MONTH 60 [AKA 5 YEARS]


for the first time in the past 3 months, i actually look like myself again.
this month was particular harsh since i was healing pretty well in month 49 and suddenly things went in the opposite direction. ๐Ÿ˜ฆ
good news is, after the low comes the high.
skin seems to be back on track again, for now.

this is just life reminding me how change is always present,
and we shouldn’t hold on to the belief that our skin will heal in a linear fashion, because that’s just not true.
failure to align ourselves with nature will only bring about disappointment.

scroll down for some photos.13 MARCH 2016

something’s not right.
my mood is way off, even though my skin don’t look that bad.
i haven’t figured out what’s wrong with my mood yet, but i just want to note down how easily i tear up at this moment.
the same old feeling of uselessness, with a pinch of “what if things don’t get better soon? what if i can’t do the things i love anymore? what if..”.

fucked up.

sleep was weird, and it’s not the first time this week.
woke up in the middle of the night feeling extra warm, yet my skin is cool to touch.
it’s a heat emanating from within, and i don’t know why!

i also itched a lot last night.
most of my skin feels irritated and rough, some parts were raised too,
but they subsided by morning time.

i can still feel spots on my face.
mom commented on my dark circles yesterday, which means the redness is no longer there!!!

i can’t emphasize how important my mom is to me from what i see in the past 5 years.
difficult times are really the best time to appreciate people around you.

*tears up*

18 MARCH 2016

mood is better now. it’s not hanging by the dangerously low side, i feel more vitality, and can get some stuff done.

takes me 2 weeks to notice the downward trend in my skin. (edit: i now suspect the flare was brought on by chocolates)
my face was doing alright up till 2 weeks ago, then it started getting all sorts of bumpy, and then it became blotchy and dry.
something interesting though – before my skin shows signs of deterioration, a telling sign is when i don’t feel warm.
in fact, last week was the first time this month i didn’t need the fan to sleep at night even though the average temperature in singapore didn’t change.

but now that i need the fan again, it tells me i’m getting better once more.

some parts of my back were itchy, and after scratching i probably ripped off too much skin..
my back gets moist when i lay on my back.

the only parts that seem to be improving is my hands, my palms, and my feet.
all the other showed signs of worsening – hives, which turned into super fragile skin that gets ripped off by me, turning into dry skin and scabs over the next few days.

oh, and that mysterious lower back pain that’s irritating the shit out of me.

sleep was out of whack!
half of the time i can fall asleep around 11pm-12am, but i’ll wake up at least once throughout the night.
the other half of the time, i can’t sleep until 3-4am.
the only consistent thing i do is waking up really early, like 7am in general.

of course, things are starting to look up again, which was how i realized that things got worse in the first place.

which made me wonder, is there something i did differently in the past 2 weeks?

  1. i started taking glutamine (for a little more than a week, then i paused because my skin was getting itchy)
  2. i started using a new strain of probiotics

of the two, my skin show much changes after i stopped the glutamine supplement. so i guess it’s the probiotics, because my digestion seem to have changed a little – lesser gas in general.

could this be the legendary “die off reaction”?
because if it were, i’m more than happy to sit through it and keep it going.
better get rid of the junk now then later, right?

i think i’m only sane because i see some improvements in my body even though there were also signs of worsening in other parts.
in the past, my hands and feet are the last to heal,
so seeing them making a move tells me i’m in the right direction.

guess the body is detoxing through the more fragile and vulnerable spots.
but i’m just making guesses to try to understand this whole situation.

will be observing and updating again.
fingers crossed.

24 MARCH 2016

i can only describe the past 2.5 weeks as a gradual worsening of my skin again.
just goes to show how up and down this process is.

i should be happy that things are moving along, but right now i feel defeated and discouraged.
i know i’ll come around by evening time (it’s the morning currently and things are always feel worse in the AM) though.
but i’ll note it down because for all you know you might think i’m positive all the damn time.
i’m not.

even though i don’t feel too good right now,
i don’t stop believing i will recover, and i’m in fact recovering.


click to enlarge!

sleep is still odd, waking up at 3am is becoming a constant.
i tend to sleep a lot better in the afternoon then at night.
i can’t really recall but i wake after every sleep cycle at night.
last night was phenomenal, i managed to go back to sleep after waking around 3+am,
and i had an insane amount of dreams.
just thankful that none are nightmares. just really odd adventures with random people.

face is all blotchy again, dry and sheds daily.
body is in the dry and shedding phase, my face probably made my body look better by comparison.
hands and feet continue to get better though.

