MONTH 51

TSW month 51

the natural healing journey is full of surprises. just when i think i couldn’t make it for my best friend’s wedding, inflammation says it’s ready to take a day off to let me enjoy myself on her special day. couldn’t be more thankful for that, and this shall be the highlight of the month for me.

click to see photos below, beneath my mountain of words.

26 june 2015

skin’s going through the usual up and downs. my face is showing the most obvious signs of healing as it’s more calm than my body. on my fingers, i also notice a gradual improvement. previously oozing cuticle area aren’t oozing anymore, and the skin there is more resilient too.

if i can label the state of shedding, i’d say my body is going through a surface shed (as compared to a deep shedding which will involve oozing wounds). the skin underneath is still abnormal though – shiny and red, but not oozing. the skin that falls off parts of my body is thick and scaly.

my face isn’t red or pink anymore, except for a few spots of pink spots. it still dries and shed once every few days, but the skin are thin skin flakes that seems much more normal in comparison. the area above my lips still cycles in and out of a pink rash. my neck changes skin every few days, and it appears to be more red than my face.

scalp is still dry. been having problem sleeping this past weeks, i think it’s related to my hormones.

previously oozing wound on my palm and sole is showing signs of improvements. some days it’ll still itch and is raised, but most of the time it’s flattened. the skin that used to shed from those spots aren’t as thick anymore. while i still observe some vesicles underneath my skin, their size has shrunk greatly.

currently my biggest concern are my hands and body. from experience, they took a much longer time as compared to my face to recover for some reasons unknown to me.

all in all, i feel quite good about my progress and is hopeful 🙂 in retrospect, i realize how much emotional fluctuations i experienced last month. i guess it must have been related to the flare last month! after all, everything is inter connected in our body.

currently, my body is rough, scaly, the way it usually is during the shedding process. i can’t wait for the shedding to be done so i can have smoother skin again. for some reason, i know i should avoid wheat products but.. when hunger strikes in the morning, i just let myself go.

sometimes i think, since my skin is already bad, it doesn’t matter if it gets worse. =_= it’s about time i remind myself how i usually feel more discomfort hours after i eat cake.

7 july 2015

after a relatively better week, my skin is getting more irritated again. i notice my sleep usually gets disrupted when my skin looked better. perhaps, when it looks better on the outside, it doesn’t necessarily means my insides are better.

whatever it is, it’s much better than it was 3 months ago. while my skin is much calmer, it’s definitely not normal yet. my body is still blotchy at pink. no wonder it itches where ever i scratch! :/

my sleep has been interrupted these days, waking at least once throughout the night. usually it’s 4am, or 6am. while i’m thankful i don’t feel lethargic throughout my day, i notice bouts of mood swings occurring on a regular basis. it’s that sudden feeling of doom that stemmed from no where. it’s odd because i was feeling completely at ease for weeks and suddenly i notice a little anxiety.

perhaps it’s the lows after the highs. just part of the healing cycle!

11 july 2015

another month down, but it’s a promising month because the good days are lengthening while the down time shortens.

i feel like i’m back in month 21, the condition of my skin is very similar to my healing back then.

my face is the most calm, the skin feels thin but smooth, it’s actually fair in colour.
neck down it’s obviously still having its own cycles, cycling between pink skin and dry skin.
my arms are a little blotchy, it’s no longer the red sleeve! my elbow fold is particularly rough.
my legs have improved a lot in the past month. they were red, dry and really irritated all over, but by now it’s no longer red and that swollen. it still feel kind of tight at times, but it’s not really edema.
skin is generally dry, but not super dry dry. it’s more obvious if i’m in an air conditioned environment. my scalp is still dry after 4 months. lots of dead skin that refuse to fall off my scalp. not sure if i should call them dandruff. :/

i’m healing and still healing. i think i’ll be able to travel in 2 months or so!

my sleep is much better, but i still wake up in the middle of the night.
sometimes i stay awake for an hour or 2. if i’m lucky, i fall back asleep to continue my dream.

i’m low on energy though. if i do strain myself by going out the entire day,
i’ll probably need to rest at home for the next 2-3 days to recover my energy.
the lethargic feeling is so foreign, i hope it doesn’t stay.

as far as weird body ache goes,
i’m dealing with lower back pain this time.
i remember i had a case of self diagnosed sciatica years ago when i was actually going through TSW.
i guess this will go away in time to come, but i’ll practice some yoga stretches in the mean time.
i’m actually going to try acupuncture for my back some time soon.
all these while it’s been for my skin, so i’m quite excited to try something new.

