[brain fart] using steroids again?


original image from WWW. remixed by yours truly.

to roid’ or not to roid’, that’s the question.
first thing first, i know nothing about hamlet, so i’m not making any conscious reference to the story. i merely hear the quote “to be, or not to be” so many times it got stuck in my mind.

last week i was chatting with my skin friend, B.
you may recall seeing her presence as she inspired a post earlier on.

she told me she saw a lady talking about my latest flare on the facebook page.
that piqued my interest, what exactly did that lady say?

paraphrasing what B told me, the lady is discouraged seeing how i flared up at month 43, so much so that she wants to give up after having no break for 9 months.

i suppose this lady reads my blog, so this entry is for you darling.

there are some of you who followed my blog from the beginning of your TSW journey, but there were very few who actually followed MY journey from the very beginning. my blog gained momentum after my skin has gotten back to 95% normalcy, and what most of you saw is mostly me after i came out of the tunnel. if you had time, you may have read my month by month recount of the situation back then.. but i’ll assume most of you don’t.

many of you may not know that my second flare which started around month 6 (it built up its intensity really slowly and fully blossomed by month 8) lasted all the way till month 20. in fact, even after month 20, my skin was still hyper sensitive, but for the next 4 months it slowly calmed down. in that sense, i had NO break for a good 14+ months.

have i ever thought about going back on steroids during those 14 months?
NO. not once. perhaps it’s because i had so much faith in dr rap and dr fukaya.. perhaps it’s because i know that steroids is just out of the question for life because that is what caused all this drama in the first place.

will i ever apply topical steroids on myself again? to answer that question, i’ll ask myself: do i want to forgo the hundreds of days which i’ve suffered in exchange for another short-term relief, only to have to go through this shit another time?

it’s kind of like the hulk trying to count the number of days he managed to NOT turn into the hulk.

will i want to see myself documenting from month 0 again?

HELL NO. i’ve come this far, you’ve come this far, we’ve all come this far. surely, there are difficult moments. coupled with the lack of break that really wear one’s motivation paper-thin.. it’s a tough choice to make for some.

BUT NOT ME.

after reading dozens of scientific journals, having learnt the damaging effects of steroids, and knowing how the skin takes a really long time to heal, i don’t think it’s worth it to live on borrowed time for this case. it’s not like i’m 90 years old and only have 3 more months to live because i’m going to die from sort of cancer (due to years of using topical steroids which somehow led to cancer. hey, everything is possible!). there’s just no way for me to go back to topical steroids ever.

i won’t lie, i’m kind of bummed out when my skin got bad this time round (especially during the first week or so), but i soon realize it’s so strikingly different from the TSW intensity i saw 2 years ago. plus, this flare didn’t happen out of no where.

last month, my brother got into a freak accident (he’s fine now, but I’M NOT) and it really shook me inside. going through a stressful period like this has taken a toll on my health and skin and this is what this flare is about. there is a cause and effect. it could have been prevented if my body and skin was more resilient and healthy to undertake the stressful event. 

i hope that by putting this information out, it can soothe your nerve about having flares at month 43, and to have more faith in healing from TSW. in my eyes, this flare is preventable. in a parallel universe, my brother wouldn’t have called me that day crying for help, my heart wouldn’t break from hearing his terrified and helpless voice, i wouldn’t have to spend that day shuttling between hospitals in ambulances.. that little small rash on my cheek would have subsided in 2 week’s time, because that’s the normal course of event for the past 1.5 years.

i know it’s easier for me to say stuff like this because i’m blessed to be taken care of by my mom. if i have to take care of kids while nursing my TSW body, it’d be much harder – beyond my imagination kind of hard. i can only try to empathize with that lady.

but please, stay strong. you have to, if you don’t want to experience this shit all over again when you realize steroids are no longer working for you, again.

is there light at the end of the tunnel? there is, if you keep believing.

that’s all i can do for those of you who are demotivated by my recent flare. i just want to tell you guys i’m sorry for allowing this to happen to myself. if i had been more diligent in listening to my body, it may have handled this traumatic event better than it did this time round. i kind of feel like i have a responsibility to uphold right here as a TSW survivor.

ON A POSITIVE NOTE, this means that i’m on a quest to being healthier, and you can be sure to read about my adventures on that soon enough.. when the time is right.

take care and stay strong everybody!
may you be blessed with the strength and faith to keep treading on.

44 thoughts on “[brain fart] using steroids again?

  1. Am I glad to read this post!!!! And no I am not that lady your friend referred to but was also sonewhat discouraged tye same way as she did, reading your previous posts…..

    hope this current flare ends real soon for you!!!

    • i hope this entry remind you that it’s common to not have breaks for an extended period of time, and full healing takes longer than what we may expect!

      stay strong!

  2. That’s the dilemma when we keep it real on our blogs, Juliana! But I totally appreciate your honesty in showing the course of TSW. It would have been easy for you to quit blogging once you healed, but you continue to show people the TRUTH about recovery.

