Wednesday, 13 August 2014

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

Monday, 4 August 2014

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).

Friday, 1 August 2014

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!