Because a pair of $10 track pants in an Aussie summer would have costed me $40 in a NZ winter!! 

My beloved Goose Down jacket. This was by far my most expensive comfort item. I still brought this in summer on sale and it still costed me nearly $200. I'm glad I did though. I wear it pretty much every day. Its been my warm comfort on cold days and my security blanket when I'm itchy (its kinda hard to scratch when I've got this thing on).

Ear plugs!! These are for both me and my partner... mainly for him actually. Wearing these means that he's not woken multiple times a night when I have crazy scratch fests and he can actually get a good night sleep and wake up well rested and ready for work the next morning... lucky for some huh. I do actually wear them to though.. they kind of help block out any little noises and I can sometimes meditate myself to sleep when I've got them in. Haha to be honest I'm a pretty light sleeper at the best of times and although he won't admit it my partner does actually snore sometimes :)


These are a lot to write about but info on them can be found here...

and here...

Probiotics and Kombucha probiotic tea... I seriously believe that these, among other things are helping me heal from the inside out. 

Sunshine!!! Ok so we don't actually see a lot of this here in NZ at the moment so instead I'm getting my vitamin D dosage from a full spectrum UV sunbed. I just love the sun and it has always done great things for my skin. I was going to wait until I was a bit further along in my withdrawal to begin any sun exposure. But my skin never ended up getting as bad as I expected it to so I thought what the hey... I'll give it a go. And it has definitely paid off for me :)

Walking, walking, more walking, sometimes gym, but mostly gentle exercise has been great for my mood and energy levels. 

Wheu nearly there... what a marathon!!!

The last couple of things that I want to mention that I've found is helping me is drinking water (heaps of it), no alcohol, gluten free, mostly fruit and veges and being a CLEAN, GREEN, HEALTHY MACHINE!!


Tuesday, 17 June 2014

10 WEEKS & Bentonite Clay part 2 & UVB Tanning

Skin Update...

I'm a little late in writing last weeks skin update. Things have been up and a little down over the last week... mostly up though which I'm really excited about.

My face finally seems to be clearing up which makes me happy :) but the dry/flakeyness seems to be heading south now. My neck/chest area are very dry... luckily not to the point of cracking but the tightness does stress me out slightly. My arms go through cycles of being covered in snow flakes to being semi smooth. The ashy elephant looking skin will be haunting me for a long time though I think which is ok by me as long as it doesn't get any worse. I have also developed some rashy broken areas behind my knees, nothing to major but I thought I had better mention it as my legs have been mostly fine up until now. Finally, due to the increase in sweat attacks I have been having lately, the skin around my stomach/back has now got a slight crocodile texture... probably from the sweat and itching combination.

I have also had this one spot on the back of my neck that has just oozed non stop over the last 2 days!!! Its finally scabbed over this morning but literally the last 2 days, every time I touched the spot I'd look at my finger and it would be glistening with ooze! DISGUSTING! I tried some of the Bentonite Clay on it yesterday morning and it still persisted in oozing all yesterday and last night. Thats the longest time that I've had a spot ooze for. Crazy. I just can not understand how this ooze took so long to dry out.

Anyway I guess that spot is starting to heal which is good, for now anyway.

I also had another big outing with my partner over the weekend. Went for a bit of a road trip as he had a job interview in Auckland (2.5 hrs away), we left early, I hung around at the beach for a couple of hours while he was busy, we went and had lunch, went to see an open home and I test drove a car (one of those little VW Golfs... really want one but unemployment has its downfalls) and then we ended up getting home about 6pm. I was in bed by 8 and out like a light (no antihistamine either). This whole no stamina/energy thing still intrigues me.

Bentonite Clay part 2...

So I started doing the clay masks just over a week ago now, there were a couple days last week that I missed so all up I've probably done the masks about 7 times. I'm not to sure if it's because my face was coming into a break or if the clay masks are working their magic... either way I'm happy !

Heres a photo of me yesterday...

I still wake up a little flakey and really puffy around my eyes but the flakes wash off with the clay and the puffiness always goes down by the end of the day. So really, can't complain.