    Hope you get a break soon and I’m sorry to hear about your poor brother. Hope he will be OK, x

    • thanks louise, it’s comforting to see your comment.🙂 honesty is a double edged sword sometimes.. and thanks for your concern for my brother, he’s doing fine at the moment!

      xoxo

  3. Just wanted to share something i learned from the movie, Interstellar. Murphy’s Law: what may happen will eventually happen. Like our flares on any of our skins, they may always have the chance to cease tomorrow. If it hadnt happened yet, it’s only waiting for the right opportunity. We, my skin friends, shall all believe the end of the tunnel is right around the corner. It may just be there. Well, maybe i should blog this “marvelous comment” back to my blog as well.:p keep believing & stay strong, friends!

    • that’s a nice way of putting it! hehe can’t wait to watch interstellar too! we’re all waiting for that day when we’re free from all damage we’ve received..!

  4. Hi Juliana,
    Yes, it is worth stopping all the steroids and yes sometimes we will have a flare because we have to deal with a difficult situation (I had a terrible flare 4 years after my 2007 withdrawal) when my grand mother was sick with lung cancer. But at least we know that the flare comes from stress and not from the steroid and that eventually when the stress goes away we will get better again. Thanks for this additional page. Wish your brother to get better quick and I am sure that you will get better soon too. Daphne

    • thanks for the comment daphne, i hope it assures others who may be going through the same thing, or feel discouraged by my flare.

      really appreciate it!😀 stay strong! and thanks for your concern for my brother!

  5. hi juliana
    i recently healed from TSW and am considering lasik on my very dry eyes (as we all know atopic individuals are dry almost everywhere – eyes, skin, etc.). however, part of the necessary lasik after-care includes steroid eyedrops – prednisolone to be exact. do you reckon it will trigger steroid dependency? the lady at the clinic did say i can try pressing the side of my eyes when dripping the eyedrops such that the eyedrops won’t enter my respiratory tracts. i remain sceptical though…

    • hey hueysun, i think steroid drops for your eyes for a short period of time would be fine. systemic steroids and topical steroids act differently, we’re healing from the steroid damage to our skin most of the time.. so.. i think you can just get it done and don’t worry too much over it!

      • thanks for your advice juliana!! shall consider it🙂

        just wondering, do u suffer from dry eyes? I dont think so right!!

      • you’re most welcome🙂 as for dry eyes, my eyes seem to be ok on a normal basis. if i wear contact lens, it does feel drier than usual. if you have dry eyes, you may wanna make sure it’s not some autoimmune disorder (Sjögren’s syndrome where immune system attack the glands)

    • Oh dear…if your eyes are already dry, LASIK makes them drier, whether or not you ever went through TSW. I was denied LASIK by two clinics because my eyes were too dry. I ended up getting a different procedure called Visian ICL, which does not exacerbate dry eyes like LASIK. My older brother got PRK 10 years ago, and still has dry eye to this day.

      P.S. After my ICL procedure, I used steroid drops for 2 weeks, and my skin was fine.

      • Never heard before of Visian ICL!! Shall do some research on it.

        Yeah! I heard horror stories whereby people who did lasik hav to drip eyedrops everyday for the rest of their lives…

  6. Juliana is spot on. After 35 months of tsw, the first 2.5 years where a living hell, it was rough however there were breaks and calm periods. TSW is non-static condition, the skin is always changing. I am glad i stuck fat and never gave up. I am not healed however my ability to function like a normal human being has vastly vastly improved and my skins integrity has slowly slowly improved. Stay strong people its a marathon but i believe it was worth it.

  7. Hi Juliana, I saw the post that your friend B mentioned and I can relate as I am still recovering from a bad flare (end of 11th mth now). I read all your posts during my early months and would really like to thank you for being so inspirational. You have given me the courage and encouragement to continue the TSW journey. May our skin be back to normal soon!🙂

  8. Dearest juliana,
    This time round,I think God has tested you again and if you pass this tough part of your life, nothing will hurt you.
    I believe you can do it !!! , 3 years of believe make everything so much better.l this too shall pass. Wishing your heart to be strong and your mind to be recovered soon!!! Be recognised, you are so inspriration and all journal are very sincerely and cheer my life up. Want let you know, everytime when my emotion a huge down, I come here to this page and back with a heartfull. Dont give up. You will pass this matter.

    Way to go girl!
    Big love
    Moe

    • thank you so much moe🙂 you’re right, god is putting me to another test, and i believe i can come out of it just fine. i just have to persevere and keep believing.

      thank you for your sweet sweet comment. it’s just what i need as i feel a little slump the past week. *hugs*

      good luck and stay strong!

  9. Hi Juliana,

    I’m really impressed by your resilience and it really motivates me too!🙂 I’ve been off steroids for almost four months now. I haven’t really had any serious withdrawal systems yet (when did they start for you, do they start straight away?) but occasionally my skin will get red and dry in parts, and get very itchy. My skin on my face at the moment is at its worst for a while, right now it feels tight, scaly and dry over my face. So I am feeling quite demotivated, naturally, but like you, steroids are just out of the question. I guess these moments of flaring draws one’s attention to the fact that something in the body isn’t right, and they work as a reminder to take care of yourself – whether it’s eating right, de-stressing, doing more exercise🙂
    I really do applaud you for showing the reality of how life is with eczema. It’s really brave. I’m glad your brother is fine, and I’m sorry that whatever incident happened happened, and that it had a domino effect on you. Stay strong!

