Sunday, December 8, 2013

Week 17

Just came out of a flare.... I was having relatively calm days when my face started getting all itchy last weekend... then I noticed the dreadful thing - THE SMELL!! Yes, my face was oozing....................sobsobsob..... luckily it was nowhere near as bad as the first two months.... but still, it's really really dreadful...

Luckily, a week ago I a friend convinced me to see a Chinese doctor where they gave me an acupuncture treatment and some Traditional Chinese Medicine (TCM), and right after I had the acupuncture I could feel that it helped with the oozing - and overall it made me less itchy as well!! And the TCM helped me keep my skin at bay, which I'm so thankful for!! I'll keep seeing the doctor and hopefully it helps speed up my TSW (nightmare) process....

So far my skin has been improving.... My relatives (who I've seen last time around 2 months ago) told me that my face doesn't look as red now, and it looks much smoother, which is true when I touch it myself. I don't need to moisturize as many times and it certainly isn't as flaky as it used to be.  When I wake up now, it's much less painful due to dryness and I also don't need to moisturize my body as much as before. Now I usually go for just an almond-olive self-blended oil for my arms and legs, once in the morning and once after shower at night and I'd still feel ok. For my face I still use the Dr Fukuya lotion and some facial moisturizing cream.

Overall my skin is still itchy, just not as dry. But on the appearance it still looks dry and problematic because of all the elephant skin... Good that it's still winter so I could hide my ugly elephant skin...

Now that my skin is more stable, I'm constantly a bit worried that a flare will kick in anytime and I'll go back to those dreadful moments again... I guess this happens to everyone going through TSW?

Stay positive! xxx

Sunday, November 10, 2013

Day 86 - Week 13

It's been a while since I've last updated.  Just thought I'd give a quick update here, and I'm glad to say that I'm bringing good news!

Overall speaking, I feel much more energetic than the first two months. Compared to the beginning times when I felt like collapsing after 8 hours of work at the office, I now have energy that will last for a day for most days, although I do get really sleepy when I don't sleep well at night. It feels so much better with energy back because it feels like I know what I'm doing, compared to sleepwalking before.

Face - much less red now, and I feel like it's closer to normal color.  But when I look at pictures I take with others, I still look darker in color and a bit redder. I don't know if that's my normal skin tone or if it'll go away... but at least now I can pass as a normal person without people asking if I got a sunburnt.  I'm still using Dr. Fukuya's skin repair lotion, and I feel like it's helping.  My face doesn't have flakes all over, just patches near the upper lip and sometimes on my forehead, and when it does peel the flakes are much smaller. I also don't have to moisturize as many times. I remember during my worst days in the first month I moisterized probably every 15 - 30 minutes to make it less tight and tame all the flakes (cuz I had to work and I don't want to scare people away), but now I probably moisturize like 7 - 8 times a day, and sometimes less. 

Limbs - The redness pretty much subsided. But there are many patches all over. And you could still clearly see elephant skin all over, with lines and creases everywhere. But the general feeling is much less uncomfortable, at least I don't feel like my skin is tugging on me when I move my limbs, and it doesn't feel like it's so dry that I couldn't move when I wake up. I also don't have to moisturize as much in the morning! Although by the end of the day, my skin would still get pretty uncomfortable that I crave for a shower. And it's still shedding skin, not as much as before though.

Hands - this is the most swollen part of all. My fingers are so swollen that I couldn't put on a ring that I previously found a bit lose. They also itch pretty bad sometimes.

Chest - for some reason, my chest sometimes get pretty itchy. I'm not sure if it's because it gets sweaty easily and the heat makes it itch. Right now I feel like it's the hardest place to heal.

Temperature regulation - it got better these days as I don't shiver badly for most of the time, though occasionally I get very cold being in the air-con room.  But now I sometimes sweat easily, especially under my armpits and chest area. I feel like the heat is just trapped inside my torso but it's not able to spread to my limbs to disspiate the heat. It's pretty frustrating sometimes as it makes my torso itch, but my limbs would feel a bit cold if I take off my jacket.

