Month 5 - a bit of everything update


hi all, I hope warriors and carers of warriors are doing ok. I’ve been ok, the same or worse maybe. I am starting the 5th month of TSW. Since my last post I suddenly had a lot of support comments on my blog and to my surprise, so I checked my statistics and saw where it was coming from. Eden’s mum (Andriette) started a topic on the ITSAN forum calling out for others to support me. oh that is such a kind and compassionate act. I was crying reading those messages in the forum from everyone. Thank you so much for you support, I really appreciate it. Andriette is such a wonderful mum. She’s been looking after Eden for 7 months off steroids now and it has not been easy as we warriors all know. she also promotes anti-bullying which is such an issue I can imagine for kids at school if they look just slightly abnormal. I grew up with low esteem and faced discrimination a few times becos of my eczema. this is just not on and we all need to support anti-bullying because kids need to grow up in a safe and healthy environment. so salute to Eden and her mum. She has also had the media interview her about TSW and spreading the word out there you can read the article here: http://www.looklocal.co.za/looklocal/content/en/krugersdorp/krugersdorp-news-general?oid=7758034&sn=detail&Little-Eden-overcoming-addiction

Big Thank You to Miss Kitty Fantastico for mentioning me in her recent blog post. i started blogging about my TSW experience as I saw other warriors blogging, and was like ‘wow, they are so brave! and are helping so many people like me, maybe I should blog too then?’ so yeah, i'm just trying to be like u all :) we are all warriors. Miss Kitty mentioned the ‘very graphic’ photos haha yeah some of the photos are very bad, even my husband didn’t wanna look at it haha. maybe I should censor it more or take it down. but at the same time I wanna show everyone that this is how disgusting, ugly and gross it can get with a ‘harmless looking ’ topical cream if u overuse it. and to be honest, I didn’t expect so much readers, so I hope I didn’t freak anyone out :P

thank you a million for those who are supporting me and reading my blog. ur support makes me feel not so lonely and have the spirit to fight TSW. thank you


General update:

MENTALLYmoody, angry, depressed in general. trying to stay positive and active.

Sleep deprivation – I manage to get about 2 hours of sleep per night I think and it’s constant bizarre dreaming during those ‘nap times’. always in REM sleep not in deep sleep. so it feels like I’ve never actually slept at all. I get sooo exhausted every night scratching away, tossing and turning, sweating and oozing. then I feel very sleepy around 5-6am in the morning. I am dozing off finally. but then my boys are ready to get up for the day at 6:30am. seriously, when u know that tonight and every night will be the same with this kind of torture, how can u even not have depression? sigh…..

PHYSICALLY I’ve got blurry vision. i already have cataract in my left eye (due to steroid use) and can't see clearly with one eye and the other eye has been swollen and blurry. that's part of the reason why i haven't been online lately - replying to comments and the ITSAN forum. i can't see shittttt ok. and it’s dangerous for me to drive out and pick up my boy sometimes on bad days, so my mum is helping me now. I have to tilt my head up to see cos it’s semi-closed due to dead skin (that is not peeling off yet) over my eyes. I hope that makes sense. sometimes I can just sound so dumb. I have the usual broken skin, red, weeping areas: arms, side of waist, back, chest, face, still sweating, sore, and flaky. not to mention feeling lathagic all the time. with droopy eyes like now I just wanna keep them shut all day it’s tiring trying to keep them open! my body has been drying up this week and feeling a bit better but when I sweat i get really itchy and scratch my wound raw L and I start to weep again and blah blah blah vicious cycle goes on again

Legs: not very bad just rashes near knee area and comes and goes does weep a bit at times
TSW-006

Arms: pretty bad, very itchy when hot and sweaty, i end up scratching it raw then, it hurts like hell n finally dries up and i think it will finally heal after the oooze is out then it starts all over again. this cycle repeated about 3-4 times this month. Same with chest area Sad smile
TSW-007

Face: some new skin around nose, jawline and around mouth, ear area has cleared
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TSW-009
TSW-010 
 


MOISTURISER WITHDRAWAL 

 I stopped applying any sort of emollient, oil, or cream on my body and face as of Day 54 of TSW (7 September 2013). initially it was very hard to deal with I was sooo dry after a shower I couldn’t move at all and was soo painful I had trouble opening my mouth to eat! it was suicidal days back then but after a few days, ur skin gets used to the dryness and it’s much much better off with nothing (moisturisers) on ur skin at all. it’s less itchy and red and easier to flake off dead skin.

after reading Tommy’s post about moisturiser withdrawal I knew it was the right way to go for me. cos anything on my skin just made it worse and itch like crazy. then I read Dan’s post recently about not moisturising too and I know I was screwed all these years by drs who told me to moisturise every 4 hours when ur skin is dry. man that is just telling my body ‘ok I deal with the skin’s dryness externally’ so internally my body doesn’t produce it’s own natural oils.