UVB Tanning...

Because I'm that impatient, I've also found a good place in town has a full spectrum sunbed which I've tried out a couple of times. Its not to expensive and I've started out on 4 minutes which I will gradually build up. Haven't really got anything report on that just now other than it feels nice to get a bit of vitamin D again haha.

Monday, 9 June 2014

9 WEEKS & Bentonite Clay

So first off, skin review for last week.

My face has been mostly flakey and a little inflamed with a nice smooth skin day on Saturday (it sounds like a weather report).

My arms last week were growing slowly more itchy over the week until Sunday I had a wee bit of a break down (even suggested using a bit of TS. My partner firmly put that in the NO box). My arms were just throbbing, and stinging and prickly and flakey and oozy all at the same time. I have been trying soooo hard to do as little damage as I can and to be honest they probably didn't look to bad but my god they felt terrible, I really wouldn't have minded if someone had come along and amputated them. My arms have not felt that bad for the whole last 2 months so I'm not 100% sure what brought the crazy horrible feeling on…. but I may have a slight idea. I upped my NAC supplement dosage to 2 capsules a day on Thursday or Friday and I also started my Glutathione again early last week also. So thoughts are that it was possibly an extra bit of healing going on. Because I woke up last night and low and behold my arms had severely dried out and there was a whole lot of dead skin flaking off with mostly dried but less inflamed skin underneath. Its such a weird and frustrating thing this TSW.

#unanswered question // What caused the massive itch attack in my arms?

I have also been getting more frequent sweat attacks during the day. I've never experienced anything like them before TSW apart from a couple of times earlier this year when I was reducing my steroid usage, and I just put them down to stress from work/packing/moving my life. But now I realise they are definitely TSW related. I'll just be sitting at my computer not doing anything out of the ordinary and all of a sudden my arms will start tingling and then I can feel my singlet getting damp and next thing you know I've got sweat droplets running down my back!!!!! Never in my life have I ever had sweat droplets running down my back!!! EVER!!!! Let alone when I'm just sitting round doing nothing much at all. So anyway yes over the last couple months these have been increasing in frequency… going from maybe 1 or 2 a week to having 3 in one day last week. Its a really strange feeling and I'm glad to know that I can sweat and that my sweat glands are working but I just wish they would work when its a normal time for them to work, like when I'm exercising. Not when I'm sitting around and certainly not while I'm sleeping!! Oh yea haha then theres the night sweats… jeesh they are fun. NOT. I now know to keep a couple sets of spare pj's by my bed. But the interesting thing with my night sweats is that I only seem to get them when I dream. And I'll know I'm dreaming cos my subconscious will be like 'hey your practically swimming in your pj's… time to wake up' and so I wake up, but you know how if you wake up in the middle of a dream, you know you were dreaming? Yea well that's me pretty much every time I wake up saturated.

#unanswered question // Why do I get massive sweat attacks during the day when I'm not doing anything?

#unanswered question // Why do I get night sweats from dreaming?

Its turning into a long post today…

So my second thing that I wanted to write about today is a couple weeks ago I had a lovely person comment on my blog and suggested I try Bentonite Clay masks to heal my face up a bit. I did a bit of research and saw some pretty positive reviews and because it's cheap enough I decided to give it a go. I was also kind of getting to the point where I felt I was doing all the right things for my skin and kind of started getting a bit impatient for something to happen so this has also made me feel a bit more positive and proactive which is always a good thing :)

So anyway my package arrived yesterday and here are the first pics….


Mask on…


So I thought it was a great result! I mean nothing is going to magically make me all better. But it reduced the swelling a little, it reduced the redness a little and it reduced the flaking… admittedly after an hour or two my skin dried out again and started flaking a little but it was definitely pretty great for the rest of the day. 