    Carrie

    • hello carrie, i’m glad to be able to motivate you.

      my withdrawal symptoms start even before i fully stopped steroids. they creep up really slowly over a month or so, and continue to worsen over the months. i know there are people who flare immediately, but i guess everyone is a little different.

      and i agree whole heartedly with you – symptoms on the skin just serve as a sign to warn us that something isn’t quite right inside our body.

      thanks for your lovely comment!🙂 much appreciated!

      xoxo

  10. Hi Juliana, just wanted to share with you that I am on my fourth day of drinking turmeric tea (turmeric powder which I boil with a bit of fenugreek for better taste) and it has a great effect. My skin feels really really good. I have also bit eating a lot lighter to help my liver. Look into turmeric. I didn’t use it as much in the past. I drink 3 to 6 cups a day and I think that it really really helps.

      • HI Amanda, I didn’t manage to find Organic Turmeric powder at the beginning, so for the first week, used what I had. Then found some. It has been now over 10 days since I drink it and the infections that I had due to eczema are gone and my skin is healing faster than before. I just found some fresh curcuma. So what I did was take 4 cups of water for one tea spoon of turmeric powder and boiled it for 5 mm. For the curcuma root, took two one inch pieces and boiled it for 5 to 8 mm. You can add fenugreek seeds or Cinnamon bark to it to make it tastier. I drink it 2 to 3 times a day, but also drink a lot of water not to be dehydrated.

  11. hi juliana
    i’m your big fan from Taiwan
    i find your blog because your chinese post
    at that time i also just started my TSW journey~
    i’ve learned a lot and been given a lot of courage from your post
    i thank you sooooo much

    at first,my flare happened very badly on my face and arm
    5 month later
    they are totally recovered, but now there are some little “circle” on my hands

    i’m really grateful for the information you shared
    people need to know about information about “TSW”
    there are so many people still don’t know the “TSW” before they choose using TS on their skin
    “TSW” is soooo terrible~
    you can cure your eczema by changing your diet or using other ways~

    you are totally awesome and super brave
    hope you recover very soon~
    sent you so much love and blessing
    i know GOD must help you to get rid of “TSW” FORVER!!!

    p.s i’m not good at writing in english,i’m soooory

    • hi andy, i think your english is great! if you want to type to me in chinese, you can do that too😀 我的華文程度還算ok!

      i’m so glad your skin has improved within 5 months! i hope mine will resolve soon too! i’ve made changed in my diet, i’m trying to observe myself and see how i can help my body😀

      thank you so much for your comment🙂 do spread the work about TSW to more taiwanese, i know topical steroids are widely used by innocent people around the world.

      good luck!

  12. UGH LOVE I AM SO FRUSTRATED FOR YOU.
    but good on you for staying strong! You know your body better than anybody else and the things that they are capable of! I am currently doing pretty well, 16 months in. I read comments on your other post and saw bunch of people recommended bunch of things…. and I’m sorry but I’m going to recommend one more stuff.

    If you have a sulfur hot springs available, go check it out. My body which I’m not sure is TSW or eczema ate it up. Something changed in my skin and the skin barrier was up and it was moisturized.

    Hope you feel better Juliana. If you ever need anything, let me know!

    ps you’re still hot❤

    • *hugs* thank you esther🙂 you’re so sweet!

      there might be something about sulphur and eczema, because when i was younger, my family always told me to get into the japanese hot springs that’re rich in sulphur as they have been known to cure skin diseases. well.. “cure”, as in getting rid of most symptoms. i wonder if we have sulphur rich hot springs in singapore..

      please continue to soak in that sulphur spring, wishing you a speedy healing from here!!!

      and thanks for offering yourself to me❤ really appreciate it.

      xoxo

  13. Its like small strands of fiber, which actually forms to be a scab or something i don’t know, but it usually forms to cover open wounds on my swollen fingers. It’s pretty strange!

    • i think it may be a strand of fibre from your surrounding (like your clothes, bedding, whatnots) that got stuck to your slightly wet wound. the fibrin strands that i studied do not form visible strands out of our body.

  14. Thank you so much for this post Juliana! It’s a good point of reference when I have been asked this question by some. For me, the answer is so simple and sometimes it’s hard for me to explain to others because it seems so glaringly obvious to me.

    I will happily flare every few months for the rest of my life than go back on the steroids. And I mean that. There is NOTHING that could make me apply that poison to my skin again! Steroids affected so much more than my skin, they affected EVERYTHING – my mental well being, my menstrual cycle, my hormones, my sinuses, my asthma, my bones…just, everything.
    I am so much healthier now!

    So thank you, you’ve explained it beautifully here, as always🙂

    Sarah (www.thethickskin.blogspot.com)
    x

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