I know some of my friends and also my husband has super soft smooth skin and they never moisturise themselves. that’s probably the secret – DON’T MOISTURISE YOUR BODY. I will not moisturise after I am completely healed too to test this. I dunno about the face though I feel like I need to moisturise my face but I will try to resist for awhile and see how the skin goes. at the moment since moisturiser withdrawal it has been over 2 months and my skin is fine and not overly itchy if I’m not sweating or there is no ooze underneath, I get out of the shower stinging with a bit of pain and when it dries it’s all good, not painful anymore until the vicious cycle begins…

My ooze now is also not yellow and smelly anymore it’s gone to clear fluid and bloody sometimes. if its not yellow I think most of that nasty steroid toxins have came out of my system already, which is good. but sometimes my arms get itchy and I scratch it raw and then next day it’s dry and seems fine but there is yellow ooze underneath, lots of yellow mini pimples arrrghhh!!! scratch scratch scratch again! I read from a blogger who went thru TSW and healed through Traditional Chinese Medicine (TCM) that you really need to get the ooze out as it is the toxins from steroids coming out. I dunno about this but it's definitely not that itchy anymore after ooze is out.


TRADITIONAL CHINESE MEDICINE (CONCOCTIONS)

I have been taking TCM from month 2 I think. it has helped in terms of pushing out the toxin out my body faster so I think that’s why my symptoms are quite severe. with my limited Chinese I have done a bit of searching online about TSW and it’s known as ‘steroid dependency skin inflammatory’ [激素性依賴皮炎] sorry for the bad translation. but many people have been treated with TCM to deal with TSA. I will continue to take TCM until my face is fine. I will post about TCM again later about whether it has help me personally with TSW cos I know many other warriors and Juliana says, you can fully heal from TSA by doing nothing at all. it is money I need to fork out every week and to boil everyday twice which is another extra ‘chore’ for me to do.


WHAT DOESN'T KILL YOU MAKES YOU STRONGER

I have had wonderful comments from other bloggers and TSW warriors about my strengths in dealing with this TSW business. Thank you so much. I am a very lazy person and I don’t really think I have much strengths in general towards many things. but actually I do endure pain quite well tho. I found this out by giving birth to two beautiful boys. But TSW is so much harder to deal with compared to pregnancy and labour. with having a baby, u go through pain and u get something beautiful and almost perfect out of it in the end – your precious baby. u work 24/7 for ur baby becos it is totally worth it! esp when ur baby smiles, laughs, accomplishes a new development like clap their hands, pick up things with two fingers, naps longer than an hour!, has another tooth cutting out, finally sleep thru the night… awww so worth it cos it’s so rewarding seeing these lil things. but this TSW shit is taking so fucking long. it’s like never ending pain. everyday sux. I can’t even look after myself and I needa look after so much stuff in this house – babies, daycare things, cooking, feeding, changing, bathing, shopping, cleaning…. fuck motherhood is the hardest job u can ever get. salute to all mothers out there! don’t ever give ur mother shit and any other mother shit becos they are all SUPERWOMEN!! raising a child and a family is not easy. Daddies take a lot of credit too, many dads take on the motherhood role at times.

Itchy Mitchy warrior just had her baby!! congratulations!! it’s tough work going thru TSW and having a baby!! pls congratulate her warriors Smile

that’s all for now. take care u all, happy healing
xxx
ahfaye

-ahfaye-

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

28 comments:

  1. Hello Ahfaye, I have come across an interesting post from Louise UK you may find usefull to read, in her last post she's written about oozing skin during TSW http://topicalsteroidwithdrawal.blogspot.co.uk/ Sorry if you have already read it or know her as she is the ITSAN veteran! I'm very new in the TSW game!!! My son age8 is TSA and I'm still just gathering info and confidence to start TSW with him. Hugs and best wishes Hana x

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    1. Hey Hana, thanks for that I read Louise's blog too! Yeah I'm still confused about the ooze concept and I guess it's just different theories to explain. I don't really care just want it to go away! Haha. Sorry to hear about your son needing to go thru TSW soon. But you're such a great mum getting organised and prepared now. You guys r not alone. Don't be scared even tho it's a scary process. It's well worth it in the end. Hugs to you both! xxx

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  2. Ur so stronggggg...
    Love ur updates. My herooooo!