the other day when i was doing my weekly acupuncture treatment,
a lady saw the needles on my leg and asked if i’m getting poked to treat numbness in my leg.
i bet you all are just as confused as she is, thinking “what has the skin got to do with the leg?”.

acupuncture eczema

this is why i love TCM. it never fails to surprise people 😛
the doctor focused on my legs because certain acupuncture points that helps nourish the blood (which will in turn nourish the skin, since blood is the courier in our body) are found along the meridians located on our legs.

i enjoy every session because i’m always learning from my doctor.
he tends to my emotional well being (by being assuring and understanding) as well as my physical well being, and that’s what a true doctor should be doing.

one of the reasons why i didn’t go back to my previous TCM doctor was because he was unwilling to share knowledge with me.
i get the feeling that he’s trying to profit off his “proprietary medication” instead of truly wanting to help people in need.
i understand that everyone needs to make a living, and it’s not that i’m unwilling to pay for my health.
it’s just his attitude that didn’t vibe with me.

but my current doctor really makes me feel like he has the patient’s well being at heart.
it’s so rare these days.

i have more than a thousand photos to sort through,
i need to choose which to show you guys because showing all is not an option.
also, the daily changes are hardly noticeable through photo.
the thought of sorting those photos is quite daunting.

but i’ll get them done soon, so you guys can see the progress of my recovery over the past few months.

one last thing before i go,
i know some of you are still thinking that what i had is a TSW flare.
to be honest, my thoughts of what i’m having constantly changes.
but after so long, i have come to accept this explanation that i thought up: it’s an eczematic flare that looked way more serious than normal eczema because my skin was steroid damaged (and probably has a memory!?).

i still do not classify it as TSW because i do not believe it’s possible for a body to withdraw from a drug i stopped using 4 years ago.

of course i may be wrong. i’m just sharing my current hypothesis.
there are a thousand and one explanation for every event, but only one is right and you will never know if yours is actually correct or not.
hence the word “hypothesis”.

looking forward to the healing i’ll see in time to come.

stay mighty strong all my fellow skin friends 🙂 throwing in a comparison photo to cheer you all on.

topical steroid withdrawal before after eczema

granted, i had some makeup on in the photo on the right to even out my skin tone as it was still a little blotchy on my face, especially after i shower in the morning. but symbolically, this is where i will look like for good in time to come.

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28 thoughts on “MONTH 51

  1. Hey Juliana, so happy to hear about your progress 🙂
    Was wondering whether, during a flare, if you still go out like you normally do? Do you get strange stares and judgement from people?

    • thank you selina! 🙂 i try not to go out when my skin was really bad. when i had to, i wear a mask, i didn’t notice too many people staring. if i ever feel like they are judgemental, i try to think of them empathizing for me instead of judging me.

    • hang in there louise!! i high recommend you to look into ways to improve your underlying eczema. i feel like we’re prone to a very bad flare if our eczema worsens.

  2. You are looking so much better!
    Have you ever heard of coffee enemas? I heard its good for eliminating toxins. I think the skin gets red and scaly (eczema) because it is trying to detox through the skin!

    Good luck to your journey of getting better skin, you can do it! Mine isn’t as bad as yours but you are a motivation to me 🙂

    • yes i am! thank god! i believe i have heard of coffee enema, but it’s not something i ever thought of trying.. but you’re right about our body trying to get rid of toxins through our skin!

  3. I continue to be amazed at how positive you are Juliana – despite everything. You are such an exceptional role model. My own 18 year old son has been doing his gap year in New Zealand shortly after starting TSW. Maybe this is mad but he has coped (just about) although 13,000 miles away from home. It sucks (that wasn’t a word I used when I was growing up but it sums it up) because he has been going through this all on his own. Currently he has eczema pompholyx which I had never heard about before, plus a staphyllococcus infection as a result of scratching whilst asleep and, as if that wasn’t enough, discovered he had had shingles for about a month. He’s coming home next week and I can’t wait. All you young people who suffer from eczema and related conditions, and are trying to get through life and live a ‘normal life’ – whatever that is – have my highest respect. Don’t let this stop you doing the things you want to do in life. Stay strong and the healing will come.

