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!!