2 nights ago, a spot on my shoulder blade was threatening to ooze.
it has been seeping moisture into my bed for the past week, i know the skin integrity isn’t that good.
whenever my back is affected, so is my sleep.
makes me feel extra miserable when i can’t lay comfortably in bed,
which reminds me of how lucky i have been all the other times when i was comfortable in bed.

it’s still too early to make conclusions yet.

SIGH. i’ll hope for the best, but prepare for the worst.

yesterday i went to see my doctor to get another prescription of my herbs.
he said i’m in the stage where my skin is constantly renewing – thus the dry shedding skin every few days.
not oozing is good.
the two oozy spots (one on my left shoulder blade, the other on my arm) have dried up today.

my doctor seems hopeful though, even though i am still suffering in my own skin.

29 MARCH 2016

no changes worth noting, everything feels the same as last week.
skin still thin and dry, face still rough and blotchy.

legs are doing better than the rest, no more hives at least!
and my back pain isn’t as obvious anymore ๐Ÿ™‚

hoping it ends soon.

30 MARCH 2016

last night i went to the clinic to get my blood drawn out of a whim.
i wanted to do a thyroid function test because i noticed my hair shaft has decreased in diameter (some are as fine as baby’s hair), my hair is less full, i’m more sensitive to the cold, fatigue and lethargy, unable to rest well, and my progressively dry skin over the years.
the doctor said it could be a problem with my kidneys or liver too, but i just wanted to rule out thyroid issues.
surprisingly, most of the symptoms also overlap with iron deficiency.
i’ve been on an iron supplement for the past 2 months, and i didn’t notice any significant changes, so it’s probably not iron issues.

at the clinic, they took my temperature.
“you’ve got a slight fever!”, the clerk said.
“whaaaaaaaaat??????????”, i replied in disbelief.
i found out i’m at 37.5 degC, which confounded me.
but after a day, i figured it could be normal, because it’s in line with all the worsening i’ve experienced the past few weeks.
the chances that it is a die off reaction from my probiotics is even higher now!

so it’s about 3 weeks into the probiotics,
i noticed some changes.
lesser gas for one, my bowel schedule shifted backward for about a week and is back to the normal schedule now.
i was a little constipated when i upped my dose to to capsules (supposedly giving me 60 billion CFU), i wonder if it’s because the poop took longer to transit, hence having more moisture absorbed out of it.
now that i’m back on one capsule, things are normal again. by normal, i mean a 3 or 4 on the bristol stool chart.

skin wise, my arms and legs don’t look that red anymore.
my face though.. sigh.
skin is still very thin and prone to getting rashes, no calm days yet.

i wonder how long my die off will be?

on a side note, my mood is more normal now.
๐Ÿ™‚ signs of better things to come?

(edit: thyroid results are back, free TF = 11.2 pmol/L, TSH = 2.79 mIU/L, both of which falls between the normal range. doctor says i do not have hypothyroiditis, but i beg to differ. just because you need to be way below the normal range in order to get a diagnosis of a bad case of hypothyroiditis doesn’t mean my thyroids isn’t functioning on the lower side of normal. to be technically correct, my levels are normal, but not optimal IMHO.)