Hair loss - the other day I was taking a shower and quite a lot of hair came out. It totally freaked me out!!! And I lost quite some hair when I woke up.  But these couple of days I lost less hair. I really don't know what to do with it, but I hope it stops losing hair because I feel like my hair is thinning... I'm so worried about this [sob sob]

Overall I feel like I'm making progress, despite slowly. Hope everyone else is also showing signs of healing! :D

Wednesday, October 2, 2013

Day 46 - Week 7

It has been rough, but I will say that there is progress despite its sluggish pace. As usual, an update to my skin:

Face - Improved!
This has been the part with the most progress.  I haven't had the dreaded cuts and blisters for at least 2-3 weeks now, and the red and flakiness had improved as well! Now it looks slightly red, dry, and occasional flaking in areas, as opposed to flaking for the whole face at all times. And the oozing has improved a lot as well, now ooze will only be once in a while and more like sweat which goes away much quicker.  My swollen eyes has also been better now, at least they don't swell so much that they hurt, it's just slightly swollen and still extremely dry. I still get those gooey stringy secretions in the corner of my eye, hope that it goes away in time.  And the vision do get slightly blurry at times.  One thing to mention is that I've been using Dr. Fukuya's skin repair lotion that I bought online from his blog, since I've read quite a few good reviews on it.  I feel like the improvements on my face is sped up by using this lotion, and I've been getting comments from my boyfriend, a colleague and friends that my skin looks better!!  So I'm definitely recommending this lotion to fellow red skin warriors, especially if you have it on your face.  I've just started to use it on my arms and shoulders as they've always been super dry like sand paper, we'll see how it goes.

Arms and legs - Worse T.T
It's been less red these days, but it got itchier also for some reason. I would easily get tiny little bumps randomly, probably hives, but they would go away pretty soon. If I could be good enough not to scratch my skin raw then it wouldn't be of much damage to me, but it's hard as hell! And the little bumps can go everywhere, like literally. One moment it could be at my lower calves, then the next it would be on my back at the shoulder blade, there was once that I had one bump on the cheek of my bum!! I was like what the heck!!?!?

Feet - worse T.T
I've been having eczema on my ankles before I started TSW, but ever since I've started, it's slowly spread from the top of my feet to my toes as well, and I feel like my toes are at its worst now!! The skin has become so rough and itchy, it even hurts just to bend them, so horrible... And I'm constantly scratching one feet with the other under the table, I bet others have noticed my fidgeting movements when I'm sitting in the office, but then what else can I do???

Sleep - worse...
As it got itchier these days, my sleep has deteriorated. Every night I would wake up at least once and undergo a major scratch fest, and it takes longer for me to fall back asleep. I also get really itchy when I wake up, sometimes with little bumps in particular areas. These bumps are just so annoying!!!

Body temperature regulation - Slight improvement
It's been slightly better in a sense that I'm not so sensitive to air conditions now, so I feel OK to sit in the office for 8 hours, but I still feel really dry and prefer not to be in air-conditioned places. I still crave for sunlight, though too much exposure would do more harm than good to my skin. I'm starting to sweat more these days, but then sometimes I feel like it's not normal sweating, like I would feel very hot and sweat during the night when I sleep, and I get particularly sweaty when I just wake up. But during the day, I don't sweat that much, even when sitting under the sun. I believe my temperature regulation ability still has a long way to go.

Overall - so-so
There's been some goods and bads, but considering that I'm still in the first two months of withdrawal, I'd say I'm already grateful to see some improvements. I've always thought to myself that even if I don't ever get better, staying on steroids is never the way to go, particularly if I am to have any kids in the future. So there's nothing to lose for going on this journey, so yes I will have to stick to it! Wish a speedy healing to everyone!

Thursday, September 19, 2013

Day 33 - one month down!

It's been officially one month now! Yay me!! Like Juliana writes in her blog, I'll give myself a pat on the shoulder - It truly has been a torturous month for me, especially given it's the first month of TSW.

Although it really has only been a month, I've already been noticing some progress. The most remarkable one being my face. Actually, the difference has been various, some positive, some negative. Starting with positive ones first - I don't have the blisters and cuts now, unlike the first 3 weeks of TSW. The experience was so horrific that even with only this progress I'm already feeling so grateful. Now my face is mainly red and flaky. The flakiness has also been getting slightly better, not as bad as it was at the beginning. And I don't ooze as much this week, and it's not as itchy as well. The negative side is my eyes. They have been swollen from the very beginning, but it has gone worse. Starting this week it's gotten so bloated that it's starting to hurt. I think I'll have to go visit the doctor today and have a look.