    • Hi Jenny, I too suffer with Eczema Pompholyx & find it gets much worse if I get mega stressed out & over heated, not easy in the summer months. Magnesium paste helped with the ones on the soles of my feet, as it feels like you are walking on bubbles of pain! – My family do not understand just how painful this condition is. Sorry about your shingles, I guess when your immune system is down other nasty conditions creep in.
      My own son who is 19 is going through TSW as well & it is so horrible to see him suffering, it has been about 8 months now & the days I see him happy are few & far between, have told him to read this Blog site as it will give him hope – it gives me hope, good luck everyone. x

      • Hi Perri, So sorry to hear that. I find people who don’t suffer from a skin condition largely lacking in understanding. I want them to get all excited about TSW and bang the drum for more research in this area etc but it doesn’t have the same pull-on-the-heart-strings as cancer, even though the symptoms and the struggle to deal with eczema and related conditions is every bit as challenging (I should know as I have had cancer) – indeed I have cried in frustration and despair at my son’s suffering which in my admittedly biased view was far far worse than anything I had ever suffered. We should perhaps put our sons in contact with each other for a bit of mutual support. Mine is currently heading home and is 36000 feet in the air somewhere above the Asian sub-continent. He sent a message when in Melbourne on a stop-over to say he was feeling pretty rough, but telling himself that he is healthy and will be healthy once again, one day. He arrives in Glasgow tomorrow. He’s my hero. I’m sure your son is the same. Keep your spirits up!! x

    • thank you jenny! being through the worst has helped me stay positive now that things aren’t as bad! your son is so strong! i wouldn’t be able to do TSW alone!! i’m glad he is on his way home, where he can be taken care of! i wish for you to stay strong to lend him your support during this period of time. he is truly lucky to have you as his mother because family support makes TSW a little easier to cope with.

  4. Hello! I, too, have been using TCM while in withdrawal. I’ve had a few acupuncture treatments as well as 15 months of herbs (they come in packets that have brown pellets). I’m interested in what type of TCM treatments your doctor suggests and more insight on your knowledge of TCM and how it’s helped you.

    Lastly, thank you for all you have done for our community! I always look forward to reading your posts. Your posts are always so informative and I really appreciate your humor 🙂

    • hey jenn! hahaha we’re on the same frequency when it comes to humour i guess! good for you! 😀

      my doctor and i work together to decide on what herbs i take. i do my research and propose them to him and let him decide if it’s suitable for my body. how is TCM working for you?

      reading widely about TCM gives me a better idea of how i would want to live my life. it redefined my health goals, and i believe this is the way to keep my eczema at bay for good.

      • Well, it was my TCM doctor who told me to stop steroids. I went along with what he suggested and completely stopped. My skin wasn’t itchy or dry for the first 3-4 months (I was wearing shorts and flip-flops for the first few months!). At first, my TCM doctor said, “Your eczema isn’t that bad!” I think he spoke too soon.

        I did have edema in the first few months. Also during this time, I thought my eczema was caused from allergens … mainly my dog! I thought my dog was causing the swelling in my face and my sneezing/runny nose (this was everyday!) … I thought my allergies were THAT bad! I vacuumed everyday (before my skin was flaking) and bought an air purifier. NOPE, that did not help 😦

        My TCM doctor said the herbs I was taking is supposed to detox my body. He said the steroids/toxins were leaving through my skin and would get worse before it gets better. I go to my doctor every week for new herbs. He looks at the condition of my skin and gives me herbs based on how it is that week. The last set of herbs were prescribed to “clean” my blood. The brown liquid herbs (I heat it up and drink it like tea) are supposed to help make my skin less dry. He also says I need to stay away from things that will make my body “hot” – chicken, spicy food, ginger, alcohol … and also … s-e-x!

        I ultimately think that my TSW symptoms could have been WORSE if I wasn’t taking herbs (now taking 2 kinds – pellets and a brown liquid). I completed grad school (1 year program) with few absences … but I did have real nasty, crusty skin on my face … I managed to cover the rest up with long sleeves and pants in hot LA weather. However, I’ve been flaring nonstop from month 5 (currently in month 15). SUPER DRY! SUPER ITCHY!

        Overall, I’m hoping it’s the TCM that helped contribute to a somewhat functioning life. I think others with similar usage history have gone through more troublesome times. I am thankful that my TCM doctor suggested getting off topical steroids. If he didn’t suggest it, I’d still be using it today!

        Side note: I’ve been a pretty moderate to heavy user of steroid creams/foams/oils and even shampoo (10 years).

