Monday, July 21, 2014

Month 11 - Addicted to acupuncture??

So I think I remember saying that I was doing pretty well a few months ago. Well I feel like I'm hitting a downturn and having a flare at the moment, so it's a bit depressing. To be specific, I was seeing this Chinese doctor who did acupuncture on me which was really effective, like literally that morning after he did it, my flares would go down that evening, and I would sleep like a baby. He also gave me Chinese medicine, and it sort of had the effect of prolonging the effects of the acupuncture. But then after like 6 months, he said his treatment is only temporary and couldn't really cure me, so he referred me to another doctor. On his first referral, after seeing another doctor for a few weeks, I went back to the original doc because I could feel my skin deteriorating after stopping the acupuncture treatment, but after a few more weeks of going back to him he sort of asked me to leave because he thinks I'm addicted to the acupuncture (what kind of doctor asks a suffering patient to leave!?).

So now here I am, my skin worsening after a few months of almost clear skin from the effect of acupuncture, having seen a few other Chinese docs but not any of them could compare with effects of the original one. And then I start to ponder on the thought of what the doc said about addiction to acupuncture - could that even be possible? That acupuncture gives instant healing effect, but in the long run would cause reliance on it?? Gosh it's sounding like the side effects of steroids, which is just crazy and scary. But it can't be, I mean it's not even drugs - it's just a needle in a place in my body - how is that even scientifically possible to cause addiction? But I'm truly starting to wonder if this acupuncture treatment has slowed down my healing process, or could it just be the notorious one-year flare? I wonder how everyone else's experience on acupuncture is like?

Anyway, the good news is that I'm not entirely back to square one. My skin now is slightly red, with average amount of shedding, and less able to regulate body temperature (when I was better back then I was so resilient to coldness and would easily sweat). Comparing to the initial month of heavy ozzing on legs, super red on entire body, and my shivering all the time, this is still progress. Although the most depressing part is that there's an oozing patch on my face that won't go away. It's so hard to manage, especially because I need to go to work and need myself to look somewhat presentable. But still I learn to be grateful for every bit of progress I make during this awful healing process.

Hope every TSW out there is getting through this journey day by day... Happy healing everyone!

Thursday, April 3, 2014

Month 8

This has really been a while... It's been three months since I last had an update on my status...

I feel like my skin in general has been improving quite a lot, although it's still in a pretty unstable state. Overall, the skin has reached another level, not that it doesn't itch anymore, it does, and sometimes it still gets so bad that I need to use my comb to "chain-saw" on myself to ease the itch, but I could feel that the dryness and tightness is gone now. At least it's not itching every single moment of the day. At this point, the itch I get is really nothing compared to what I've been through in my early stage of TSW, and I don't need moisturize as much as I did before. I never did moisturizer withdrawal as it's too painful for me, given that I need to go to work and everything, so I just moisturized whenever I felt like it. Now I just moisturize twice a day: once in the morning and once after shower at night.

The elephant skin on my knees and elbows have subsided a lot as well, although there are still very visible wrinkles on all my joints. I hope they go away in time... Skin also looks dark and redder than a normal person should look, I wonder if this will ever go away....

Sadly, my worst part of the skin would be my face. There's a very rebellious spot on my face that just wouldn't go away. Just a few days ago it was still like an open wound being a bit crusty and oozy which was so friggin frustrating cuz it's been there for like weeks... but it slowly got better after I went for acupuncture a few times. It actually got really itchy two days ago for some idea why. My face has seen better days, now I'm struggling to get back to that state...

Body weight
Around 3 months ago back in December, I suddenly got comments from almost everyone around me saying that I gained weight. I also noticed that my face grew some baby fat, I wasn't quite sure whether it was from water bloat or really gaining weight. Then just now I was going through some of the pictures I took at the start of TSW and compared them with the pictures I took in December, and I think I truly have gained weight. At the start of TSW, I looked unhealthily skinny, and together with the thinned hair I almost looked like a chronically sick person. But now that I've grown back more hair and got a little chubbier, I looked much more healthier (or should I say normal).

Body temperature regulation
I'm glad to say that I haven't been shivering these days anymore. Back in the days I would be shivering real bad in air-conditioned places, now I would be wearing short-sleeves when some of my other colleagues needs to wear a cardigan in air-conditioned places! How surprised I felt! Sometimes I feel like I sweat really easily, especially when I'm a bit nervous like talking to a senior at work.

Hair loss
I feel like I've lost a lot less hair compared to the start of TSW. In the past I used to find at least a few strands of hair on my pillow when I wake up, now I sometimes don't see any at all! And I feel like my hair seems to looks thicker than before...

Overall, I'd say I have improved quite a lot. Even my parents think so. But I'm still far from healed, sometimes it could get pretty unstable too, suddenly having an oozing wound on my face or having itch attacks. But I feel like it's getting there... It was hard to believe how it could get better when I was still in the start of TSW, but now that I'm seeing progress, I've come to realise how true TSW is... To all those who are going through the same, stay strong and believe that you will definitely get better!!

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!!