For my body, my legs has officially stopped oozing. Yay! Even if it did it would only be very minor and stops within half an hour. My skin everywhere would still be itchy, but the itch these days are not as intense - they would subside sooner, and usually when one place is itching real bad I would try to scratch another place to distract myself, and I feel like these days it's easier to distract my itch from one place to another. But my skin is still super dry, sometimes so dry that it hurts moving. Especially my hands these days have been dry and a bit swollen that there have been cracks on my fingers which are super nasty. And my toes have become very itchy and dry as well.

For my body temperature regulation, I've been getting better these days, at least I could stay in the office for a day without the urge to escape downstairs in the hot humid air of Hong Kong, which a normal person would find it unbearable just to stay out there for 15 minutes without sweating like a pig, I feel just comfortable staying outside. And I still crave to stay in the sun because I love the heat on me, but at least now I don't shiver like mad when I'm in the air-conditioned place.

My sleep these days hasn't been so good, I've been having those weird sweats at night, but not as bad as I used to get even before TSW. But I would feel very hot and have severe itches all over, and the best part, smell bad. So I'd wake up at least once a night for this week, but the good news is at least I get probably like 5 to 6 hours of sleep each night, enough for me to get by a day.

My appetite has been crazy. I've always had a big appetite, but these days I'm eating like there's no tomorrow. And I'm not restricting my diet like cutting out chocolate or cheese and stuff. I could do like two bowls of rice for lunch, then soon afterwards I could eat all kinds of junk food like biscuits, cookies, cakes, and these days mooncakes, etc. I always wanted to eat healthier so as to speed up my recovery, but I'll have to work on that.

33 days closer to healed clear skin!!

Tuesday, September 10, 2013

Day 24


Skin: red and itchy all over. Flaking has been slightly better these few days in a sense that it's not as scaly as before, but it's finer these days. But still super duper dry.  One marked improvement is that the oozing right above my ankles had stopped since yesterday. Fingers crossed that it will since stop oozing!

Face: less blisters and cuts, and much less oozing now. Compared to last week, I don't always smell the ooze now, just occasionally when it oozes after I scratch. But still very red and flaky.

Swollen eyes: Lately I've been having blurry vision. I know they say it's a common symptom in TSW, but I'm a bit worried because Dr. Fukaya said steroids could cause cataract... If my blurry vision doesn't improve soon I think I'm gonna have to have my eyes checked...

Temperature dysregulation: I'm still feeling a bit cold in general, but it's improved. At least now when I sit in the office I don't shiver real bad and I don't have to hug my hot water bottle tight. I'm so grateful even if it's just this tiny bit of improvement because it's really really uncomfortable the way I feel so cold just being in an air-conditioned place. I always want to be soaked in sunlight, I'd want to walk in the sunlight when I'm on the street, it just feels right - I'm literally chasing the sun cuz I'll walk where ever there's sunlight! Even when I'm sweating a bit (only a bit even after walking for 20 min at noon in the sun) I still want to be in the sun. Something is really wrong with my temperature control...

My next milestone: 1 month!!

Wednesday, September 4, 2013

Day 18

As a friend that I've met through ITSAN said, "One day at a time"...

Yes that is how I get through each day. I couldn't dare to think of how much longer this is going to take. I can only thank God each day for bringing me enough grace to get by each day. One positive side of TSW is that I haveh come to appreciate things SO MUCH - to have enough (although disrupted) sleep so that I could wake up and go to work; to not have the worst skin of my face possible to that I have the courage to go to work; to have the most wonderful mom to takes care of me and leave me worry free even though she has to work, to have the most loving and supportive boyfriend who always encourages me... Yes, however the days will be, however the strength that you will have.

