Month 4 – Day 103

Nearly hitting 15 weeks of topical steroid withdrawal (TSW). It’s been a bit of a emotional roller coaster ride for me lately. Ups and downs with my “eczema”. You see from the photos below. I’ve just been too depressed to blog really. I try to keep my blog posts positive so when I'm not blogging I'm at a low point in my TSW journey.

Anyways, a bit of an update of my hell TSW journey…

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As I thought things were gonna get better…. redness adn ooze starts non-stop from one of these days….
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Started to flare more around chest but neck is actually getting a lil better compared to before
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A day where a wanted to kill myself with the amount of ooze i had all night………IMG_7528a


Things started to dried up a bit and crust and i couldn’t help but pick some of the crust hence my raw skin popping up
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13 Oct – DAY 89
Just want to sleep all day stay in bed all day n do nothing. I'm even lazy to go out to eat n drink. I just cbf anymore. But I can't. I gotta wake up every morning around 630 to look after my boys. This whole TSW is really interfering with my daily life. I'm struggling so hard to stay positive but I'm just fucken depressed and want to stay in my depression n do jack all. But I can't. I guess in a way it's good. My boys do keep me motivated in some way when I see them so adorable. But when I really need rest n I can't get it. I just lose my cool. I'm lethargic all the time. I'm sweating at night n get itchy and soaked. My face is just constantly weeping, crusting, flaking then weeping all over again. I just get so angry at myself. Wtf did I put those nasty steroids on my face?!!!! I didn't respect my body and now this is the payoff. Husband is getting fed up looking after boys. I just feel like moving to mums with the boys so he can just have his life back. I really want to just leave this house but I can't. I just want to disappear from his world now so he can get relief.

Tried very hard not to pick so raw skin is healing

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15 Oct – DAY 91
I took 5htp yesterday n it was good I had a few hours of sleep but woke up wet with ooze and sweat sigh. I had to change 2 tops thru the night. My arm pits r also very sore - swollen lymph nodes and oozing n sweating ughh. Think it's a flare? I dunno I really had no break from all this torture but at one point my
skin was dry n not oozing lots so... Sigh.


16 Oct – DAY 92
Just got back from Roots of Empathy prog with my bub. The kids loved baby it's so nice to see that but baby wasn't too excited just very curious n looking around lol. They completely molested baby puhahaha. Anyways I told the kids and prog facilitator before hand about my TSW and they were very understanding and respectful. At the end of the session the prog facilitator actually asked if he can pray for me. I was so touched I said yes. And I nearly cried as he was praying. How sweet and caring. Thank you so much for your prayer and blessing! Later I went to the drs to get my monthly vaccine. The nurse there (a diff one from last time but I really like this nurse the best in general) she was very concerned about me, haha, she asked if my GP had seen me like this n if he gave me antibiotics. I explained a bit about TSW but she seemed a bit 'hmmm ok' about it, haha, I then said its hard for drs n others to believe in the TSW cos really no one can help in terms of speeding up recovery only time will and drs n medical ppl find it just hard to believe. Oh I just can't fucken wait to show her before n after photos. When my face is all pretty I will just pay for a consultation and talk about TSW and persuade them to believe TSW and me!! I'm am the living proof by then!


18 Oct – DAY 94
I gave baby to mum yesterday for a day and went out with my cuz Kat to the Chinese herbalist and to her Buddhist org to chant. We also had Malaysian lunch in between. It was windy and cold and my face hurt but
it was nice to be out. I was very tired tho. I didn't even have time to nap in the afternoon as I has washing to do and medicine to boil. Sigh. And insomnia again last night. Night sweats  again. Aiiiii

Trying to stay positive….

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Legs ok. Thighs starting to flare a bit more not much redness. Kinda comes and goes. Arms have actually turned worse from sweat rashes and it actually looks like my chest now. I just cbf taking a photo sorry.

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19 Oct – DAY 95
Oh I have such a Bodhisattva cousin - Kat. She came to help me clean my house yesterday! She cleaned my kitchen n reorganised my pantry! I'm so lucky to have her in my life! She really understands what I'm going thru n helps. Man, cleaning... Only my mum would do this kind of stuff what kind of family/friend would help like this? I'm so so so lucky! They other day we went to her org to chant. She wrote a letter to her leader in Japan and asked him to chant for me. As she was writing her letter I started weeping and thinking: I must heal for these people who love me so much. I must give my love back to them deeply. I have also decided to contact the media when I'm healed or nearly healed to get them to interview me about my condition and
spread the word about TSW. I hope I can do some positive causes like this. I wanted to do it when i’m nearly healed as  I will be showing the the proof by then. I feel like going to the media now doesn’t provide much evidence as i know a lot are still sceptical about the full healing of ‘not doing anything’ during TSW. Got a heavy headache. Think it's lack of sleep. Took 2 (natural) sleeping pills last night so maybe why? Hmmm. Skin is ok not weeping as much but still itchy n face is all dry with bloody scabs healing up
I just have to be careful not to wound it again. I'm feeling ok today I had breakfast with my family n feeling tired but positive n ok about staying in lounge n not just wanting to stay in bed all day type. Maybe it's the 5htp I've taken. So maybe I actually need a higher dosage like 2 pills I took last night. See how again tonight.