        Thank you again, Juliana! I always look forward to reading your blog. I can’t thank you enough for all you’ve done for us :’)

      • hey jenn! so glad your TCM doctor guided you towards the right path! perhaps it took your body several months to gain the energy to start the “detox” process. it’s hard to pin point the right reason because everything happens for so many possibilities!

        i do believe however, that the oozy and crusty stages were necessary as that is indeed the body trying to detox through the skin. once it’s over, you should see a lot of improvements!

        i’m really happy to be able to do something for you and everyone else just by sharing my own experience 🙂 stay strong and good luck!

  5. Hi Jenny
    Your son is indeed very brave for tackling it on his own – My son has also joined a Facebook support page – ‎Eczema & Topical Steroid Withdrawal-Red Skin Syndrome Support Group – Lots of tips & support from people worldwide – He said it has helped him to not feel alone & chat to others going through the same thing.
    It sounds like your son is being very strong. My son Jamie will not even use any moisturizing creams for fear of aggravating his inflamed, delicate skin & is wary of attending any doctors in case they tell him to take more steroid tablets or creams.
    His girl friend has been very supportive, as have his close friends. He does get annoyed by horrible remarks from people, especially about his face, but in time he will heal.
    Enjoy your meeting with your son – you must be so excited 🙂
    Will show Jamie this link & see if he would be interested in contacting your son, as they are similar ages too.
    Keep your spirits up too!! 🙂 x

  6. Hi Juliana,

    I have eczema for 18 years (whole body)and now in month 19 of tsw,
    I have recently noticed even tho I am almost 70% heal but when I have my period, my skin started to get worse again, especially my face, its like a little flare up for almost 2 weeks every month!! ( as it usually takes around a week to recover after the mini flare). So I am wondering if you experience the same? and what would you do to prevent it ? or do you have a special diet during your period?

    Thanks so much !!:)

    PS: I am also from HK ^^

    • hello miche!

      it seems to be a common trait among ladies to have our skin worsen during or before our period. :/ i did experience something similar, but the magnitude of the worsening has decreased over the months for me. i don’t know if you can prevent it per se, but you might be able to reduce it by nourishing your liver system (in terms of TCM). you’re from HK, i wonder if you’re still in HK now? if you are, you can easily see a TCM doctor and enquire about herbs that will nourish the liver yin. it might help 🙂

  7. Hi Julianna,
    I think its amazing how much you have persevered through all of this. The agony of the unpredictable, and feeling of being so alone in this whole process.. Just living it by the day, hoping for better days to come! For you it seems to clear up pretty fast, I see that you apply make with no harm 3 months later after the flare. Getting rebounds on the face is the worst part, do you find that your double eyelids is struggling to come back to its normal state? It seems like its overwhelmed by this whole flare & deflare repetition it started to lose elasticity and seems to have lost its track in recovery. Sometimes they are triple eye lids.. And throught out this whole tsw, it seemed to have lost its volume and became fine double eyelid wrinkles.. I dont want to sound obssesive over eyelids, but it was one of the first worries I had after starting tsw- since eyelids are the weakest part of skin and its prone to change. As a female… It used to be the most confident part of my face…so it depresses me… 😦
    Ive been off of moisturisers at least 80% thru my tsw of 1.5 years, but im starting to want to start applying a little bit of organic eye cream or oil to keep it moist and plumpy. After the start of tsw many ppl said I look like ive lost weight but really ive gained weight and they have judging me by my face because my skin had lost its turgid baby fat volume due to ecxessive detoxing (sports, sweat, sun, no moisturizer, vegan diet and so on..) I hope i return to my original state.. Well, according to tcm theory of tsw, after detoxing you are supposed to have much better skin than before like a childs almost.

    Well, isnt that too much to ask for 😉 steroids have already given people the amazing white clean soft skin i guess their expectations are high.

    Sorry this message became lengthy but it seems that you would know the many transformations the facial skin goes through. And i thought ask.. “Julianna!”

    😉 thanks for reading

    • hi there! thanks for thinking of me when you’re feeling confused! haha!

      let me reply you point by point.

      “For you it seems to clear up pretty fast, I see that you apply make with no harm 3 months later after the flare. ”
      the only reason why my current flares are much shorter than those i had in the past is because i believe mine are eczematic flares that stemmed from my underlying eczema (instead of TSW).

      ” do you find that your double eyelids is struggling to come back to its normal state? “
      no i do not feel that my eyes are struggling to come back to its normal state. they currently look the way they did in the past.

