Wednesday, 12 November 2014

7 MONTHS - 220 Days

I hit the 7 month mark last Thursday so I'm only a little behind with this months update!

Over the last month my whole 'self' has improved... My skin (mostly), my sleep, my attitude, my energy levels. The only thing that I'm still lacking a wee bit is motivation to get out of my comfort zone where I have created a nice safe little bubble. I feel like I'm just waiting to turn that last corner where my skin feels and looks completely normal again and I can come out of my little hiding hole and yell at the top of my lungs... LOOK AT ME!! It actually gives me excited little butterflies when I think about how that is going to feel :)

But alas.. I always have in the back of my mind the anniversary flare and as those months creep closer I just feel more and more nervous. I feel like I've reached such a great point skin wise at the moment and feel like I'm just teetering on the edge of a cliff. Waiting to fall.

My face and neck have 90% stopped shedding, I'll wake up in the morning and my skin will be a little dry and lacking in moisture but there won't be any skin flakes anywhere. I've not taken any sleeping or pain medication for nearly 3 weeks. I haven't had any night sweats in a month. I'm not tired any more at all. I can usually jump in bed and be asleep by 10.30ish maybe waking up once at around 1/2am.

The only thing that I still get really bothered by is if I put the Clofibrate ointment on my face and neck without having a shower first. The ointment still seems to make my 'quite skin' become 'alive, crazy skin' so I try to only shower and apply the ointment once a day. Its almost like having a shower desensitises the area from being a parched desert which allows the moisturiser to go on without creating a crazy burning sensation like millions of little fire ants running all over my face.

This is me last weekend...

The flash pics are to show how few red spots I have left.

Unfortunately I think I'm a little redder today. And I feel like I've been a little itchier this week.. which all could be down to hormones but I guess only time will tell. 

I also think that the one thing that will really mean that I'm close to healing is either not having the dry skin at all and my skin oils return on my face and neck, or I can comfortably apply the Clofibrate ointment with no problems. 

One thing that I do love doing is adding comparisons!!!

Only a short [and all over the show] update this time... didn't really have that much to report on. 

Here's to happy healing!!

Thursday, 9 October 2014

6 MONTHS!! I made it :)

To be exact 6 months and 4 days or 186 days. Any way slacker over here hasn't been updating as I usually have been just because the last 6 weeks have been SO busy. We've moved house, had our engagement party, I finally brought a car after being carless for the last 6 months, my little business is really starting to take off and life in general is starting to seem a little more normal than it was at the beginning of all this.

Heres a wee (long) recap of whats been going on skin wise over the last 6 weeks...

Days 130 - 138  After getting the Clofibrate Ointment and Repair lotion my skin was relatively calmish for a week or so then I looked like this...

Day 138

I think day 138 was the start of my next flare up. The night sweats came back again after being gone for a couple of weeks. I was more itchy. More red. Had a couple of zingers. My skin was generally more dry, flakey and sensitive. I also got a wee bit of ooze behind my left ear.


I had a few days around here when I started feeling really down and unsure of everything. 

Day 147

TOP day 150 - BOTTOM day 105
Hand comparison pics after using the repair lotion on my hands every day after my shower. They are definitely not this good every day but still a lot better than they were

5 Month anniversary on day 152.  I also managed my first full day out of the house without feeling absolutely 100% shattered afterwards. 

Day 157

Day 164

Day 165

Day 166 - Our engagement party! (with a bit of make-up!)

I managed to cope really well on the day of our engagement party. I'd had a pretty stressful week leading up to it as we moved house the weekend before so I was still trying to unpack boxes as well as cook and make a couple of decorations. I'm very glad that my part-time contract had finished the week before so I had plenty of spare time. 

Unfortunately I think the stress may have finally gotten to me and pushed me into another flare (luckily it was the week AFTER the party :) ). I had a super painful neck, sore, dry, zingers, itchy as heck. Was on the painkillers every day for about a week.

I didn't get any pics of this flare but these next pics are the tail end when its getting a bit calmer again.. note the super dry stretched skin from turning my neck?!

Day 178

Two day after this I had the most amazing skin day I've had this whole journey!! My face was literally perfect except for one red patch on my left cheek! I was absolutely amazed!! No swelling! When I did the pinch test my skin felt thin and normal (not inflamed and thick/swollen).... and then of course I had to totally go and ruin it by eating absolute CRAP.. I think for lunch I ate a whole bag of salt and vinegar chips all to myself and a whole lot of this sickly sweet chocolate slice thing that my mum made (I've got no self control when it comes to sweet stuff - so I usually don't have any in the house!) PLUS takeaways for dinner.... oh my heck.

So that brought on my next flare which thankfully has only lasted for the week... worst on my face but it also affected my hands neck and inner elbows, plus a split on my ear that had been healed up for a month or so also broke open again.

One thing I have noticed which I've found a bit strange is that I'm on the tail end of this flare up but the last 2 nights I've had night sweats again which I haven't had for about 3 weeks. Don't know whats going on there.

In between all these little flares I've also managed to cut back on my sleeping meds. I think I went about a week without taking any before the engagement party and then just the last three nights I haven't had any either. I think I'll take one tonight as my sleeping has been getting a bit crappier again. Last night I went to bed 9.30pm. Woke up at 11.30pm, 2.30am, 3.30am, 5.30am with the sweats, then back to sleep until 8am. I'm SO lucky that I'm able to sleep in a bit in the morning after nights like those.

Today - Day 186

So in 6 months I've managed to go from this .................................... to this. Yippee :) heres hoping the next 6 months are as positive.

Here are also a couple of my updated infographics......

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!

Sunday, 13 July 2014

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.



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.


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