22 Oct – DAY 98
Ok same shit happening. I dunno if I’ll start to ooze all over again. God so sick of this. But I gotta get through it!!! FUCK YOU TSW u will not WIN!!!! But there is some new skin coming up on my face like around me  nose and side of jaw and chin. So it's sloooooooooowly getting there i guess......

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Sorry guys, not the best ‘positive’ post from me. As you can see it’s been pretty rough for me and i am in ‘can’t be fucked’ mode. I'm trying hard to stay positive. I’m gonna do some cleaning around the house to get myself distracted and feel better afterwards. Hope I don’t sweat like crazy.

Hope all is doing good! I’m hearing positive stories out there keep going TSW warriors!!! xxx

-ahfaye-

Thank you for reading this post. I wish you great health, happiness and success in everything you do!

35 comments:

  1. Stay strong faye.
    My face is messed too.
    So lets try to pray for each other and get thru this togrther. Tsw will not beat us.

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    1. Thanks Lisa! The face is the hardest to 'face' I think. Yes we def will get thru this, TSW won't win for sure, we will prove it in a matter of time! Hey r u blogging at the moment?

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    2. Hi hi faye,
      I'm not blogging at the moment but i an recording my progress which i will post soon no time right now since i still working. Maybe not soon. Let's get thrust this because yes the face is the hardest to face. I would gladly have tsw all over body than face. But can't change that now. Sighhhhh

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    3. hey Lisa, it's good to keep record, doesn't really matter if you blog or not it's really tracking down your healing and it will be very worth it at the end of the journey when you look back. yeah people just think i'm very badly burnt aye haha oh wells. we will get there. hope working isn't too hard for you at the moment it's sux big time you can't get the rest you want. i'm holding your hand, we will walk down the healing road together! xxx

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    4. Ah Faye
      I wanna hold your hand too
      If you need someone to vent or just to chat, her is my email
      Lisaleung1102@gmail
      Or if you have line, the free chat thingy i can do that too.
      I understand if your to busy to chat to with kiddos and all. I'm get for you since i know how lonely it can bee when people doubt you out you feel hopeless

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    5. thank you Lisa let's chat soon! my 2 yr old had a fever yesterday n had to take him home from daycare earlier and looking after 2 bubs was not the best thing to do during TSW haha oh well i survived yesterday so hopefully today will be ok. thinking of u xxx

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  2. Stay strong!

    Can't wait to see you healed. I think the before and after will be one of the most remarkable ever!

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    1. Thanks eugene I can't wait too! I look like such a freak now! Gezz Halloween coming up no need to put on make up LOL hope I dont freak out the kids when they door knock! :P hope u're getting better everyday xxx

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  3. ah faye! i feel so bad for you, the least i can do is to say a prayer for you to stay strong.. for yourself and for your boys!

    i know you feel like shit all the time, even like a burden to your family. but it really do you no good to think that way! plus, what are families for? for you to depend on when you need them! i'm very sure you would do the same for your loved ones if they were the one in your shoes, right?

    allow yourself to be sad, but promise yourself that you'll feel better after that. ;)

    stay strong!!! *hugs*

    - juliana

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    1. thank you so much Juliana for your support! it's hard, it took me a month or two to accept the fact that i just can't function some days and need to depend on my family, i'm more open to help now. just used to doing everything myself i guess. yes, i learnt more about family unconditional love in this TSW journey. i will stay strong and positive as much as i can. thank you beautiful have a nice day :)

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  4. *hugs* you'll get through it lovely <3

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    1. thanks Jenny *hugs back tightly* haha hope you are better each day! xxx

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  5. Wow, you are truly amazing!!!!! Stay strong!!!! We can all get through this together!!

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    1. thanks Erena! I think all of ur TSW warriors are amazing! we def will get thru this. thank you so much for your support! xxx

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  6. Stay strong! My daughter (age 9) has ot bad on her face too but this just looks so painful. It is so hard woth the face because you just want to hide it. Sending you big hugs! I have a list of blogs on my blog, canI post yours?

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    1. Thanks DiAnn hugs back to u and ur daughter. it must be so hard for u and her. it just breaks my heart seeing babies and children go thru this. sure u can list my blog. do u have a blog too? i can list urs too! :) xxx

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  7. You are so so soooo brave, I admire you so much for being able to truck on with your condition. Just know that the early months are the worst and it will only get better from here on out! I really hope you see progress soon, you deserve it. Stay strong!!!