So this is going to be me over the next couple weeks… face masking every morning to see what happens :)

So heres what I did…

- 1/2 teaspoon of the Bentonite Clay - Aztec Secret, Indian Healing Clay, 1 lb (454 g) from iHerb

- A little water to make quite a runny paste (my skins so dry that almost after 10 seconds of applying the paste, my skin sucked all the water out and it started drying almost immediately. So make sure you have some warm water on hand to re-wet it pretty soon after application)

- I don't have a spray bottle unfortunately so instead I just filled a jar with warm water and kept dabbing my finger in the jar and spreading it over the clay paste

For the first 10 mins or so it felt really tingly and a my skin felt like it was throbbing a little.

I left it on for 20 mins… adding the warm water with my finger ever couple of minutes.

Washing it off was a bit messy haha. I'm going to have to perfect this technique. First off I tried wiping it off with a face cloth… this hurt a little so I stopped that. Then I just ended up cupping water in my hands and wiping the clay off with my fingers. Probably not ideal as I managed to get my sleeves, the bathroom bench and floor all wet in the process. 

SO that is the beginning of my next experiment! I'll report back in a couple more days and fingers crossed the improvements continue :)

Wednesday, 4 June 2014

Antihistamines and a little TSW fun

I thought I'd do a quick, very unscientific post on antihistamines and how the affect me... If I don't take any antihistamines and I try and sleep this is what the inside of my brain looks like...

Theres just this little part in there that absolutely refuses to go to sleep! Sometimes I feel like the rest of me is in a coma and but this little part of my brain just refuses to turn the light out and I will lie awake for hours. Most of the time I will end up researching on my phone all night long.... thank god for wifi on phones now! Last time I was going through TSW and I didn't have an iPhone, I read more books in 5/6 months than I have in probably my whole life and thats not a bad thing... its just my arms would ALWAYS go to sleep whilst trying to prop up the book, hold my little torch light and keep the blanket just over my shoulders but not touching my chin. Talk about difficult.

Anyway, I try only take them a couple times a week and they are usually pretty effective at putting me to sleep, I don't ever sleep right through even with a higher dose, they just make me feel drowsy enough to actually fall asleep and not be awake for to long when I do wake up, and the other couple of nights I just lie awake and contemplate.


Also because my last post was a bit of a downer I ended up searching for some joke things to cheer myself up a bit. I don't usually like these sort of sarcastic jokes very often but I thought that these ones were quite fitting :)

This ones my favourite! 

Sunday, 1 June 2014


Most days I'm thankful... some days I'm over it. Today I'm over it.

I know I'm only 2 months in and I've still got a long road ahead of me but sometimes you can't help but feel a little disheartened and a little bit down. I know last week I said that I thought I was coming into a break... Nope, it was just me having a good day. Was just all part of this never ending cycle.

I had my first feeling of wishing I was normal looking so I could go out and have a bit of fun on Friday night... Don't know why Friday. I don't think anyone was doing anything special. I was just home by myself cooking dinner because my sister and partner were late home from work. And I was a bit lonely and just had a bit of a gutted feeling. I would have loved to put on a pair of heels and go out and before all this, that is exactly what I would have done!

Today I'm just sitting in my office watching the rain come down outside and feeling over waiting. Waiting for my skin to get better. Waiting for my skin to get worse. Waiting for the itching to stop and the flakes to stop falling. I really hope that I can stop waiting soon.

Pics for this week...

Love the way fluff sticks to oozy spots... not.

All I ever wanted was just to be normal... and now I look like I'm 28 going on 68 with far to much botox, bald spots and sun burn. I know I shouldn't be complaining because there are heaps of others out there who have been and are in a far worse state than me. I guess everyone just has good days and bad days now and then and I must say it is hard to stay positive all the time and believe that this will all go away one day and I will eventually be 'healed', but most of the time the thought of having smooth skin again is the only thing keeping me going so I will just keep thinking about that smooth skin.

In the meantime I want to try and be a bit more proactive again in speeding up this process and I am looking in to ordering some bentonite clay as recommended by a fellow TSW comrade so I can start doing clay masks and I am also going to see if I can get a referral for doing light therapy or just find a place that has a good sunbed with UVB and give this a go also. 

Fingers crossed for a better mood tomorrow.