I talked to my parents about my decision to go into withdrawal on last Friday, and I am just so glad to hear that they are supportive. They tried offering me suggestions on ways to ease the itch, how to sleep better... I really thank them for their caring, but no, they really wouldn't understand the torture and suffering that I am going through. I tried to explain that it's like I'm quitting from a drug addiction, which is technically true. It's not just about the itch, there's also the shivering, the weeping, the burning, the socially impaired, the insomnia, the lowest self esteem... Really, I don't blame them for not understanding all this, but it just feels frustrating how those who are closest don't understand how I feel, and there's nothing that they could do to really help with the problem, only time can heal.

It's been dips and hills these few days. First is my face - it hadn't really gone too well from the last flare since around day 13, and then on Monday night (day 16) my face got so itchy that I just couldn't resist and scratched my face, and boy was I regretting it so much afterwards. It got really weepy, and I kept dabbing tissues at my face before sleeping. I swear to god that I will avoid scratching my face at ALL COST. I just prayed so so so hard that night to let me face be somewhat OK for me to go to work, and hallelujah I was able to go to work the next day, although there's such big area of wound that I felt like there's a big hole on my face. My face was red, luckily it's not flaming red like it did get before. Today I feel like the wounds are healing, and it's got really flaky. Essentially the whole face is flaking and it's just a matter of time when it comes off, so I have to put moisturizer like ALL THE TIME and keep peeling off flakes that are already on the edge of coming off, which is really annoying.

My limbs have been red, dry and flaky as usual with occasional weeping in small amounts, not much progress.

And I still smell weird. This is especially bad when my face is weeping and I could smell strongly the weird ooz smell. But even when I'm not really oozing, I could still smell the weird smell. Is is the sweat or what, anyone?

Like my dad said, it's NOW OR NEVER. This is a battle that we must fight!!

Saturday, August 31, 2013

Day 14

[Change of Blog title]

So I've changed my blog title to "Dreaming of an itch free life" instead of "Defeating the red scratchy monster", just so people wouldn't get confused with the book "Taming the Scratchy Monster".  Let me just say how much I long for my dream to come true...

Today's condition:

Face - slightly better with the wounds, less weepy, though when I sometimes uncontrollably scratched my face it wept for a while but luckily dried up not too long later. Still red like an angry lobster, and super flaky, eyes still swollen.

Limbs - still the same, red and flaky, I think my arms got more itchy today. I realized that my legs are constantly a little weepy, though it's pretty minor, it feels more like sweat. Luckily it doesn't really bring too much discomfort, but I just feel like it's giving me a weird smell. My boyfriend has always told me I have a "Celine smell".... it feels so embarrassing but he says it's ok... I really really hope it goes away as I get slowly healed...

Body temperature regulation - this has been one of my biggest problems, especially today. I'm feeling pretty hot today, like I'm sweating a bit, but when I turn on the fan blowing right at me I feel a bit chilly, so now I'm having the fan blow halfway at me and myself left sweating a little. Sometimes I wonder if it's actually weeping rather than sweating, but then I kinda feel hot....

One thing I've noticed last night - I woke in the middle of the night feeling hot and itchy, so I had a mini scratch fest and I noticed that the itch was spreading - first it was my upper thigh, then slowly down to the knees, then the back of my knees, etc, and the same happened to my arms. I don't know if it's only myself since I would distract my intense itches by starting a new scratch somewhere else, and it sometimes works. After some time my body cooled down, (and it's obvious since I started feeling shivery and needed to pull my blanket tight around my body so that my body was in no contact with the "outer air"), the itch stopped and I fell back to sleep.  This morning when I woke up, I felt hot and what happened last night happened all over again.  So I'm guessing the itch that I have now is somewhat related to my body regulator being dysfunctional, and it's no longer eczema that's causing the itch now.

Friday, August 30, 2013

Day 13

Nononono it's happening again...

When my first flare started on day 5 it got really bad on my face, I had blisters and cuts and it kept weeping a little bit... it slowly healed the next few days, despite slowly and painfully, it started to heal.  Up until last night, my face got really itchy, and even though I can usually refrain from scratching my face at all costs, I still wasn't able to resist a few times, and it was weeping afterwards.  And today, I feel like it's gone back to my day 5 flare condition - crusty, occasionally weeping, with very dry flakes. I am only thankful that it's a tiny bit better than last time as it doesn't have as many cuts and blisters, but still... I couldn't go to work at all, and I feel like crap.