4 APRIL 2016

it’s days like this that i fear – not feeling like there are any changes to note.
nothing really changed over the past week, except for my lip area which was hurting and shedding 5 days ago,
it’s not hurting and shedding like that anymore.

otherwise i’m still as dry, blotchy, red, rough, and itchy at night and in the morning.

sleep is still affected because of my back.
the water vapour that seeps through my back isn’t as bad as ooze,
but it makes my bed feel damp and warm after a few hours.
doesn’t really promote good sleep since it’s not winter here.

some slight improvements in terms of skin integrity on my back.
previously oozing spot (it only oozed for a night, complete with raised skin) is still renewing itself every few days.

hands were looking so good at the start of the month, but more irritated suddenly.

thighs broke out into hives again, sensitive much.

last month, i thought i’d be much better by now since things were looking up.
i forgot things are always up and down.
and now it’s the down phase.

12 APRIL 2016

last week, i told myself maybe things will be vastly different in a week’s time, and not surprisingly, things did change a lot over the week.
firstly, over the past week i’ve had my period, that’s one change that might have contributed to the change in my skin.
i also cut out some more food from my diet.
going low nickel on a vegan diet is difficult, but i’m trying.
no more oatmeal and banana for breakfast!
everything is changing, and that’s just a fact of life.

i’d say my skin has calmed down over the past week.

1. face isn’t that rashy anymore, but still dry and changes skin at least once a day, or once every two days if it’s calmer. my eyelids can fold properly, and that’s always a good sign.
2. arms and legs aren’t that red, less rough too. still changing skin, but the skin flakes are very small. they are mostly very low level rashes, i’d say.
3. feet continues to heal, looking so much better. i sort of miss picking the thicker scales, but i definitely prefer better skin over scales.
4. palm is better, BUT hand seems worse, especially on my wrist and fingers.
5. probably didn’t mention this before my scalp isn’t shedding yellowish skin flakes as much as before. now it’s normal looking skin flakes. but the presence of skin flakes means there’s still room for improvements.
6. runny nose improved rather drastically, there’s still some going on but heaps better than the past few months. it’s no longer a running tap!
7. back is a lot better than before, not as dry. still shed every few days, but the skin is not as thick anymore. still seeps moisture when in bed, but also not as bad as before.

my sleep is still out of whack.
last week it’s mostly 12am to 3am, and i’ll be awake till 8am before feeling sleepy again.
the week prior to that i get to sleep till 7am at least. it’s just so weird.

anyway, good news is i get to fall asleep slightly earlier the past 3-4 nights. 11.30pm if i’m lucky!
even though i’ll wake around 2, i’m happy i get to fall asleep earlier.

i also noticed a positive correlation with the ease of bowel movement and the state of my skin.
the better the quality of my poop, the better my skin feels.
it might be the fish i ate, but then again when i was strictly off animal proteins, there were days when my BM isn’t as smooth.
i can’t be sure which is the cause or effect, but there’s definitely a correlation.
as long as the poop is a 3 or 4 on the bristol stool chart, it means my internal environment is fine.

i happened to come across an amazing blog entry written by someone who also suffered from eczema (he’s healed now!!!),
he mentioned about self resentment and the psychological aspect of eczema.
he put my thoughts into words elegantly, and also helped remind me of all the things i’ve learnt while trying to lead myself to better health.
it’s a good read if you need some positive energy!


click to enlarge!

you can see the gradual worsening of my face, right? totally mind fucked me during those 2 weeks.
so glad my skin is much better now. look at the comparison!!! who would have thought things can improve so much in another 2 weeks?
note: i used avene xeracalm cream on my face on the 31st march and a few days prior. not sure if it contributed to the redness, but for a product that’s supposed to soothe redness in the skin, it doesn’t seem to be doing what it should.


click to enlarge!

slow but steady! i still notice vesicles underneath my skin, but it’s definitely a lot calmer than before. the obvious borders between pale and red skin on 27th march is also not as obvious on 12th april anymore. side of palm is making small improvements that isn’t obvious in photo!


click to enlarge!

they sort of look the same in photos, but my hand is actually drier and redder (especially on my fingers).
for some reason my hand is more inflamed. my cuticles were previously flattening and easing out, but they swell up again.
notice the redder cuticle on my thumb? that’s what i mean.
i must admit i am guilty of rubbing my fingers a little too hard several days ago to ease the itch. :X


click to enlarge!

current snapshot of my hands. not too bad ๐Ÿ™‚ looking forward to more progress next month!


click to enlarge!

