Day 130 & Clofibrate Ointment

I received (with much excitement) Dr Fukaya's Clofibrate Ointment and Skin Repair Lotion in the mail the other day. I've got to say that they arrived so quickly!! I wasn't expecting them to arrive within a week but they arrived probably 4 days after I ordered them.

I'd just done my clay mask and walked out into the kitchen and there on the counter was a box addressed to me with Japanese writing all over it!! I was so excited I ripped it open then and there and literally ran back to the bathroom and applied my first lot of the ointment and repair lotion.

Ive been moisturiser free for so long now it was such an invigorating feeling to feel my skin all soft and supple. I tottered off to my part time job with much delight. The ointment actually kept my face feeling fairly soft most of the day.

Now I do want to point out that I do feel SLIGHTLY more itchy after application and it does make my skin feel slightly more vulnerable at the mercy of my stubby fingernails. But I think over these last few months it has strengthened up enough to be ok. Probably if I was any worse than where I was now I would not have ordered it.

I do have just under 2 months left before I hit my 6 month mark and need to got back to work on a more full time basis. So this gives me time to really try out the ointment and repair lotion and if it all goes pear shaped I still have a little time left up my sleeve to do stop using moisturiser and go NOMO again.

I have in my mind that because I mainly used Elidel on my face and thats probably what has caused the most damage, that using the ointment on my face only will hopefully help... thats what I'm going to tell myself anyway. I'm not going to use it anywhere else as the rest of me is still happy moisturiser free and thats how I want it to be, not dependant on moisturising top to toe for the rest of my life.

So far I haven't seen much in the way of improvements, but hey wouldn't that be a miracle if we discovered something that works as fast as steroids that isn't actually bad for you!! I have definitely learnt to be more patient with my skin throughout this ordeal.

My first face shots a couple days after using the Clofibrate Ointment once or twice a day.

My wonky-eyed serious face...

And heeeello chubby cheeks.

Not much difference from my last face pics other than a little smoother and maybe not quite so red? Don't know. It's hard to tell. I could actually even be coming out of a wee flare that I've been in the last week or so cos my neck is actually feeling a bit smoother today to and I haven't used anything there.

Oh actually on the flare note... I did start having regular night sweats again for the past couple weeks after about a month or so of no night sweats so I'll see how I go tonight and fingers crossed I will have won this round of flare ups and the TSW monster is cowering back in his corner of the ring for now!!!

Things I've noticed lately...

• Night sweats have returned for the last week or so but mainly on my legs not so much around my top half.
• I actually had one or two sweat attacks during the day also.
• I've got more clear skin on my arms than red skin now, and the red skin is pretty obvious as it is in little dry/red rashy thick skin lumps (couldn't think of any other way to describe it)

Thats about all I can think of at the moment... slowly but surely beating this thing!! :D

Infographic :: Where and how much I used TS and Where I am flaring at the moment

I saw on someone else's blog a little while back a picture that demonstrated where and how heavily they had used TS prior to withdrawing and I thought that was a really cool idea. So I sat down at my computer and had a go at putting something together myself that shows how often and where I used TS and also where I am flaring mainly at the moment.

The First one demonstrates where and how frequently I used TS and Elidel

The Second one shows where I'm flaring/still rashy at the moment 

Tomorrow I am officially 4 months into this and I'm pretty amazed at how far I've come and how well I'm doing considering my history and how bad my last 'unknown withdrawal' was. I feel like I've gotten off relatively easy this time. Fingers crossed its all healing from hear on out.

My mum has also decided to throw us an engagement party in September.. Gives me a few more weeks to do a bit more healing. I've also invested in some of Dr. Fukaya's Clofibrate Ointment and also the Skin Repair Lotion... just to see if I can get my self looking a little less inflamed by the engagement party... I have a feeling its going to be a pretty big family affair and even though the family all know what I'm doing it'd still be nice to look a bit better and be able to have them all say 'oh what a lovely ring... and your skin looks AMAZING!' haha yea its a bit of an ask but you never know.

Once the stuff arrives I'll report back on any progress (or not as the case may be).

Day 118... Nearly 4 Months!

Life has become semi normal for me again. Being back at work part time it has really given me a chance to see how far I can push myself without pushing myself over the edge. It has meant that I've become a little slack on my progress posts tho :(

Life update first...

Well, last Saturday 26th July, my nearly 7 year partner asked me to marry him!!! I'm still in slight amazement and disbelief that he's finally asked me... I'd always thought we would get married someday... but never had I ever ever in my wildest dreams imagined that he would ask me right in the middle of TSW when this would be the worst he's ever seen me... and he still wants to marry me!! How crazy is that!! I was absolutely blown away and he planned it perfectly. I didn't suspect a thing!

Skin behaved perfectly for the two days while we were away

The ring

Spot where he proposed

Yea, so as you can tell life is pretty good at the moment :)

Skin Update...

The two days that we went away last weekend were probably the best my skin has been since pre-TSW. It was calm both days... no redness... no itching... no flaking. Just really really good :) it was almost as if my partner had let my skin in on his little secret and my skin had decided to behave for those two days.