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    1. Ohhhh not good.
      Ive been very bad. I hace dried ooze that refuses to dispaych so i have scakes of dried ooze like skin all over my cheeks making me look lumpy. I look rrally bad all over my face. Its very difficult for me to leave my house.
      I hope we have good relief soon.

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    2. oh that sux hun sorry to hear that but once the ooze is out it's better i hope cos that's the case for me. it's ok i look very bad too but this is all temporary remember! we will get relief soooonn xxx

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  3. Blog blog blog baby yeah! Your photos are amazing and should be on billboards in my opinion. I can't wait for your healed photos (I'm sure you can't too!) they're going to be incredible! Lots of love and hugs xxx

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    1. thank u hun, can't wait aye. the patience thing is killing me!!! can't wait to have a white face like u haha hugz

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  4. Hi Ahfaye! I agree with Miss Kitty - looking forward to seeing your healed photos - you're amazing! I have added you to my blogroll xx
    http://rubyredandtsw.wordpress.com/

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    1. thank u Ruby! i have added u to my blog list too! i look forward to reading ur blog and supporting u all the way hun! hang in there xxx

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    2. Thanks! Hope your day today is a bearable one :) x

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  5. Hi Ahfaye,

    Stay strong! I had very bad withdrawals just like you but they occured on my neck and back of calves and it was enough to make me literally crazy. They gonna heal up in due time, just as you will!

    Leslie
    saynototopicalsteroids.wordpress.com

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    1. thank you Leslie! u must be all healed now? i'm just reading ur blog with a cataract eye and another swollen eye so taking some time haha. wow u're gonna write a book on TSW?!!! awesome!! let me know if i can help! i hope i heal soon, summer is here and it's friggin hot. was soooo frustrating yesterday in the hot weather and dealing with my non-stop boys. best time of the day is when they r finally asleep lol. thank u for ur support i look forward to reading ur blog and book!

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    2. Yes, it is a project to raise awareness. Would you like to be interviewed? It will be a book collection of various people perspectives on TSW. I would love to include yours if possible!

      Drop me a quick mail at cyzleslie@gmail.com =)

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  6. Ahfaye,
    Great to see another update from you. I'm checking back with you often. You're very descriptive in your writing, which makes for a great read. I hope you leave those pictures of you up for people to see. I wish I kept more of a detailed log of my battle as well. Every bit helps get the word out. I wanted to share something with you. I was discussing my battle with a friend last night, and when I was telling him about when I was at my worst back in January-February, (also had serious suicidal thoughts) I suddenly realized that I couldn't really clearly remember just how bad the suffering was. I mean I have memory of nerve pain, intense itching, burning etc, but I can't really place myself right into the memory like I would have expected. Mu guess is that it's the mind blocking out the suffering, perhaps like I've heard about women and childbirth.
    I find it rather interesting, and maybe you'll be happy to know that the sheer torture of it all might not hold up in your memory. As for you're battle. I know it's so hard, and those nights seem to last forever, but looking back on it as a whole, time still flies, even when you're not having any fun at all. I'll be at 400 days on Sunday- but whose counting right? We all are. Hang in there sweetie. I think about you often and am sending you positive, healing thoughts.
    Cory Zyromsky,
    Ontario, Canada

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    1. Thank you Cory it's nice to hear from you.Yes I hope I can just be too busy staying happy once I'm healed to even remember the bad TSW days haha. 400 day is amazing! thank you for your thoughts and positive encouragement, it means a lot to me from warriors who have healed like you! xxx

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  7. You are amazing and incredibly brave. xxx

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  8. you are so brave and courageous ... admire how you are doing your best to cope with everything AND be a mom.
    Thank you so much for blogging ... it's so strengthening to the rest of us.
    xxx
    Eden's mom
    Andriette

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    1. thank u Andriette, so r u and Eden! congrats on the certificate award Eden! keep up the fantastic work Eden and Andriette, i'm looking upon u both xxx

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  9. You are so brave! The pictures are great keep them coming they aren't too graphic. Document is the way to go!

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    1. thanks Esther! ok so i didn't freak u out? haha. u r so brave too! i see u are healing pretty fast from ur blog photos! keep up the good work! lots of love to u~ xxx

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  10. Hey lovely lady! I just added you to my blog roll. You are an inspiration!

    I just started the moisturiser withdrawal a couple of days ago. Don't know how it is going to work out yet, but we are all in this together!

    Hugs. X

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    1. Thanks Louise! I hope moisturiser withdrawal goes well for u! it certainly has been the best decision I ever made! xxx

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  11. a friend told me about this site!! if the TSW works for you... I Will do it too.. !!

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    1. hi there! i think it working! haha start now! it's a long journey.... keep me posted warrior :)

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