๐Ÿ™‚ happy feet! probably the only place that’s actually healing in a linear fashion over the months.


click to enlarge!

this is so satisfying to see. ๐Ÿ˜€

can’t wait for my healed skin that’s coming my way!
each month down is one month closer to good skin again.

SUMMARY:

  • 3 months since i started TCM
  • currently still taking probiotics, multi vitamins, vitamin d3 and k2
  • not very consistent with l-glutamine at the moment
  • acv once every 2/3 days.
  • 2 weeks into vegan diet, still working towards 100% no animal protein.
  • 1 week into low nickel diet. (no more oatmeal, banana, and beans)
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20 thoughts on “MONTH 60 [AKA 5 YEARS]

  1. A vegan diet will eventually deplete your body’s reservoir of nutrients, it may take a year to several until you figure out you’re not a cow.

    Anxiety, depression, sleep problems? Have you tried magnesium supplementation?

  2. Hi Juliana, been following your story for 3 years, thanks for continuing to provide updates. I’m 37 months into TSW and although my skin is far from perfect it is continuing to improve.

    I was wondering if you saw the news stories in Singapore about this woman, Eu Huiling, it looks like steroids destroyed her skin? Unfortunately she may be getting terrible medical advice. Is there some way we can help her? https://www.gofundme.com/helphuiling

  3. A vegan diet will eventually deplete your body’s reservoir of nutrients? Only Vitamin B12. Look at lifelong vegan athletes. Recently, in the biggest UFC fight in history, Nate Diaz brutalized Connor Mcgregor. And Nate’s diet? Vegan for over 13 years. So is Mike Tyson, Venus Williams, and a two-time ultramarathon champion Brendan Brazier. The list goes on. It might not be a diet for everyone, but it definitely doesn’t “deplete your body’s reservoir of nutrients”.

    • Unless Nate Diaz has a cows nose he doesn’t really know what vegetables his body is in need of, therefore he is either very lucky or supplements like there’s no tomorrow. Essential amino acids, fatty acids, iron, B12, fat soluble vitamins: A D E K, those are the things long term vegans MUST supplement with, not a cheap diet if you ask me…

      lifelong vegan athletes are extremely rare, and maybe veganism is fine for them, but it ainโ€™t better than meat, and it doesn’t change the fact that the majority of people cannot handle a vegan diet for more than a few years.

      • soy bean contains all the essential amino acids one needs. seeds contains a load of omega three and omega six oils, and dark leafy green vegetables has all the minerals we need. vitamin D comes mainly from the tanning our skin in the sun, if you rely on your diet to get sufficient vitamin D, you’ll need to eat a shit load of meat like no tomorrow. and these days, animals are farmed in sheltered conditions anyway, so how much vitamin D is there really in your meats? vitamin B12 isn’t that expensive, so if you think about it, the idea of a vegan diet being expensive is only a belief you subscribe to, not a fact.

        whether or not a specific diet is “better” than the other depends solely on the individual. i realize that when i have meat in my diet, it affects my digestion in a negative way. so going vegan is, in my opinion, a better diet for me.

  4. I don’t know anymore, Juliana. at 5 years through TSW u still have flares. I can understand that rebounds happen to healed ones if they go through TREMENDOUS Amount of stress. but u have had ups and downs for a long time? when was the last long period of good skin u have ? good meaning like a normal person skin
    what’s the point of all this healing and still suffer every other month!!!!
    where am I heading

    • hey sueanne, i’ve had ups and downs the past year. the last long period of good skin i had was 2013 june to 2014 october. it was normal! and in 2015, my skin was normal from august to october! short, but it was normal.

      the point of all this healing is eventually, i’ll be normal again. right now i’m still in the process of healing. i can’t go back to steroids, can i?

      stay strong ๐Ÿ™‚

      • i am thinking of going back to steroids tho.. likel, if by the time my baby is 3 and I am still not taking care of him.