Before the engagement and since the engagement my skin has been pretty up and down. When I say skin I really mean my face, neck, chest and hands as most other parts of me are basically rash free. I never moisturise anywhere and even when I jump out of the shower these days, I never feel as though I even need to moisturise anymore!

This last week I've been having a bit of a flare on my trouble spots... it could be the start of a big flare, but I kind of doubt it... or it could just be because that time of month is due next week.

Apart from the dry skin... looking nearly normal today

Until I smile... those puffy smile wrinkles just don't want to go down!

Looks like Ive been in a fight... Lucky its not my ring hand!

So I think to sum up my skin situation at the moment I'd say its pretty stagnant with a few minor flare ups now and then. Kinda just waiting for something to happen... for my skin to make the next move.

Things I have noticed lately...

• Daytime sweat attacks have stopped completely
• Night sweats have been reduced to maybe once a week and have only had one so bad that I had to get changed in the middle of the night probably once in the last month.
• I had a minor annoying sore throat for about 2 weeks that never developed into anything and kind of just gradually went away (a little unrelated to TSW but thought I would mention it anyway as I though maybe it has something to do with my immune system growing stronger)
• I've found a few more lymph nodes... Feel a little uneasy about this one.. but I know that swollen lymph nodes are all part of it
• I had heartburn for the first time in my life two nights in a row (also unrelated to TWS but anything out of the usual at the moment kind of makes me wonder)
• Red sleeves are pretty much gone, I just get a little red on my hands, wrists and up my inner arm sometimes
• I also got a little bit wheezy when we went away on the weekend... I used to have to use my puffer all the time. But I haven't needed to use it in probably over a year so I though that was a bit strange and I did have a puff on my ventolin even though its steroids... gotta do what you gotta do to breath!

99 days

I've been a little slack with my skin recording the last couple weeks. My 3 month anniversary has been and gone and its my 100 day anniversary tomorrow so I thought its definitely time for another update!

Life update first..

I started back at work part time last Wednesday, only for a couple months while a friend is away on her big OE in Europe but its been a really good way to test my self out and see what my limits are with working again. Its been the perfect way to do it as I'm completely flexible with my hours. I usually make it into work about 9.30-10am and finish around 2-3pm which means that I'm able to come home and have a nap or just some time to chill out and calm any itchies before everyone else gets home and I have to cook the dinner :)

I also had my first 'night out' last weekend where I was able to dress up and I even put on a little bit of makeup and wore some nice clothes! It was for a friends birthday and we went out for dinner and then to a comedy show which was sooo good! I didn't drink but it was so nice to just go out and forget about my skin problems for a little bit. I still looked a bit swollen and puffy but I just pretended that no one could see me haha. Im getting quite good at doing that these days. Just pretending that there are no judgemental people in this world.

Skin update..

So, before I had that night out for my friends birthday.. I think I had maybe a week or two of really nice calm (still slightly swollen but smooth) skin. After the night out with my friend I did have a bit of a flare on my face where it felt like my cheeks puffed up so much they were touching my eyeballs... they didn't really but thats what it felt like. Since then my face skin has been trying really hard to get back to that smooth stage but it just hasn't quite managed it. My neck and chest also decided to follow suit and be little pains in the ass.

Pics...

SEE MY PAINTED STUBS!!?

I also had a flare on my arms a night or two after I started working again. I think it might have just been my anxiety levels on the rise slightly. Thats something I'm going to have to learn to keep in check somehow. But a day or two after my arm flare, they all dried out and I ended up making snow flurries whenever I moved.

Pics..

It was like this on both arms.

Luckily this dry stage lasts only a day or two, now my arms are pretty calm again now with the odd itch here and there.

I've also been feeling energetic enough to get out and get a bit more exercise lately. Heres some pics from yesterday when me and my partner went for a hike over to a pretty beach just out of town.

Need to remember to smile again...

So I'm happy (most days) and excited about being free from that medicated prison cell that I've been in for the last 13/14 years and fingers crossed that I'll really be able to do more and more things that I never thought I could/wanted to when I was using steroids. I've just got to keep thinking positive thoughts.

Things I have noticed lately...

• Reduced redness in arms when I have a shower (I used to jump out of the shower and I would literally look like a lobster, I can now jump out of the shower and only have patches of redness)
• Better sleep. I'm still taking the antihistamines, but the other night I managed to fall asleep about 10.30pm.. I woke up once at 4.10am and fell asleep again until 9am.. how freaking awesome is that!! I haven't had a sleep like that in at least 6 months!!
• I've got this weird smelling sweat.. definitely not a metallic smell anymore.. TMI sorry bout it
• When I have my night sweats.. I wake up and my legs don't sting any more!
• My flares have (mostly) definite stages now.. super itchy > raw from scratching > super duper dry > back to new normal

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!

Innnnnsomnia…

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 :)

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... http://www.rawleighs.info. 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 :)

MY SUPPLEMENTS

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

http://itchynomore.blogspot.co.nz/2014/04/active-b-supplements-and-graph.html

and here...

http://itchynomore.blogspot.co.nz/2014/05/5-weeks-2000-views-other-supplements.html

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!!

Done.

:)