      “I dont want to sound obssesive over eyelids, but it was one of the first worries I had after starting tsw”
      my advise would be to look beyond your eyelids because things could have been a lot worse. don’t focus on the bad stuff.

      if you’re so concered about the loss of baby fat, there is always the option of fat grafting, so all hope is not lost. in the mean time, it’d be best to focus on recovering your health and mind. 😉

      good luck.

  8. Hi Juliana,

    just stumbled upon your blog and I find it so inspiring! its so nice to see how you have healed, its so encouraging! I’m about 1.5 year into TSW and these days its getting worse…I cant stand looking into the mirror and so afraid of going outside…my face and neck is red, swollen and itchy! when you were going through that phase, did you put any oil or lotion on your face and neck? I realize when I put anything on it, it makes it more itchy, but when I dont, it feels so tight….so im not sure what to do about it! any advice will be appreciated

    thanks
    Shirley

    • thanks shirley!

      i listen to my skin to decide whether or not should i apply any oils. if it’s irritated after i apply, i’ll avoid any oils or creams for a while. the tightness is something that is less irritating than the itch and burning sensations. i’d ask you to listen to your body too!

  9. 你好,我本來都用同食左類固醇大約3å¹´,但最近有報紙話芫茜水可以醫到所以停左用TS 大約10日,今日第11日,我而家既情況都好差,今日睇完髷生,同左個醫生講TSW有可能醫到,之後佢話可以試下,就轉開D抗敏感藥比我(不含類固醇)。但我呢幾日訓得好痛苦,完全痕到訓唔到教….?想問係咪正常??仲有呢,其實而家都差到唔想出街,怕嚇親人,但我9月又要開學(今年第1å¹´ASSO,好驚到時皮膚好差識唔到人,因為都係第1年轉哂同學,怕D人見到自己咁都會驚/避忌),想問埋你TSW果段期間有冇試過出唔到街??大約嚴重左幾耐..?仲有仲有你TSW果陣有冇睇其他醫生/食其他藥之類果D??我都係近日係Itsan搵到你的..因為Itsan真係比較少華人…THX ..

    • 你好,
      一開始反彈的時候睡眠品質會很低, 是正常的.
      我試過皮膚差還繼續上學, 但是也有嘗試呆在家不出門一年.
      我嚴重了一年多.
      我是TSW已經20個月后才看中醫的, 靠中藥調理身體.

      類固醇反彈的時候是身體在”排毒”, 該排的還是要排, 盡量順其自然, 能睡就多睡一會兒吧.
      身體自己會康復的.

  10. Hi Juliana,

    I stumbled upon your blog quite accidentally while googling about TSW. I am currently pregnant at 22 weeks and my flare ups are pretty bad. It has been 2 weeks and steroid cream doesn’t help AT ALL. That is when I decided to go cold turkey on steroid cream and start with natural products. It has been really bad with the eczema spreading all over my body. It used to be bad on the hands and thighs only, but now every body part is affected. I thank God that my face is not affected with large coin-sized eczema like the last flare up.

    I am very inspired to go thru TSW all the way so that I can stop depending on something that is harmful to me and the baby. But being pregnant, with the hormones and stuff it is really hard to cope. Sometimes I’m positive, sometimes I feel so ashamed of my body, sometimes I dunno why I decided to go thru this painful TSW. It only been a week since I stopped the steroid cream and my skin is oozing and oozing and oozing and also feels tight. I would love to know how bad is it when you first started. Maybe I will get inspired from it. Thanks in advance. 🙂

    • hi nana,

      i can’t imagine how i can deal with TSW when i’m pregnant. i don’t even know if that’s the right thing to do during pregnancy, i would suggest you consult a gynae or whichever doctor is specialized in foetal development. your mood will affect the development of the baby and his/her temperament. i’d rather you using steroids for another 10 more months and then go on your TSW journey after your baby is safely delivered. but then again i’m not a doctor.

      https://antisteroid.wordpress.com/photos/

      this link shows you how my skin looked when i first stopped steroids.

  11. So inspired and encouraged by your post. Im 11days in and i really want to give in..How much longer Errgh. I have e kids to raise at the same which makes it that more stressful aspecially when im having a bad day. I look.forwzrd to your updates.

    • hello! I’m sorry to hear you have to take care of 3 kids while battling TSW!!! i hope you have plenty of support from your family because it will be very tough on you! I hope to update about my skin once I feel comfortable enough to process all the photos I’ve taken over the past year. it’s horrifying to look at and I haven’t summon that much courage yet. you stay strong, for your family and for yourself! better days are ahead.

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