        I must ask you tho, to consider Ayurveda treatment. It is doing me very well, and also helping the lady in the newspaper recently (Eu Huiling). It very possibly will help you….. do consider…..

      • i won’t make any judgements if you decide to go back to steroids. to each their own! i am on traditional chinese medicine, and i believe it has the same efficacy as ayurveda. you can try it if you like! ๐Ÿ™‚

  5. SueAnn: when you say “what’s the point of all this healing” it is as if she has other options to try.- There is no going back to steroids- this is the absolute diagnosis- Steroid Addiction leading to red skin syndrome.–She is much better than her photos in the first two years but she is the type of TSA/RSS patient who did not seem to get better in a gradual fashion with a long continuous flare. She has had long periods of good skin before and unfortunately is the type to have prolonged intermittent flares–all lesser in severity though. I am a patient of Dr Rapaports, used potent steroids head to toe on every inch of skin for 22 years. I am 4 years into withdrawal and about 70-75% better. Never had a period of normal looking skin- rather I have been in a continuous flare getting better gradually overtime–slightly different pattern than Juliana’s pattern.

    Juliana- my statement to you is more of the same as above. One thing I’d highly highly highly caution you against is trying all the “naturopathic, alternative, Chinese, etc” therapies since there is a likelihood of hidden steroids or non-disclosed steroids in the treatments or herbs. Keep the skin care basic and simple with just the use of a simple moisurizer like eucerin or Vaseline. No need for special eczema skin care lines of creams or lotions.—There is NO entity as severe eczema in adults or teens. Sever atopic dermatitis or eczema is non-existent in this age group—all are steroid addicted….you used boat loads of steroids- much was absorbed through your face.—in a previous post, you mention of an entity existing called red man syndrome or erythroderma….these terms are synonymous with steroid addiction. Erythroderma is nothing more than red skin and all the patients being labeled with “ertythroderma” caused by excerbation of underlying skin disorder ALL have been on steroids for a very very long time—none of this existed prior to 1952, when topical steroids came out…..hope you feel better soon- it’s a long road- me and my two other brothers were all “given” this condition by being misdiagnosed and mistreated for a combined total of almost 44 years.–I’m sure you get down and depressed when skin is bad, but it never fails to amaze when the skin turns around for the better. Amazing process

    • thanks azeen, you speak my mind. i know it’s a long road ahead, but thankfully i also know i’ll get better eventually. ๐Ÿ™‚ regarding chinese medicine, i’m sure mine doesn’t contain steroids. if it did, my skin will be perfect by now. ๐Ÿ˜‰ to each their own!

      i do not know enough about the history of erythroderma, i just know that if i don’t deal with my underlying eczema, it will lead to my skin turning red all over again.

  6. Hey Juliana!
    5 years!!! That’s HUGE! Congrats on being so strong for the past 5 years. You’re a champ!
    You must be immensely trong mentally – 5 years and still flaring… that’s horrible isn’t it. You are relatively young as well. Makes me wonder wtf is happening with our body.

    I’ve been well for a while now (2.5 yr TSW for me)… makes me kind of scared to see what is waiting for me, but for now I am excited that I am finally well.

    I hope healing happens soon for you! Always here if you wanna talk.

    • hey esther! yes it’s horrible on my mind that my skin is still having issues. just goes to show how my eczema can turn back into RSS if left untreated. which prompted me to live healthier for good!

      glad to know you’re doing well! just stay healthy and you’ll be fine!!!

  7. Hello, Juliana. I am from hong kong. I just start my Steriod withdrawal and read your blog here. Thank you for sharing your story with us.

  8. Hello what’s the reason for a low nickel diet? Because I am trying to be vegan and pats are something I eat on a daily basis

    • hey sarah, i was trying a low nickel diet as my hands were worsening. a blog reader told me dyshidroitic dermatitis is usually caused by nickel intolerance. And i also notice i flare after eating a lot of chocolates? and chocolates happen to be high in nickel, so i just decided to give it a try. it’s been a month, i don’t think i’m sensitive to nickel! you can give it a try for a month and see if it makes you feel better!

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