As for my body, it's pretty itchy all over, mainly on my limbs. It's a little weepy right above my ankle for both feet, but luckily it's just a little. My skin is now in a pretty weird condition - it's very dry, but not so dry that I couldn't move as I've experienced before, it's red and flaky, but it doesn't have wounds as easily as I expect. In the past usually when I scratch real hard (and that's most of the time), it gets cut, but not it seems less likely.

My eyes are still swollen, and lots of secretions as well, and it's also a bit blurry since last week. My body is quite bad at regulating my body temperature, as I'm even feeling slightly shivering when the fan is blowing right at me, which is totally not common given that I live in Hong Kong and it's summer now so it's like at least 28 Celsius degrees.

Overall my skin is super red... when will all this go away.. please...

Monday, August 26, 2013

Day 9

I've been having my first flare since my withdrawal  4 days ago, with my arms and legs having progressive itching, and the most severe was my face - it started to have cuts and blisters across my forehead and cheeks, and it was oozing constantly. Luckily it didn't ooze crazily so that I could still at the very least go to work and be "productive", but I could constantly smell it and it was just so unbearable. Honestly speaking, I don't know if I could continue going to work since starting the withdrawal.  Every night I think tomorrow I might not be able to go to work - I just pray to God and ask that if He wants me to go to work, I'll go, if not, I'll just take it easy and take leave. I feel like I have no control over life at all, but God does.

These days my self esteem and confidence is dropping low - my face is constantly red like it's really sunburnt, and I'm just so worried how my colleagues would think. I'm so worried that they'll think I don't look "professional" enough and fire me, after all it is somewhat client facing where I work, but then it would probably be a relief if they did, since going to work every day is so hard for me - just waking up, and looking myself in the mirror is a great challenge itself, let alone managing my skin and getting ready to leave home. I ask God each day to give me strength to carry on and that people will accept me for who I am.

The only good news is that the cuts and blisters on my forehead and cheeks did start to heal - it hurt by the touch when it first started flaring up, but now it's just flaky and really red, so at least it doesn't feel as bad. My arms itched quite a lot last night, but luckily my scratching last night didn't leave too many deep wounds, just some cuts on the surface so they don't feel extremely bad. The lower part of my right above my ankle was oozing last night, but again luckily it wasn't oozing crazily so I just slapped on a few rounds of baby powder to soak it up and I was able to sleep. Same goes to my chin, which was oozing a bit and I just used a few rounds of baby powder before I was able to fall asleep. My sleep wasn't that good though, as I woke up in the middle of the night feeling pretty itchy, and it took me a while before I was able to fall asleep again.

I'm really struggling right now, if my condition gets any worse, I won't be able to go to work.  Really, should I talk to my managers about taking a month of sick leave?

Day 8

So finally, one week down. God it felt like forever. Looking at all other red skin warriors' blogs, seeing them going through three digit days or even years of withdrawal, makes me feel like I could never get there. But then seeing all those stories of being completely healed gives me so much hope of getting past this nightmare that has haunted me since I was born.

A little background of me - I've had eczema since I was born.  Needless to say, doctors prescribed me with steroids once they diagnosed eczema, so god knows how many years I've been on it. The good news out of the bad news is that I've always known that steroid doesn't do us good, so I've always tried to use as few of it as possible. But things got worse and I've changed doctors, and the one that I've seen a couple of years ago started giving me oral steroids. I would have to pay him a visit every few weeks, and he would always tell me, "you know your eczema is incurable right?" Thanks doc, what a relief. And this situation went on until last week when I was feeling a bit desperate and looked for blogs for people who suffered the same as I do, I found out about Topical Steroid Addiction. To my surprise, I matched ALL of the symptoms. Without even much thought, I decided to WITHDRAW.

Saturday, August 24, 2013

Day 6

7 days ago I was still ignorant of the Red Skin Syndrome.  I had a flare up and used oral and topical steroids. It was not until 6 days ago I stumbled upon a Red Skin Fighter's blog that I realize that my symptoms all match that of Red Skin Syndrome.

Today marks the 6th day of my start of this long battle of Topical Steroid Withdrawal. I hope to use this blog to record my progress.

Wish me luck!