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    1. Thanks M! all TSW warriors and carers deserve the healthy happy road after this journey. u stay strong too! xxx

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  8. I came to your site after Joey posted it on the FB group. Hang in there. I am so sorry that your withdrawal has been so severe. The only advice I have is to keep yourself hydrated (drinks lots of water and real broth). I'm currently in NZ on the south island (family sabbatical). Where are you?
    Minh-An

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    1. hey Minh-an thanks I am trying to keep hydrated as much as possible. I'm based in Auckland. thanks for your support. When r u living South Island?

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  9. You are so brave and amazing I can't even fully express the amount of admiration I have for you. Keep fighting! You will kick TSW's ass so hard!

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    1. Thank you Esther for you kind supportive words! Trying to do my best. Let's all kick this TSW assss!!! xxx

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    2. Faye, I just came across your blog today for the first time. My heart goes out to you dear. I'm in my 12th month of recovery and it's been hell for me. I too had a couple nights where I considered suicide quite seriously. The sleep deprivation can really bring you to your wits end. I used steroid for my whole life and I'm almost forty, so I'm in for a long battle. All I can tell you is hold on. I'm so proud that you are sharing your story for others to learn. No doubt you will help so many people cope with this with your blog. Please hang in there Faye. I'm sending you positive and healing thoughts tonight. I'll be checking in on you often. Cory Zyromsky Thunder Bay, Canada

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  10. Faye, I just came across your blog tonight for the first time. I'm in my 12th month of recovery after using steroid creams for my whole life (39 years) As you know it's absolute hell. I too had suicidal thoughts after being deprived of sleep for weeks. I'm so glad I endured those days because although I still might have a year or two left to go through, the worst is over and I can see light at the end of the tunnel. You're so brave for sharing your story with others. It's blogs like yours that was the biggest help in my recovery. Knowing that all the struggles I felt and the countless symptoms were all common with my fellow warriors was comforting in times when I needed it most. Hang in there Faye. I'm sending you healing thoughts tonight. Keep that positive attitude. I'll be checking in with you often dear. Hugs.

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    1. hi cory, congrats for being nearly a year free from nasty steroids! thank you so much for you positive messages and thoughts of me. it's wonderful to hear that i'm not alone in this hell journey. i only manage to take an hour or two's nap each night on average and never in deep sleep always in REM sleep dreaming about the most bizzare stuff. zombie life everyday soooo tiring mentally and physically. r u living normal life now? as it u can do ur usual daily things without TSW interferring? u hang in there too, prayers to u! xxx

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  11. Many gentle hugs and prayers for you hun! I'm so sorry you are suffering like this but I can tell you are a major warrior and will help thousands of others suffering once you get through this. You are not forgotten by ITSAN, take hope! xoxoxo

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    1. thank you so much Joey! i hope my experience will help others too thank you for ur support and encouragement on ITSAN too, i really appreciate that xxx

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  12. Ahfaye, I heard about your story on ITSAN and just finished reading your blog. I have a 14 month old daughter and I'm so touched and amazed at your strength. I am going through TSW from using Protopic on my eyes and face and I know how hard it is to go out on play dates or shopping with the kids and get stared at. It's so hard. But it's so worth it. Don't let that momentary depression get the best of you- you are strong! We can do this! -Vanessa A.

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    1. Hi Vanessa, you must be an amazing warrior mum! it's hard having to go thru this hell journey with young children. yeah becos babies are so cute, ppl will look at ur baby then the mum...errr... haha. Thank u so much for ur support and dropping by Vanessa! r u almost healed xxx

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  13. btw,im from Hong Kong too :))) ! HANG IN THEREEEEE ush ush!!!

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    1. yay!!! thank u for dropping by!! lets all beat this TSW up!!! ROARRR!!!

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  14. Your bravery and outlook in the midst of true torture is admirable!!! I will pray for you to have quick healing!!!!

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    1. thanks Tracy! i so admire ur strength in this TSW battle too. it's great to see u having energy levels back. i'm still very tired alllll the time. is it becos of the supplements u mentioned u were taking to bring back ur energies?

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  15. I'm so sorry that you're going through what looks like a very painful journey. Makes my complaints seem so insignificant now. Topical steroid withdrawal sucks so much. But you're doing a great job with documenting your progress. You'll reach the otherside soon and you can look back at how strong and resilient you have been! Remember that there are many of us here to support you. I wish you the best. You have shown true strength - you are a true warrior!

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    1. hi San, no all TSW complaints are so significant becos it's just hell we aint suppose to go thru in the first place! thank u so much for ur support. i started this blog cos i wanted some record and i just wanted to be like TSW warriors out there, just like u ;) hang in there too, we will beat TSW! xxx

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